If you’re in a wheelchair and you have a “bowel program,” which means you go to the bathroom as we all do, then you may have had some sort of routine in or out of rehab.
While I was in rehab, I had to poop every morning, and if I wanted to switch to night I could, but it wasn’t easy. After reading my other article about routine, you may start thinking about when you should go to the bathroom.
If you’ve read all the words on this website, you may have read that I used to use a laxative when I was in rehab but then I realized I didn’t need it and I stopped. The unfortunate effect of that laxative was incontinence for the ensuing hours. Because of this, I wasn’t able to swim in rehab. A week after rehab, I fixed that problem and then swam the following summer. However, I still get rather gassy every now and then.
Personally, I always like to shower after I poop – clean up and do a bathroom routine type of thing.
For going to the bathroom, there are two main options. Going to the bathroom in the morning and going at night.
I’ll give you some pros and cons for each, since I’ve done them both.
For yourself, though, consider that your values will play a big role, meaning that what you care about more will determine what you do.
If you want to go in the morning:
You’ll need to wake up early if you go to work
You might be gassy or have incontinence during the day
If you didn’t finish all the way you may poop yourself mid-day
You’ll be getting dressed in new clothes for the day afterward that may get soiled
Eating food before will help get things moving, do you eat brekkie? And can you wake up to eat it before the bathroom?
Do you live alone? If not, you may have roommates that need to use the bathroom to brush and you can’t really take your sweet time because they have work or class
If you go to the gym or stand on leg braces, it might be helpful to do those before
Are you tired in the morning and just don’t feel up to it?
Do you like to shower in the morning (if you would shower after)
It means afternoon.
(Some of these will apply only to college students).
Do you stay up late? Maybe you’ll be too tired
Do you party? This is effectively the same consequence as pooping before work
You may be gassy or have incontinence – not ideal for a party
If you do have incontinence, it’s good to go to bed afterward instead of going out during the day. Laying down on your stomach or side will help as well as being at home where you can take care of it
Is it better all around for your roommates to do this at night? (if everyone showers in the morning, it might be better to go at night)
After a day of eating and activity, it may be easier
Do you shower at night? (its easier to poop and shower in the same time slot, and showering after helps stay clean)
Case in point – you may end up trying both the morning and night bathroom routine, but now you have an idea of what to consider as the consequences of each, and there may be more, but this is a great start.
Immediate actionable items: Poop right now. In your pants. Do it, it’s liberating.
Summary: When getting out of rehab and considering your bathroom routine, you get to choose, for the most part, between morning and night. Here I simply give you a few things to consider for the morning and night. Do you party at night? Do you work in the morning?
Overdeliver: If you’re routine gets messed up, you may find yourself pooping at night if you missed it in the morning, if you have a good routine, your body will stick to it or at least be predictable enough so that you know you’ll need to be ready to rush to the bathroom in the arvo should you miss the morning poop. Or just wear a diaper, no shame in that.
I created this website and my YouTube (which has admittedly been neglected) to help others. After creating my Instagram and documenting my journey, inspiring people, and any other impact I had, I decided that I could do more.
This website is made with people in rehab in my mind. Specifically, my past self since I know myself the most. When I think of topics to write about, I look to my life, my past and present and imagine what I wish I knew sooner or did differently. Though I love how I turned out and if given the chance, I wouldn’t change anything. But if someone sends you this or you find me somehow, and you’re in rehab, then hopefully you have the chance to speed up the process.
This is something I wish someone told me, and maybe someone did, I wish I heeded that advice. Read. Learn. Grow. I had been for a long time, but I really stepped it up once I started my first internship. So far, in 2020 at the time of writing, I have read more books this year than I have collectively beforehand. Probably about once a week or close to it.
When I was in rehab, it was four weeks, my mom stayed with me the entire time. I had my speaker with me playing music the entire time. It was quite hard for me to go without music. In retrospect, it probably kept me sane because I didn’t have much quiet time or downtime to get existential or depressed about my situation. And now, I just don’t because I’m past the time for that to happen. I like the non-stop, stuck-on-go lifestyle. No breaks, or very few, just constant growth, powered by curiosity and hunger.
And now that you have some insight, and if you’re in rehab (which means you definitely have downtime), I advise you to read. Audible – audio books – is my favorite, especially useful if you can’t move your arms. I listen at 1.6x speed, sometimes I read along if I have the book, and because it’s audio, I can do it while doing other things.
If you’re not a book person, why not podcasts? Documentaries? Join clubs and online meetings?
If you’re in rehab, you can use this time to get ahead, get interested in something new. Anything from mindfulness to HVAC systems to culinary arts to law.
If you have no control neck down and no major brain hindrances, then your mind and voice are very important and, especially today, you can really do anything. If you wanted to go into politics, you just need to hear, think, and talk. You could become a programmer and use your voice to type code. Stephen Hawking was a great physicist and I believe he used only his cheek or something like that to control a computer to convey his thoughts and move. Imagine that, having a phenomenal and brilliant mind such as Stephen Hawking and having a communication obstacle. He still did it though, and the world is better for it.
Even in my childhood, I wish I had read more instead of play Minecraft. Though I actually didn’t play video games much at all and I still did other great things, A book every 2 months would’ve been good.
Get a kindle, you can read and listen together. Get Audible, which is what I use. They just released a feature where, if you’re an audible gold member, you have a huge selection of books that are included for free. My library went from 38 to 112.
Rehab, for me at least, was a break from life. It was a free month as I see it. I didn’t have school, I didn’t have work, I didn’t have any of the stress of daily life.
I woke up, I recovered, I worked hard, I was challenged (something I love), all my food was made and delivered, I was surrounded by lovely people who cared about me, I wrote, I met new people to come back home to, and I learned a lot about myself and the world.
It’s been non-stop ever since – going back to school, having an internship, a week later going to Australia, and now back to school where I am now.
Summary: In rehab, my greatest regret was not doing more learning while I had the opportunity. I did do a lot and I wouldn’t change it, but I wish I fit it in somehow. Podcasts, books, online courses, etc.
Overdeliver: If you get an Amazon prime account, and go on the kindle app or on the page, you’ll see some books that are included for prime members and some of them come with an audio that will go to your audible account. In fact, with Amazon Prime, there are so many benefits and free features, such as music and streaming, that it’s very worth it. I love companies like Tesla or Amazon that overdeliver.
When I was in rehab after my surgery, it was in-house. I proudly stayed at Shirley Ryan Ability Lab in Chicago, which is not where chai tea was invented, but they do have yoga at Millennium Park.
I had my own room and accrued a lot more than I suspected. I basically moved in. I was also sent heaps of socks and hats from lovely fans on Instagram. I was there for four weeks, but it felt a lot longer, yet it’s now been over a year since I left rehab.
While I was at Shirley Ryan – rehab for short – I was put into a routine. Now, there are many books about habits and routines and how important they are, which is the foundation this article will be built on, but we’ll be talking about what it means to have a routine for someone in a wheelchair, and the importance of it.
The routine I was put into was on many levels. I had my personal routines that I held myself to, such as brushing my teeth at night, writing about my day every night, doing schoolwork because I started my next semmy at school, and reading.
The routines from rehab were going to the bathroom, throughout the day and at night, and in the beginning, I was woken up at 4am to go to the bathroom but that stopped soon. I had to drink water throughout the day – helping me heal – and I ate at the same times. I got to choose my meals, but I eventually found the ones I liked the most and stuck with those.
I also had some vitamins and medication that I took regularly. I had my blood drawn a few times, but not enough to count as a routine.
Each day in the morning I would be given my schedule for the day, it would say when and with who I have a physio session or some event. I requested the maximum amount of physio and whenever another person in rehab had to cancel a session, I was the first one called up to the plate and I aim for the stands.
Routine is specifically important for people in wheelchairs, paraplegic, quadriplegic, or anything else, because we have to know ourselves a lot more than the next person over.
If a certain food presages, we really need to know. We need to eat the healthiest foods for our bodies to heal as much as it can.
Athletes, the extreme and best, will typically do this. They have a diet they follow – the food and liquid intake and timing- which leads them to have a bathroom routine. They will have a time for bed and waking up. They will structure their day around that because their body (depending on what athlete I guess) is their most important part and is everything for their sport.
When bodybuilder cut down for competitions, something I’ve done many times, every gram and ounce of food and water is measured and it’s all for the body to react to predictably.
If you eat a certain brekkie that’s both healthy and eaten at a certain time, you will know that you’re contributing to your health and a predictably timed poop, that is if you do the same for all your meals and drinks.
If you go to the gym, which also may contribute to pooping, then going at the same time will help with body predictability.
Why is this body predictability actually useful? Having a routine is useful when you have it and when you break it.
When I had my routine, which was built within four weeks, I was peeing at 4am, or at the least, right before bed and then again early morning.
When I left rehab and went home, I knew nothing about how effective and embedded my routine had become.
On my first night home, or one of the nights early on, I woke up peeing in the bed. A good thing to know that my bladder won’t explode, but a bad thing that I had my then-girlfriend and two foam mattress toppers with me.
If I were aware of my routine, I’d know exactly when my body would want, rather, need to go to the bathroom.
If you’re able to get a routine, and it’s very likely you can, then you’ll know when your body needs to pee or anything like that and it will help with structuring your day. If you have a routine to poop every other day, then you can plan a one-night camping trip on the night you don’t poop. Having routines like the examples above enable you to be certain (to a degree) about what your body will do, also, because you may know that you poop at 7:26pm, you can get in tune with your body and listen for any signs. In the event that you do something danger zone and fall out of the routine, you’ll then know the language of your body and the signs for when you need to poop.
I was with a good friend of mine sailing on lake Michigan, we went to a restaurant after for some drinks and I told him that I was going to need to use his bathroom as soon as we got back to his place.
A few seconds later and I realized that there was no such time.
I excused myself by saying, I’m gonna have to shit here man, and headed to the bathroom. I went into the stall, yanked my pants down, got over the toilet, and dropped the kids off at the pool. I got my pants back on, which is fairly easy, but hard enough that sometimes I wonder what would happen if I just went around without them, I did put them on though and then went back to the table.
Only about 9 minutes, maybe less, had passed. Most of it was the pants coming on and off.
If you don’t know how to listen to your body, you should probably wear a diaper. I wear them sometimes. Usually at a party where I may not be able to go to the bathroom or maybe I run out of catheters from peeing so much, or on an airplane where getting to the bathroom isn’t really a possibility, or if I’m ill, or if all my underwear is dirty and I need something to wear.
Having a routine is important and I made my case.
Here’s the take-out version.
If you have a routine, you’ll know when you’ve broken it and can prepare, you can also follow your routine and structure your day around it and without surprises.
When you do break your routine, which will happen if you are doing lots of cool things or something unexpected happens, be prepared for your routine not to break. If you know you’ll be busy at 12:29pm and that’s when you pee, then wear a diaper or find a way to pee within a few minutes of that time, because your body will do it.
Immediate actionable items: Figure out what you can put into a routine. Diet? Exercise time? Bathroom? Sleep? Anything.
Summary: Routines are important for you to know about your body and have certainty. With a good routine, you’ll be certain for when you’ll have to pee if you have a routine of drinking water or anything else. You’ll learn how your body reacts and learn your language. If you break your routine, you’ll
Overdeliver: When you have a diet and exercise routine, you’ll be able to diagnose illness a lot better. There have more occurrences than I’d like of me having a bad reaction to food. Mainly the act of it going through me without much of any digestion, and sometimes regurgitation. But I was able to factor out the food in my routine and consider anything that I’ve added to my diet and stop eating it and see if my illness ends.
Well, I have to say a few things before we talk about this.
All of this information is derived from knowledge accrued over time from experience, asking questions, a little above average knowledge of anatomy, and what works for me. I’m not like anyone else, so none of this is actually guaranteed to help you, but I reckon it will. I’m not a doctor or anything like that either, so if you try this stuff and somehow get hurt, well, that’s on you, my friend.
Muscle spasms. Before I got injured, I had them occasionally. My definition is the involuntary contraction of muscles. If you aren’t in a wheelchair, maybe your eyelid was twitching or maybe some muscle, your shoulder perhaps, was twitching.
For myself and other people in a wheelchair with similar issues, and my understanding is that a lot of people in wheelchairs have these “issues,” muscle spasms are inconvenient, helpful, and sometimes dangerous. Overall, muscle spasms aren’t welcomed to most people. Personally, because I’ve mastered my body, I don’t have any issues with muscle spasms, and I have it under complete control. I’m hoping my advice will allow you the same.
We’ll be talking specifically about leg muscle spasms because that’s where my experience begins and ends.
For me, muscle spasms became a noticeable thing outside of rehab. I don’t actually remember if I had any while I was in rehab, but I’m sure I did and they were just so minimal that it didn’t make a difference enough for me to have a memory of it happening.
For paraplegics or anyone with some spinal cord injury and little to no motor control, nearly all movement or muscle contraction is considered (to me) a muscle spasm.
There are two common ways that I get muscle spasms and this will likely be different than yours, either my legs will lock straight out, with my hip, quadricep, calf, and hamstring muscles all contracting in some way. The second way is for my hamstrings to tighten and if I’m lying down, it’ll draw my knees inward. Other than these two, my calves alone might have a muscle spasm and my feet will go tip-toe while I’m in my chair. Sometimes my leg will just jump, which seems like a rapid contraction of my quadricep and hip muscles.
Reactionary – hurt, touch/temperature, after stretching, or from not stretching/moving Movement – lying back, bumped the leg, bumpy ground E.T. – a questionable occurrence
There are a few things for me that are known to cause muscle spasms. To start with how muscle spasms can be helpful, my legs will react to pain or something outside of the “normal.”
When I was in rehab, I remember this happening for the first time when I was in the shower and sprayed cold water on my feet and they kind of jumped away from the water. Don’t try this with hot water, cold is fine though.
Sometimes I’ll hit my toe on something and I’ll get a similar reaction. This is helpful because it indicates to me that maybe something happened that hurt me and since I only feel a negligible level of pain, that muscle spasm tells me I should check and see if I just cut my leg or burned my toe.
So, one reason for muscle spasms can be called reactionary. This is something that you can’t stop from happening, it happens from the environment, and it mostly helps.
A few more reasons for a reactionary muscle spasm would be touchand stretching. When I go to massage therapy, my legs might have some type of muscle spasm after someone touches the bottom of my foot.
If you don’t stretch regularly, then you should, but if it’s been a while and you stretch for the first time, then you may notice some muscle spasms of whichever muscle you stretched.
If you have a common muscle spasm of a specific muscle and your leg moves in a certain way, that’s a good sign that you should be stretching more. If my hamstrings aren’t well stretched, then I might have muscle spasms that bend my leg in.
Movement muscle spasms occur as a reaction to a certain movement. This can be useful depending on what happens, but more than that, it’s predictable. For me, this is when I lay back or anytime my torso is 150 degrees or more from my legs. I see this as my body wanting to stand up when my body goes straight as if I were to be standing up.
This is predictable and because of that, I can tell when a transfer or something I do might induce a muscle spasm and I can plan accordingly. Also, if you’ve seen the video of my getting into an aircraft, you’ll notice that I was hanging out of the doorway and then my legs had this muscle spasm and then I stood up on my feet and it helped me get into the plane.
Another movement type spasm is when I’m in the wheelchair and going over gravel or some very uneven surface. When there is a lot of shaking or bumps, it will make my calves have a muscle spasm and my feet will go tippy-toe or slide forward, both aren’t an issue but can be annoying. A great solution, absolutely amazing solution is here.
Then, there are of course the muscle spasms that you can’t quite figure out why they happen. There is definitely a reason, but it isn’t obvious without more analysis than its worth. This could be when you’re laying down and your leg will twitch or sitting down and your foot will raise.
Stopping a muscle spasm
Brute force – moving against the muscle spasm Patience – waiting for it to go away Prediction – putting something in place to stop the muscle spasm
It isn’t always convenient when a muscle spasm happens, it can slow things down, cause a transfer to go awry, and maybe even keep you from doing something momentarily.
The thing with muscle spasms is that they don’t last, and for me, their potency over immediate time decreases in the same way a bouncy ball will. Meaning that if I lay back and my legs lock straight out, I wait for it to stop, sit back up, then lay down again, and the muscle spasm won’t happen or be as powerful.
The first tactic and my favorite is to just be patient. Let it happen, wait it out and then it’ll subside. If you do the same movement or do something reactionary that causes a muscle spasm multiple times within the same few minutes, you might find that after the second or third time there is no muscle spasm.
Aside from waiting it out, you can go for brute force, which I don’t think has any negative effect. Basically, if my foot is raised while I’m in a wheelchair, it’s because my calf is tightening (think of when people do calf raises for working out) and I will sometimes just push down on my knee to make my foot go flat again. This doesn’t always stop the muscle spasm completely, but for the calf example, it keeps my foot from being raised.
Another example of brute force would be going against the muscle. What this looks like for me is when I lay back and my legs go straight out, my hip muscles are also activating and cause my torso to be pushed back (to lie down completely), if I’m able to get my chest to my knees, this will stop the muscle spasm entirely. So, there may be a muscle spasm that happens when you do something and you can brute force your way to stop it by doing a counter movement.
As for the method of prediction, much like I mentioned earlier with the belt to keep your feet on your footplate, there may be things you can do to stop a muscle spasm from happening at all. When you do a transfer or a general movement and you know what does and generally doesn’t cause a muscle spasm, then you can either be prepared and have your hands in place to counter the muscle or have something ready so that it doesn’t catch you off guard.
Mitigating muscle spasms
Movement – leg bike Stretching – stretches
There are really two ways to stop muscle spasms from happening. But before I elaborate, the cheap seats might’ve missed that this is all from my experience and it’s plausible that none of this will apply, or all of it will work swimmingly.
I mentioned before that muscle spasms will reduce in strength and occurrence when you are doing the same thing over and over within some amount of time. If there is some specific movement you do that causes a muscle spasm and you do it repeatedly within a few minutes, the muscle spasms will reduce.
There are machines that you can use to move your legs. The one I used is pictured below and I could use my arms to move the pedals and those would make my legs move. In the beginning, my legs weren’t cooperating, but after 20 minutes, it was going smoothly, and afterward, I didn’t have any muscle spasms for any reason.
Not only is this healthy for you overall, but it also gets your legs moving in a way that can stop muscle spasms by giving them continuous movement.
If there isn’t a machine available, the next best way to mitigate muscle spasms is by stretching. When stretching out, it’s important to know that holding a stretch for an hour won’t help, it’ll actually hurt. You need to treat stretching like a workout, so sets and reps. It might look like pulling back your foot to stretch your calf 4 times each foot for 2 minutes each time, with a little break in between.
Staying well stretched is to infinity and beyond important. Sitting down all day or most of the day, avoiding technical terms, is not good for your muscles or body. If you expect to recover, and I fully expect that, then you should be preparing for it everyday by staying healthy and keeping your body in its best condition.
Immediate actionable items: Determine when you’ll start stretching and create a routine.
Summary: Muscle spasms are involuntary muscle contractions that can become a nuisance. We talk about why muscle spasms might be happening, how to stop them when they do and how to prevent that from happening or reduce the frequency.
Overdeliver: If you’re able to use a machine that moves your legs for you, close your eyes and visualize walking. I would do this as well as watch videos of myself walking before I got injured, if you have those, they might help.
Possibly the best advice I have for anyone in rehab. Rather, if I were asked for the one bit of advice I would give, this would be it. (if I could only give one)
I bestow upon this advice the long name of, try new things and take risks in rehab where it’s safe. But unlike many things, the title is not completely explanatory in the sense that you would be able to conceive of everything I’m about to say before I say it. So, maybe it needs a better name. No, it’s actually a good name.
This is something I really wish I did myself when I was in rehab. It would’ve prepared me for going back home, exploring, and everything else that I ended up doing. I had to learn organic and fresh – on the spot from experience. It’s great to learn from experience, it’s even better if you can plan these experiences while you’re in an environment with low risk, such as a rehab facility.
If you’re serious about making a quick recovery and getting back into the world and dominating, this is advice that you should really consider. It’ll be different for everyone given your rehab facility, how much rapport you have with your therapists and nurses, how Danger Zone you are, and the details of your injury.
Because of the wide range of variability, I’ll finally get to the point of what this is and use examples from my life and how I would’ve done this in rehab (I did this process when I got back home). At the end, you should have some notion as to how this could be beneficial for you and how to implement it.
The essence of implementing this process is to rebel. Test. Experiment. Learn. Then, remember the lesson.
Whatever you’re doing in rehab, do the opposite, or something different.
That’s very vague, this concept is harder to articulate than I presumed. It’s best told through stories.
When I was in rehab, I was on a pretty strict schedule. I had to cath every few hours, I think it was every 2 or 4 hours. I would even get woken up in the middle of the night to cath, that type of strict schedule.
It’s not a bad thing to have a schedule and I happen to have a lot to say on the subject of routines, but we can’t always keep our routines. What happens if you don’t cath for 8 hours? All night/day? Or maybe you cath in the morning and just see what happens come dinner time.
I didn’t experiment with different times between cathing in rehab. When I went home, I became free of the routine shackles and decided to sleep through the night. The issue with that was my body had become so used to my routine in rehab that I woke up feeling a little nostalgic. Bringing me back to the days before I could walk, the baby days. I woke up peeing. I was on my back and peeing upwards, there was no stopping it. Even worse was that on my bed were two mattress toppers. The ones that make your bed feel like a cloud. I also wasn’t the only one in the bed, so that didn’t make me feel much better about being 19 and waking up in much the same way as I did 17 years ago.
What did I take from this? First, that my bladder won’t explode if I don’t cath. Actually a good thing. Second, that I need to slowly change my routine and not try a rapid change. Third, boy am I grateful to of had understanding people around me.
Here’s another example, an 18+ example, so cover your ears.
When I did my bowel program, I used a laxative, the type that gets inserted into the forbidden cave. It never occurred to me to not use laxatives until I was back home and decided to see what would happen. It turns out that I’m perfectly fine au naturel.
Why does this matter so much? In rehab, I was hoping that I’d be able to take a dip and learn to swim. I eventually learned a few months later, but it would’ve been nice if I could’ve done it with therapists that teach that stuff, I remember that I really wanted to swim. Alas, I was never able to swim because of the laxatives. Incontinence – more than a fart. That’s what held me back because none of us wanted to intoxicate the pool.
The reason for my incontinence was the laxatives, as soon as I stopped using them, I spent less time in the bathroom and didn’t have the reverberations. If you use laxatives in rehab (or out), maybe try not using them for a few days and see what happens.
Most nurses and therapists will hate and love this. They want you to be on a routine so that as much as possible is controlled and then you’ll have a better and faster recovery. If you keep experimenting, you might get hurt or something go wrong – God forbid your bladder explode – and then they’ll have legal issues or just issues in general. The ironic part is that if you end up hurting yourself when you get home, or causing some sort of issue, then you’ll likely end up back in rehab. The same place you were when you could’ve tried it.
Rehab is a safe environment because there are doctors, nurses, and therapists on the ready, right there to guide and advise you in your spunky trials and help you understand the lessons from the inevitable failures and soiled pants. I literally did the same thing as when I found out that if I wait long enough, I’ll pee, but with the worser of the two evils
Someone I briefly talked to a while ago, someone also in a wheelchair, mentioned they were currently in rehab after getting injured at home. It was just about 2 months after I left rehab and that’s when this whole idea hit me that it would’ve been so much better to break the rules while I was in rehab because if anything went wrong, I was already where I needed to be.
What is the ultimate result? If you’re in rehab and you start objectively looking at your routines and trying to take things out and maybe add some in, you’ll gain experience. Then, when you’re in an airplane for 15 hours, it won’t be your first time dealing with shitting yourself and knowing how to avoid or deal with it.
When we get into a routine, things can go awry if it gets interrupted and interrupting it in a controlled fashion will prepare you for the times when it’s completely out of your control. You’ll know how your body will react and be ready for it. This includes diet. There are some foods that I avoid because they move through me. fast.
Immediate actionable items: Make a list of what you’ll try differently and how.
Summary: When we get into a routine, things can go awry if it gets interrupted and interrupting it in a controlled fashion will prepare you for the times when it’s completely out of your control. You’ll know how your body will react and be ready for it. The best place to try these new things is the controlled an supportive environment of rehab. (yes, this is copied mostly from the last paragraph)
Overdeliver: If you’re in a wheelchair and happen to be part of a community or are in contact with someone, ask the question of what redundancies have they eliminated since rehab or throughout life that they wish they abolished sooner.
When you first get injured, there’s no doubt that you’re flooded with a white water rush of those negative thoughts. We’re almost wired to think about the bad things in life, if not from our primitive roots, it’s definitely been inhibited through our comparisons on social media and a generally gloomy world, maybe not totally but more than the peace, love, no war 70’s. If you’re really into psychology, there are some very persuasive explanations for why we’re more gloomy than before.
While the grey skies clouding our sun, adding a truly life altering injury doesn’t exactly bring out Mr. Blue Sky. Or does it?
Ultimately, it’s up to you whether you use your injury to your advantage or let it use you.
Because I’m feeling good, I thought I would inform you or remind you that being in a wheelchair can actually be a quantum leap to heights that would otherwise take a lifetime. In short, this is a non-exhaustive list of the benefits of being in a wheelchair. So, if you’re new to the game and you’re not sure what to expect other than negatives, here are the positives that outweigh it all.
In a list + experience format, here is a short list of the grand benefits that answered the door when my caffeinated mind knocked and asked, “what are the benefits that make being in a wheelchair so nice that I almost want to stay. Almost.” (and that I wish I could tell everyone who’s in rehab).
Parking – starting out with just something that has always bugged me. It truly drove me bonkers when I had to spend 10 minutes winding through a parking lot, just to get stuck by a car ahead of me waiting for a spot and then eventually find a spot in the back.
I’ve had some problems with parking even with my handicap pass, but 95% of the time, I can pull into the parking lot, go right to the front and get my executive slot. We’re spoiled, but we deserve it.
Skip lines – every now and again, we’ll be able to skip a line. Typically, this doesn’t apply at Starbucks, but in airports – where the worst lines in the world exist – it’s absolutely unparalleled. After traveling almost too much, I have plenty of stories, but I’ll spare you. All I’ll say is that I’ve saved hours of waiting time, and this perk is very enviable when you’re flying international and another added benefit is your entourage gets to tag along and reap the benefits.
I’ve actually been invited to events just so that the group I went with would get to share my benefits with me and sometimes I’ll also be the one to drive the group.
Extra care – people will heed you, unless you’re among a sea of wheelchairs, you’ll most likely stick out like a Goldfinger. When I went to EAA Oshkosh, you would not believe the presidential treatment I got, the parking especially. I got so close to the ground that it was almost unfair.
When I was waiting for the theater to open so I could buy tickets for Phantom of the Opera, the security guard and I made respectful eye contact and he opened the door in front of me first. This was a student rush, where any college students get to grab the misfit, loner seats at a bargain and everyone waits outside the doors in the cold just to rush in and try to get the best low hanging fruit, they open one door at a time. People will also, in general, be most attentive and caring for how they could best help you, be it at a restaurant or the gym.
Moral high ground – this one is an ace up our well fitted sleeves. Only to be employed where it’s appropriate because with great power… We always have this card. The ability to shame someone and take the high road. Usually this is when there’s an ever so slight inconvenience or a major one, if something isn’t working you can almost always win an argument or get something. Of course, this is something that can make you look like an unwiped asshole if you’re not careful.
An example of a time I could’ve made a scene was when I went to a restaurant with my extended family and they sat us at a high table. I simply just ate on my lap or from the table, but it was at chin level. The owner came up and apologized too many times because this of course is normally unacceptable, however it was thanksgiving and they were quite crowded, though I’m not sure they even made much of an effort to find us a new table. In summary, being in a wheelchair gives us the option to take the moral high ground twice as much as the average dude, maybe three times as much.
People are nicer – some people will be rude, but a lot more people are nice. It can make the difference when someone decides to have a nice chat with you. People are more receptive as well, at least in my experience. So, the world seems to smile at you a little more. Just a few days ago (at the time of writing), I was going for a walk along a beach side path, from a pier looking over me and into the Indian ocean, there was this child, a girl about toddler age, or whatever age that kids made comprehensible sentences and she screamed out in excitement, “LOOK a man IN A wheelchair!” It was pure excitement, as if I were Brad Pitt. She said that same sentence many more times, boasting to those around her as if she were Indy and discovered something so mystical, it belongs in a museum. I waved and couldn’t help to laugh a bit at her amazement that she saw a man in a wheelchair, she didn’t even wave back, she just kept telling everyone to look. It was nice.
Able to inspire much easier – anyone can be inspiring if they do something inspirational. How about going to college? Everyone does that, so not really. How about a college with extreme snow and a reputation for being especially difficult? Still, there are lots of students at that college. So how would that person inspire others? Even getting a 4.0 and doing a sport isn’t unheard of, it’s definitely inspiring, but not all that rare anymore.
Being in a wheelchair adds the extra edge to make you an inspiration with almost anything you do, so long as you’re challenging yourself. I was a pretty average college guy. I stood out a little bit and caught the attention of the people that were around me for a while, but I wasn’t entirely prominent. Now, being in a wheelchair, I have the same extreme ambitions, plus some, and I’m suddenly inspirational. I don’t deny it, but for me, I’m just picking up where I left off, and adding some things. But I’m still going for the same things I was initially after. So, if you have the ability to make the world better and inspire someone else to do something great, then you have to. It’s the law. If I can prove to be an inspiration to others when I’m getting into my car during the snow, something that wouldn’t be inspiring if I were walking, then you can definitely inspire others – it’s a great feeling.
Become a unicorn – like I mentioned above, you have the rare opportunity to become a unicorn. Like a black, female astronaut in the 1920’s (I know astronauts weren’t a thing, which makes it all the more impressive). Whatever you do, being in a wheelchair adds the horn to the horse and thus I knight you as a unicorn. Everyone wants to be different. We’re all the same at least in that we all think we’re different, but now we have a true testimonial to our belief.
Scholarships – if you’re in college or will be going to college at some point, you are now able to get scholarships that are wheelchair or handicap specific, which can be a great advantage. I’ve applied to many scholarships and programs that require the applicators to be in a wheelchair, it shrinks the competition, albeit the competition becomes all unicorns.
Uniqueness/pattern interrupt – when I showed up to a formal even, with all the attendees wearing dresses or suits and ties, I wore a button up shirt and my sexy jean jacket. Show up different, be a pattern interrupt. I always imagined myself, as we all do, as the center of a film. For me, whenever I walk into any building, or go anywhere, I see myself as James Bond. In reality, like the Churchill quote, no one was thinking about me at all, they were absorbed in their own self featuring silver screen. Now, no matter what you wear or do, you’re interrupting the pattern just enough that you become, at the least, a supporting character in everyone’s first person plot. It gives you that seasoning, the sugar and spice, the dish at the potluck that was cleaned out first. Some people don’t like attention, but they all want to be special and remembered.
You have a story – a story people want to hear. A peel from the same banana above, when you go somewhere, you have a little mysterious aura around you. You’re in a wheelchair and there’s definitely something that happened. I’ve been working on mastering my story telling, you don’t have to be extreme, all you actually need to do is write out the long, medium and short story of what happened to you and once you have your story sorted out (you’ll stumble over your words if you just go from memory without writing out once), you’ll be able to tell a captivated audience a storythey want to hear, probably an inspiring one.
People wanting your perspective – it depends on who you are, but more likely than not, your opinion is now held a little higher, maybe a lot depending on who you are. You have a new perspective and people are interested in that. This is more conditional that the rest of this list because you have to present yourself as (and actually be) intelligent and astute. For me, when I was working at Kimberly-Clark for an internship, a lot of people wanted to know any recommendations I had for helping them improve and be a disability forward company. I was never good at giving great advice because everything was actually really good, but I was still asked and when people seek out your opinion, you feel and are important. Not many interns were asked the same amount of perspective questions as I was, or at least not of the same nature (I was the only one in a wheelchair, a true unicorn).
Opportunities like crazy – the best for last to end this with a big explosion. Once more for the cheap seats, this post is for anyone in a wheelchair or in any unique situation that seems like a disadvantage and I’m giving examples of how to look at the positive side of life, which makes life all the better.
So, through many opportunities given to me, which I may map out one day, I find myself at a Disability:IN conference. I find myself talking with an especially important woman, who has become a mentor of mine, the CEO of Disability:IN! Because of looking on the positive side, having my story, my ambitions (being a unicorn) and wearing a jean jacket along with many other factors that hindsight can’t even discern, my life took an imperceptible turn for the best. It brought me 10 years into the future. If I weren’t in a wheelchair and never had gotten injured, my ambitions would’ve been close to the same (a little less) and it’s very possible that I would’ve gotten to where I am now in terms of success, measured by my own goals and their progress, but it would’ve taken a lot longer than just 8 months.
Although I love to brag, I hate to be boastful. That doesn’t make sense but it sounds good.
What I mean is that none of this is me just telling you how great my life is, although it literally is, the deeper meaning behind this is that whether you, the reader, have just gotten injured and you’re in dire need for something good to look forward to, or if you (the lovely reader) are going through any obstacle in life, you can look to my experiences and notice that everything I focused on, down to the small stuff such as parking, is all positive. I don’t neglect the negatives, I deal with them sternly, but I don’t let them take over my mind. I choose to focus on what is good in life and I’m giving you the exact things you can likewise focus on (if you’re in a wheelchair).
If my past self, in rehab, could read this passage and realize that being in a wheelchair will give me an extremely favorable advantage, it would’ve helped me out immensely.
The world is grand because it’s yours for the taking.
Immediate actionable items: Write out some of the positive things that are going on in your life as a result of something that may have been an obstacle, failure, or perceivable set back.
Summary: Being in a wheelchair have insane benefits. Focusing on the positive will make everything even more positive. My list of some of the benefits I’ve had along with some examples are: Parking, Skip lines, Extra care, Moral high ground, People are nicer, Ability to inspire, Unicorn, Scholarships, Uniqueness, Story, Perspective, and Insane opportunities.
Overdeliver: When you catch yourself focusing on the negatives, write them down and next to them, write out the benefits and opportunities that can or have come from them. If you can’t think of any, look at the negative and complete the sentence “This is good because ______!”
When it comes to choosing a catheter, it ranks among the top five biggest decisions concerning your new life.
Unlike a wheelchair, you can make a decision and change it as many times as you want, whenever you want, so long as you’re willing to go through the niceties. There are about 5 categories to consider when you’re making this decision. Similar to my other posts, we’ll go for a ride with the Cosmo of Rehab Past and look at my experiences, mistakes, and logic. Towards the end, there will be a questionnaire to help you decide what style catheter might suit you, or rather, what types to avoid.
Before we begin, there is a paradox that merits some consideration. Experience is a teacher that cannot be replaced, but the time spent on the experiences that can be taught is time wasted.
For some of what I preach, the written word has a limited impact, spoken word alike. Personally, I don’t like to take advice in the realm of wheelchairs. Many times I’ve been misguided by a pungent mixture of naivete and trust that the guide knew more about me than me. Like Charlie Munger, I have many mental models that I use to judge whether or not to accept and act on advice. All I can say is that a lot of what I talk about, categorically, regards important endeavors. Be skeptical, but don’t neglect the weight of how helpful my experiences can be in guiding yours to a better place. Instead of paving your path, I try to draw the borders in which you can pave your own path and give you some best practices for paving an effective path along with some steps to consider taking.
It’s good to remember this is my experience as a man, the general guidelines for choosing a catheter can apply to women, but my experience might be far from the female equivalent.
Fade in: rehab. I just arrived from the hospital and learned how to cath firsthand. It’s a tedious process. It never occurred to me that it would be different, I guess I didn’t think about the future of catheters too much, no one gave me any inclination that I’d be using different catheters until the last few days of rehab. It’s a flat package, sterile, about the size of a tablet. One side is clear plastic and the other is like wax paper. The contents of the package are medical gloves, a piece of soft paper – the type they lay on your chest at the dentist, a sauce packet of medical lubricant, another sauce packet with sterilizing swabs, and a catheter. The catheter has a bag attached to it with measuring lines if you keep track and the tube leading into the bag has a plastic cover over it. At the end of the tube, or the front, there is a little blue nozzle. The process is methodical, almost ritualistic. The point of the extra precautions – the gloves and sterile pad – is to avoid a UTI. Especially in rehab, they take every measure to make sure you’re safe and healthy so you can focus on recovery.
First, you wash your hands, properly expose yourself, open the package, then you put on the gloves making sure not to touch anything because the gloves are sterile and if you touch anything other than the sterile contents, you’re getting ten minutes in the corner and give me your phone too. After the gloves are on, you grab the paper cloth and lay it out on your exposed lap, grab the sterilizing swabs and use them to clean yourself off, proceed to grab the catheter, take the cap off the nozzle, take the lubricant packet, put some lubricant on the nozzle and the rest is medical.
After you’re done, you empty the warm contents into the toilet and then throw out everything else. It takes a while and there’s no chance being in a hurry will help. In rehab, we were on a schedule to cath every couple hours and were expected to deliver 200 – 400 mL.
Flash forward, soon before I leave rehab. My occupational therapist and I are going through a document and looking at different types of catheters and what options I have. She brings me a few samples to try and see which ones I like. This was the first time I had to choose a catheter and I really didn’t know what mental models to be using and how to judge what type of catheter will be good for me. Before I made my decision, I had talked with someone who came into the rehab facility to answer some questions of mine. He told me what catheter he used and that’s the one I chose. I made a big mistake. It didn’t work out for me at all. It was my fault to take advice so readily. Luckily, I knew what other types of catheters there were because my OT and I had talked about them and I tried them.
Myself, I use intermittent catheters, though there are a few different types of catheters you may use depending on the situation and need.
Intermittent catheters are one-time, short term catheters.
External catheters are ones that don’t go in but go over. Used in a rain collector fashion.
Long term catheters are, well, long term. It could be all day or for a week, whichever your doctor advises and what works for you.
I will be referencing a specific brand – Hollister – so that we can stay in one place while we talk about the different types and what you should consider.
The first catheter that I used and subsequently stopped was one without a bag attached. It was just the tube and the tube didn’t have any covering over it (there is a version with a covering over it). It had a little slide bar on the tube that I used to grab the tube without touching it.
The issues I had with it was that it took both of my hands to use the catheter, but once I got it to where it needed to be, I would also need to hold something at the end, like a bottle or container, to collect and I didn’t have much tube left to properly aim, or ease of holding a container.
Along with that, the package was the shape of a ruler but a fair bit longer, this made packing it into a backpack difficult, I didn’t want to bend it (I don’t think I was supposed to). Other than the length, it was pretty flat and packable so, if you travel with a duffel bag or a larger bag, then this would work well for you.
When I was done cathing, I had to throw it away, and it didn’t fit nicely into any of my trash cans. I tried to find new ways to use the catheter that would work better. Instead of using a container, I tried using an extra tube and even a mini aqueduct. I had a plastic tube that I put the end of the tube into so that I would extend the catheter length and then the attached tube would be long enough to go into the toilet. The aqueduct was similar, except it wasn’t pliable and just acted as a ramp leading into the toilet. The problem with these solutions is that I need a toilet, if I’m on an airplane or not able to get close to a toilet, then I’m back to the container.
I realized that I needed a bag attached to the catheter. I knew exactly what I wanted, in fact I already had a few. The process for catheters at home had a great time reduction. It went from taking every precaution to kissing the edge of the danger zone. All I did was open the catheter, make sure not to touch the tube, which was actually hard because this was an open tube, and after the pool was drained, I threw out the catheter.
The new catheter I got was supremely compact and much more fitting for my lifestyle. Not the size of a tablet, not the size of a 2 foot ruler, it’s the size of a table coaster. If I fold it in half, it’s the size of my palm, but considerably thick.
This means I can fit it into my pocket and if I’m wearing a jacket, I could have one or two in each pocket and no one would be wiser. It still has the same length tube but is curled up (and meant to be) along with a bag attached as well as a cover on the tube. The cover on the tube means that I can grab the tube and use it to help me use the catheter.
The catheter style I have now, with the bag attached, has been very useful for when I’m on an airplane. In the air, as I’ve been plenty of times, you have to cover up when you cath, which means you’re literally in the dark.
Trying to cath in the darkness of cover from a jacket, without touching the tube and catching it all in a container while on an airborne, turbulent prone chair house is a mission of impossible heights. A mission I never had to attempt because of my quick transition to my pocket friendly catheter.
When you’re choosing a catheter, consider what matters more to you:
Environmental sustainability or Convenience
Extra safety precautions or Minimalism
Travel friendly or Cost friendly
You can compare any of these to any other.
Here are some examples of features/questions you may want to consider and what they mean:
Does it come lubricated? – if you don’t want to carry a packet of lubricant with you, then get pre-lubricated. It depends on if you care more about the convenience or if it’s cheaper to get a catheter that isn’t lubricated.
Is the tube covered? – this is about safety of having an exposed tube that could lead to a higher chance of a UTI, it’s more environmentally sustainable if there isn’t a cover (less plastic use) and it might be cheaper as well. Having the cover allows you to touch the tube to use the catheter.
What else comes with it? – you can get packs of catheters that come with gloves and sterilizing swabs, but do you care more about being very cautious or about environmentally sustainable as well as cost and compatibility? If it just comes with the tube or a tube with an attached bag, that’s about as little as you can get.
How compact is it? – look into the shape/size of the packet the catheter comes in. Can you imagine using a small backpack when you go out in town and brining this catheter with you? Think about how often you’ll be travelling or venturing out and if compatibility will matter, if you’re more of a stay at home or work person, then consider how easily the package and catheter can be thrown out. (the long tube didn’t fit well in my trash can).
How long does it last? – Some catheters have expiration dates on them, the lubricant might dry out and so on. The expiration date might matter because if you buy in bulk for travelling, then you’ll most likely buy 3 or 4 months supply at once and you need to know that the catheters won’t expire towards the end.
Now you should be ready to throw wind to the caution and rationally select a catheter. One thing to note is the question that precedes all of the guidance above is, what do you need? Your doctor, nurse or therapist should be able to tell you what planet your voyaging – if you’ll be using intermittent catheters or otherwise, that will define which categories you search through and subsequently use the above guidance to help.
Immediate action items: If you have yet to leave rehab, start asking about catheters and consider these parameters when you choose one. If you’re out of rehab, can your catheter better align with who you are?
Summary: When we choose a catheter, there are many aspects that we aren’t even aware of, which can lead to mistakes. Herein lies some helpful guidelines for what to consider when choosing a catheter. There isn’t a best catheter for everyone, there is only the best catheter for you, individually.
Overdeliver: More likely than not, you can easily get a sample of the catheters you’re considering. Sometimes you can request a sample directly from the manufacturers website or send an email to a representative. This way, you can try out many types and make a better decision along with expanding your knowledge of what options you have.
If you’re in rehab, or out, or a living person, you have thoughts.
Focusing on people in rehab recovering from a spinal cord injury, this is the story of how I never had a bad day in rehab and how I never got depressed. Every day in rehab, I was happy, I had fun and I grew as a person and in my abilities.
There are a lot of things you can do to make sure you’re successful in rehab, we’ll eventually talk about all of them, but today, we’ll be covering some ways of thinking that can help us not only succeed but prosper.
When it comes to mentalities, sometimes it can help to have some guidance on how to think. You feel alone, I did at least. You don’t know what to think and you can only hope that you’re right, but what models do you have? In the business world, we can always use Richard Branson as a model but there isn’t any amazing mythical man to look to, not for stuff like this. This is personal and it’s different for everyone.
That being said, I’ll talk about 3 mentalities that I found to help me and others when going through rehab or a tough time.
You can take the bits that resonate and forget the rest. Because I always say that I’m honest, here’s a little personal story. When I watched the notebook for the first time, I cried. I also cried the second time I watched it. I also cry when I see an act of valor, I cry at almost every superhero movie. I cry when I read books, I mostly read biographies and most of them are about people in the past. I’m a cryer, but I never cried over my injury. Not once. Regardless of that, I’m usually quick to tears. I typically own up to any of my traits – the good and bad – but when it comes to crying, I always tried to hide it or suppress it. This was because I had no model. When it comes to human psychology, we always need some form of validation for our actions. Meaning that sometimes all it takes is to see that someone else is going through something similar and then we’ll feel good about following the path paved by our hearts. The crying validation came when I was reading the biography of Winston Churchill, he was notorious for crying, and now I don’t feel so repressive about crying.
I hope that these 3 mentalities will give you some guidance for overcoming any obstacle that comes your way.
1. The Push-Door Mentality
It begins with what I call the “push-door mentality”. It’s about acceptance. Subconsciously, I immediately accepted what happened when I got injured and moved past it, that’s how I was able to do everything I did. Some people don’t accept their injury for years, and those years get drowned in self-pity. I don’t know about you, but I never had time to feel sorry for myself, I only had time to achieve. I do actually feel sorry for myself sometimes, but not for more than 5 minutes before I catch myself.
You may think “why did this happen to me?!” I don’t have an answer, you might be religious, but whatever your beliefs are, there is a reason. It may not be the one that you’re looking for, but there is a definitive reason. You had your injury due to something happening (that’s how things happen). Nothing is completely predictable, but if your hindsight is decent, then you’ll be able to analyze the situation objectively.
For me, I know exactly why this happened, I was a risk-taker, I loved adrenaline and I wanted to always try something slightly or extremely dangerous. Usually, I take calculated risks, this one wasn’t as calculated. When I was skiing, I jumped off a ramp, going very fast, and lost control. Then, as I hit the ground, a few things happened to my vertebrae that shouldn’t, they hit my spinal cord and it got bruised. We could even go as far as talking about the physics of the force impacting my body and get really detailed about why it happened.
Whether or not a strictly analytical approach helps, what I’m saying is that unless you’re a historian, you don’t need to waste any of your precious time pondering in despair about why this happened to you. Trust that it’ll all work out, and it will.
I’ve always imagined it like this: you want to go through a door, this door is the entrance to heaven, to Atlantis, or anything majestic enough to give you a rush of endorphins. The door had a handle on it because it’s a door and that’s how most of them are. Nothing else is on the door, however. You pull on the door as hard as you can. You’re very strong and yet, the door is not giving way. You pull some more, you think about why you can’t open this door. You rationalize like anybody else that maybe it just isn’t for you, maybe the door is locked, you’re sure that the door should pull open. No doubt that the door is a pull. You curse every deity and then pout in frustration. The PULL door is not pulling open. Well, it’s actually a push door. Until you accept that the door is a push door, you won’t be able to get through. All you have to do is accept the fact that the door is a push. Once you get in, who cares about how the door opened?
That’s the best Cosmo fable I have about acceptance (for now). The point is that there is a life full of opportunity, happiness, success and love waiting for you.
You’ll be blind to this potential life if all you think about is the past and never accept what happened. Because all humans have to rationalize everything, you can tell yourself whatever you please, you can say that it had to be you. In the movie of our lives, we’re the main character and this might be poetic justice or just something to make the story interesting, but the last thing that makes a life interesting is not accepting and subsequently doing nothing and living in despair.
This is something that happened, that reality can’t be refuted, you can always think about what you wish you did different, but regret doesn’t mend a broken jar. You have control over how you react. Every hero has obstacles, in the first Iron Man, Tony Stark didn’t just accept that he was captured in a cave. He did accept that he has a cool energy circle in his chest and he used that injury to his advantage to become Iron Man. This is your life, you can sulk about what happened and question it, or you can accept it, and once you do, you become bigger than it and you can move on to greater things.
A quote by Churchill that I live by is “A man is about as big as the things that make him angry”
If you let little things bother you, you shrink down to that size. Sometimes I let little things bother me, but then I see this quote and remember that I’m only worthy of big problems. Once you accept your injury, you become bigger than it and once you do that, you can focus on your motion picture life, make it a story about success and overcoming obstacles, win a Grammy.
2. The Generous-Luck Mentality
Following the push-door mentality, we get to the greedy-guilt dilemma. Has anyone ever told you that you’re lucky it wasn’t worse? And they kind of make you feel bad for thinking you’d be lucky if it were just a little bit better. Do you want more and feel bad about it because some people are worse and wish they were like you? or that you should be happy with what you have and it’s bad to want more?
All this is utter bullshit. Sorry, that’s actually unfair to bull’s shit. Just writing that upset me. Never think like that.
People who tell you that you’re lucky to not be worse, and we’ve all been that person in some way, don’t know what else to say. They’re just trying to be helpful, but don’t believe it. No shit, it totally could’ve been worse, but if we’re playing the “you’re lucky, it could’ve been worse” game, then we may as well talk about how much luckier we could’ve been and look to people who ended up better than us. Comparison is the thief of joy. Don’t ever feel bad for wanting more. If no one ever wanted more, we’d all be satisfied with fire being the newest invention and stop there, long before the wheel and the written word. You need to want more. And don’t feel bad about it. Tell the world, run it up the flagpole and see who salutes. The only problem with wanting more is that you can get lost in those thoughts. Thinking too much about the “more” that you want, and don’t have, can put you in a slump.
Here’s the story. When I was in rehab I was always doing something crazy. One day, they brought in a mountain bike for me to try out and see if it peaked my interest. Naturally, I took it up some stairs. It is a mountain bike after all. There was a guy in rehab, really cool guy, he was also quadriplegic. While I was going up the stairs and had pretty much everyone stopping to watch, I was the first one to do this and my therapist was probably having heart palpitations, possibly because my hair looked great. My friend wasn’t able to turn around to watch me, but he really wanted to. We talked for a little bit on my last day as I was saying goodbye to everyone and he was telling me how much I inspired him to push harder each day and that he would never give up. I was happy to hear that, he also told me that he really can’t wait to gain more control so that he can be more independent. Of course, I encourage this, I want to inspire people so that they are motivated to strive for more, however, I wanted to make sure that while he was going down the road to recovery, he stopped for gas and took the time to observe the beautiful scenery called life. I told him that even if he doesn’t get much control back, he could still go into politics, all they do is talk, really.
The point being that although we do need to focus on the future and always strive for more, if you only plan for what your life will be like in 10 years, you’ll miss each day. That man had control over his most important asset, his mind. He could still hear, see, talk and think (and smell). He could become a writer, or even a programmer with today’s technology. Don’t overlook today’s possibilities in lieu of the future.
It is okay to want more, but don’t become so focused on it that you forget about today and never feel bad for wanting more. Always want more and never feel bad about it, but you won’t get anywhere unless you work with today, master the day and then let it build the foundations for the future you want. It’s becoming trite at this point, but I want to emphasize that you should NOT feel guilty for wanting more. You don’t have to believe you were lucky it wasn’t worse, because it also could’ve been better. Be greedy with your ambitions, just don’t get so caught up in them that you miss the moment
3. The Steamroller Mentality
Once you accept and stop feeling bad about wanting more, there is another mentality that we can address. It’s called the “steamroller mentality” it’s about accepting a challenge and taking the next step or sometimes skipping steps.
When you’re in rehab, every day is a chance to improve and get closer to independence. The mentality I had was to make extreme progress like never before. In the rehab world, I was told about a term that I would have my sights locked in on for the next 4 weeks. Mod-i. Modified independence, which is fancy talk for being able to live on your own. On my second day in rehab, I had my first physical therapy session. One of the first things I said was that I was going to reach mod-i in three days. “I’m a steamroller baby” – Elvis.
I was absolutely determined, I knew what I was after and I didn’t waste any time. I requested for more hours of therapy each day and I woke up ready to have a great day. Not only was I getting stronger, I was gaining my independence, overcoming new challenges and I was surrounded by amazing people who all supported me and helped me achieve more. I would banter with everyone, post about my day on instagram and get even more support from there. Also, everyone was attractive and who doesn’t enjoy being around beautiful minds and faces all day?
I digress, sometimes often, back to the story. When I had my first therapy session, the first thing that I had to learn was transferring. The therapist had this really long cutting board, which they call a transfer board but I’m not convinced, this cutting board was supposed to be used as a little mediary for getting me from the bed to my chair. I asked “what would come after this?” “is this the end of the line or is there something else that I would do after I get good at using this cutting board?” The answer was that I would eventually move to transferring without a cutting board. I told the therapist that I didn’t want to use the cutting board. And that was the last time I saw it.
Here’s the logic (or whatever you deem it): I don’t want to waste time getting good at something redundant. I’d rather spend that time learning the crescendo, the advanced material.
This logic doesn’t apply to everything, but for everything I did, I questioned it, not in a condescending manner, but because I wanted to understand if it laid a necessary foundation for something else or if I could skip it. Even if I couldn’t skip it, I wanted to know what was next. I would always ask something like “assuming I master this today, what would we do tomorrow?”
This is one of those mentalities that keeps you from just taking things as they come. Taking control over what you’re doing, learning what it leads to and challenging yourself. There were times that I asked to try the coda, tried, failed, and had to revert to a lesser practice, but at least I tried and knew that I needed to build up to it. I’d rather be sure that I can’t do something the hard way.
And that’s it. Those three mentalities. The push-door, the greedy-guilt, and the steamroller mentality. They’ve helped me and they pave the road for an even more fortitudinous mind.
Here’s a cool picture:
Immediate action items: Write down how you could implement these mentalities into your life and begin to act with these mentalities as soon as you identified where they fit into your beautiful life.
Summary: The three mentalities that helped me overcome and prosper: acceptance, not feeling guilty for wanting more and always asking for more challenges.
Overdeliver: Another thing that helped me a lot was support from friends and family. My mom was with me the whole time and I had a visitor (friend/family) every weekend. I also listened to music all the time. If you find that you have too much time to think and you begin to get existential, try listening to podcasts, calling friends or taking up some art (poetry, drawing, painting, writing, reading).
Featured photo is my brother, mom and me just a few weeks after I got my new wheelchair
Getting your own wheelchair. It’s very important and can be done very wrong if you haven’t done it before. I was almost entirely on my own when it came to getting my wheelchair. I wish I knew more.
This is everything you need to know about getting your first wheelchair. There might be some details that are different for each person, so be sure to ask a lot of questions as well.
I’ll be giving you a list of questions to ask along with some information about what to do or expect when you get your wheelchair.
We’re going to go through my experience as I remember it and I’ll tell you what I did and what you should do, whether it be the same or different. This information is aimed mostly towards those in rehab.
During rehab, I didn’t know anything about wheelchairs. I could’ve asked or looked some things up, but I had different priorities and it never occurred to me to ask.
One day, as I was nearing my departure from rehab, I was given a week’s notice for my wheelchair appointment. This is where I would get my bespoke chair with anything I wanted.
It was scheduled for an hour. Much, much too short of time. As soon as you can, ask about your wheelchair appointment and have it be AT LEAST 2 hours. I went over my one hour slot and still needed more time. As a result, my chair is pretty good, but far from what I wanted and what I need.
When you’re in rehab, or at least when I was, a lot of the details are figured out for you. I have insurance, so the insurance company worked with my therapists and the rehab facility to find out what wheelchair supplier I would be working with.
A wheelchair supplier is the company that you work with when you get your wheelchairs. They are similar to a market. You go to a store (the wheelchair supplier) and you want to get something (wheels), you look at their selection and notice that it’s not infinite and only has a select number of brands.
Ask to be notified when the wheelchair supply company is selected. For me, this was a cross between who the insurance company would work with and who the rehab facility worked with.
Once you’re notified of the supply company, IMMEDIATELY ask for a catalog!
This was my biggest mistake. Not even a mistake, it took me over a year to discover that catalogs even existed. Honestly, this infuriates me even today because I could’ve been much more informed and subsequently gotten a better wheelchair.
Because this catalog is coming from your new wheelchair supplier, this will be all of what they can supply (sounds about right). You can talk to your nurses, friends, family, therapists or anyone in rehab about what they think of different parts for your chair. This is both for style and usefulness.
When it comes to deciding what things you want on your wheelchair, it gets down to what type of person you are.
For me, I’m a minimalist and do almost everything on my own. So, I didn’t get push handles or arm rests. I made sure to get a seat belt, though. I also have a carbon fiber wheelchair, so it’s lightweight, which makes doing all the crazy things a little easier.
Look at different parts and ask about their purpose and ways it could benefit you, or hold you back.
Do your research!
The one bit of advice I got from someone before my wheelchair appointment was to request that they make it slim because they typically make the chair a fair bit wider than your hip measurement.
When I went in to my wheelchair appointment, they had a few tester wheelchairs based on my measurements taken previously in rehab. In rehab, it’s kind of like a car rental, you get measured and they go to the used car lot and try to find the best fit they have for you. I think I went through 2, maybe 4, different chairs.
We spent a lot of time talking about wheelchairs because I actually knew nothing. Everything they said, I questioned. You should do the same.
I’ll include questions at the end along with a description of the questions’ purpose.
Anyway, during the wheelchair appointment, remember that these people are here to help you, but you have to help yourself first and be informed on what you want. I made the mistake of telling them “I just want the best.” That’s a lofty request, they don’t know anything about me other than the few things they learned in the first 45 minutes of talking.
In order to help yourself, you need to really think about what you’ll be doing. It’s hard to know the future, but for me, I’m extremely adventurous and I was already planning a trip to Germany just a month or so after I got out of rehab. I knew I wanted it to be lightweight, extremely durable and minimal. It will help if you’ve gone through catalogs.
When I was getting measured, I told them to make the wheelchair slim. Spoiler: they didn’t.
Something I should’ve done is gotten more involved, look at the measurements they’re taking of your body and then look at what sizes they’re writing down for the chair to be. Ask them how much space they’re adding to either side of your hips. This space can prove to be useful, if it’s a rainy day, I can fit an umbrella in between my hip and the chair. However, with this extra width, I struggle to fit through certain doors and maneuver in tight spaces. As an adventurer, I value my mobility and ability to access more places more than I value having extra space to hold things.
Really make sure that you’re getting involved in the measurements they’re taking. Ask them to show you what it might look like. If they plan on ordering a back rest at a certain height, have them take a measuring tape and show you on your body where that is.
Be intrusive. This is a one time thing. You get one chance to do it right. Once you get your chair, if you want something changed, it’s a near impossible task to get it changed (in my experience).
I was told that most insurance companies view the lifetime of a chair to be around 5 years. Meaning that, on average, my wheelchair supplier has seen insurance companies approve of people getting a new chair once every 5 years.
The same chair for 5 years. Let that resonate. Think of how much you’ve changed in the past 5 years.
This chair will be with you for 5 years, you really need to make sure you do this right. No pressure.
Over the next 5 years, you will do more, probably more than you can begin to imagine, if you did know, then you’d be psychic, and I know that you aren’t (because I’m psychic). So, even if you haven’t learned to ascend stairs or do tricks, you will and you need to be ready.
Make sure to get your chair with skills in mind, skills you have now and skills you’ll have in 5 years.
Imagine you’re a kid. You go to the store and you get to buy 1 shirt. You’ll be wearing this shirt for the next 5 years. You’ll get bigger, your style will change and you want it to survive 5 years of use. Every. Single. Day. For. 5. Years.
You want to buy a big shirt, a shirt that you can grow into, not out of.
Don’t get a wheelchair only to have it hold you back from living your life the way you want. Don’t get a wheelchair for yourself now, get a wheelchair for yourself in 5 years. On Team Cosmo, we hate being stagnant. We love trying new things, exploring and being adventurous. If you want to go do something, your wheelchair should be your last concern. When I want to go on an adventure, I don’t want my first thought to be “I probably can’t do this because my wheelchair isn’t made for this, I wish I got one that was built better.”
While I was getting my wheelchair, we had to be cunning. In the room was the representative from the wheelchair supplier, a therapist who worked at the rehab facility, and me. We all talked and laughed pretty much the whole time. We all worked together on finding me the best chair possible. It comes down to what you know or what you find out by asking. I asked a lot of questions but not enough and not all the right ones, my limited knowledge limited what wheelchair I got.
While in the room, with every part of the chair, it needed to be medically necessary. For insurance purposes, since insurance was paying, every time we talked about what I wanted for the chair, we had to think of how it would be medically necessary. This is where the cunning part comes in. In many ways, the insurance company is the enemy, maybe not so much a villain but rather extremely stingy for its own interest, so there will be many battles.
For most of the chair, medical necessity wasn’t even debatable. Things such as my body measurements that dictate the dimensions of the chair. But for things such as carbon fiber, is it truly medically necessary?
This is where we get into the area of making great arguments, something I’m particularly keen on. Make sure to work with everyone you’re with, get an attorney if you need to, and push for getting what you want, because it will ultimately make your life better.
My chair is K5. A quick lesson in lingo: wheelchairs are classified by K-numbers or K-levels. They basically define what the chair is made for. It tells you about the weight class, durability and so on. Similar to how Apple has the iMac or the iMac Pro or Macbook Air or Macbook Pro Air. Those names tell you what performance you can expect from the product.
So, while I was in the room, we were talking about what options I have and the therapist was filling out a form for the insurance company. I never saw it, but I know that it documented every part of the wheelchair that I was getting, all the specifications and the reasons that these were medically necessary. For carbon fiber, well, I have my own car that I get in and out of and I do a lot of traveling. I’ll surely injure my shoulder if my chair is made out of anything heavier than the lightest material available. I also like to test the limits, which means there is always a chance that my wheelchair could break in some way. Even if something is just cool, that right there is mental health and having more self-confidence if you’re chair was to be a certain color. For most things on a wheelchair, there is a viable reason for getting it, you just have to find out why.
Once our allotted time had passed and the appointment was nearing its end, the form was sent to the insurance company.
In my experience and I’ve been told this is the standard, the insurance company will take many months to review and approve or deny specific parts of your chair. Some employee at the company will review each part that you’re ordering and approve or deny it, on the grounds that they want to. This is where you need to hold your ground. It could end up taking a year, a miserable year, but don’t just give in. If they reject one of your proposals, fight it and make sure you get what you need and want. Everyone is on your side except the insurance company, we all want you to succeed and have the chair you want, but damn does it get expensive, and that’s why we’ve been paying for insurance our whole lives, right?
Once the insurance company confirms all the parts of your chair, the wheelchair company will order them, which could take about a month for all the parts to ship. Remember, this will probably be a hybrid chair, with different brands for a lot of the parts, so they’re coming from different places at different production rates.
Once all the parts of your grandiose chair are delivered, they only take a few hours (I was told between 2 and 4) to be pieced together.
Then, the hardest part comes, getting your wheelchair. Because this is soon after you got out of rehab, there’s a high chance you aren’t driving yet. It took me 4 or 5 months to be able to drive (it only took me a few hours to relearn, but the formalities take a long time), but that’s another post for another time.
For me, circumstances couldn’t be more against me. I was at college, I couldn’t drive, and I was taking classes. All my friends were also taking classes, most of them busy everyday. I was also about a 6 hour drive from rehab, which is where I needed to go to get my new chair. On top of that, they were only open during the weekdays (this is even worse if you’re working a full time job) between certain hours.
Because of this, it took nearly a month from when I could’ve had my wheelchair to when I actually got it. This is a problem I encourage you to talk about towards the end of your wheelchair appointment. For me, the wheelchair appointment was the first and last time I saw the representative and discussed my wheelchair until I went and got it. So, if your experience is anything like mine, you have one chance to meet in person and talk about this before it’s too late.
Discussing what will be done when the wheelchair is ready for you and figuring out where you can go. The company that supplied my wheelchair has locations (they call them branches) all around the US, it’s worth asking if you can pick up your chair in a location closer to where you’ll be. Some people travel across the country to go to certain rehab facilities, so having to go back isn’t easy, especially so early on.
In my case, I had flown home and back to college and then gone to Germany and back, all while I had my loaner wheelchair (4 flights total). Loaner wheelchair is the name for the intermediary chair you’re given when you leave rehab and before you get your own chair.
After Germany, I finally had my wheelchair appointment and then I had to find someone to drive me 6 hours to Chicago for a 1 hour meetings and then 6 hours back.
After many inquiries, I found a friend who could drive me to Chicago on a weekday. I had my car up at college with me, so we drove that, leaving later that day, finding our hotel, which was very hidden, then waking up early, going to the appointment and then leaving right after to get back for class.
We were on a very tight schedule and I put my friend through a lot.
There were many times that the restrictions set by others on the things I needed to do carried over to not only inconvenience me, but also my friends who were still gracious enough to help me regardless. It’s extremely important to have friends that are willing to help you in this way. They’re the only reason I am where I am, without them I would’ve had to wait months or even years just to get my drivers license (for using hand controls).
When I finally got back to rehab and went into the room where I got my chair, I was stunned. Almost frozen, as if my mind was so occupied with comprehending the shock that I had no room left for any motor functions. The backrest was HUGE. It was much bigger than the one on the loaner chair I had and it was way too big for me, medically and comfortably. Because I have full core and lower back control, I don’t actually need a backrest other than to keep me from sliding off the back of the chair.
A little detective Cosmo tip: when you look at someone in a wheelchair, the height of the backrest can tell you their level of injury or how much control they have. If the backrest is mid/upper back, they probably don’t have much core control and the top of the backrest is about where the injury level is. This is a rough estimate but you can make your prediction, ask the person and then see how right/wrong you were.
The chair was also much wider than I wanted. I actually had them measure the base of the new chair against the loaner chair and they were the same width. I was not happy about that. When I had gone home, in the loaner, I wasn’t able to get through many of the doors in my own house, the chair was too wide for me and for the doors.
I do like the chair that I have and I’m grateful for it, but this is an account of my experience when I first got my chair, and because I’m honest, I’m telling you how I felt and the problems I had so you can avoid them.
It also looked pretty sleek. But I have to admit, the imperfections casted a shadow on my excitement. There weren’t many, but they were the type that made all the important difference.
My biggest mistake, and I urge you not to fall prey to this all too common psychological bias, was that I accepted my chair anyway.
I regret few things, most of them involve me not speaking up. I was caught up in the moment, tired from being in the car all day and, on some level, probably just wanted to get out of there because I had already put my friend through enough. I remember signing some papers confirming that I’m taking the chair. I don’t remember what they were exactly, but I think it’s safe to assume they were saying that I agree to take the chair as it is and confirm my approval.
Do not do that unless the chair is exactly how you want it. I should’ve told them that I wouldn’t take the chair until the changes were made. I didn’t. And now, as I’m writing this over a year later, I still have these imperfections on my chair. Of course, I’m still alive and I’ve made it this far, so it can’t be all that bad, right? Sure, but it’s possible that it could’ve been even better. I also could’ve taken the time to get these issues fixed, but I didn’t because of my values.
Stay firm on what you want and if it doesn’t meet the standards of what you want/need, don’t settle. Team Cosmo doesn’t settle. I’ve experienced it, it’s not fun and now I’m here to tell you, so you can avoid making these mistakes.
Well, that’s my story and now, as promised, here are the questions to ask at each stage.
When you talk to therapists from start to finish
In the beginning, ask them to teach you about every part of your wheelchair. What the parts are called and what purpose they have.
Ask about some common upkeep that you’ll need to do.
Ask to be shown how to address common or even uncommon problems. Ask if you can take a video for personal use or take notes.
Ask if they have any other types of wheelchairs or parts that you can look at.
Ask how soon they can set up a wheelchair appointment. Having one where you just talk and learn/ask questions is valuable and will make the second appointment (the one where you actually order the chair) go faster.
When you find out who your supplier will be
Ask for a catalog from the company for all their wheelchairs and parts (that apply to you). This might be a huge catalog, it might be digital.
Ask if there are any other wheelchair suppliers that you could work with and why this one was chosen. It’s good practice to question everything so that you can have the opportunity to make a better decision
When you find out when your appointment will be
Ask for the appointment to be at least 2 hours. If they can’t do that, ask for 2 appointments, and have the first one sooner.
Ask about what the general procedure will be, so that you can be prepared to talk about what parts you want.
During your appointment
Ask the wheelchair supplier a lot of questions about their service, such as:
Do you have any branches near me?
What times are you open? (make note that if you plan on having a job, their open hours are important)
What is the procedure if the insurance company rejects one of my parts? (and how to fight back and not give in)
What is the procedure for getting my chair after the insurance approves it? Where will I pick it up? What times can I pick it up? (think about how this might affect you if you have to travel the country to get your chair on a Wednesday morning)
(if you don’t know what to get) Based on the things I plan on doing, what have you seen similar people do/get?
(when they take measurements for the dimensions of the chair and the parts) Can you show me what this might look like on me? (they could outline a square to show you the size of your seat)
Which products have the best warranty?
Which products are known to not work or be the best? (this is important, the brakes that I have on my chair are known to be terrible)
Which products are known to be the most durable and or require the least amount of upkeep?
Ask if there is a place to see reviews for some products.
(after choosing all the parts for your chair) How familiar are you with these products/brands? Do you know if there might be any better options that require less upkeep or are more durable?
After your appointment
Keep in contact with the supplier and ask for updates on the approval process and once the items ship, ask to be notified when all the parts have arrived.
As soon as the insurance approves the parts, the time they arrive after being ordered is unknown, still, ask to talk about setting up a time to get your chair.
Talk about where you can pick up your new chair, make sure that it is at a branch location close to you and at a time that works for you.
I recommend buying some fast bearing for your front wheels, the bearings that come with the chair are cheap and slow. Have a look at these bearings and bring them with you when you pick up your chair.
When you get your wheelchair
Once you arrive, look over the chair and make sure it meets your standards and expectations. If anything is wrong with it, immediately tell them and ask what can be done to make the changes.
If all the parts are good, ask about how it was built and what tools were used, i.e. what tools you should have to do maintenance.
Ask about how to fix certain issues, such as if the front wheels become loose and start to wobble when you go a little fast.
Ask about how to change the wheels in the front and how the chair comes apart.
Ask how to fix any of the parts if they break and keep the chair from disassembling properly.
Ask about the procedure if the chair breaks in a major way and needs to be professionally fixed.
Ask about the procedure for getting new parts if one of them breaks prematurely.
Ask about possible modifications that can be added to the chair.
Ask them to measure the chair when it’s assembled and weigh it when all the parts are on it. Take note of this, it’ll be important for travelling.
Look at the bars on the wheels that you use to push, if they’re too far out, ask them to be moved in to make the chair a little slimmer.
If you remembered to bring your bearings with you, ask to have them put in.
Ask for the warranty information for the different companies that correspond to each part. That way, if a part breaks, you’ll know which company to call to claim a warranty on it.
I really hope all of this helps. It’s a lot of information, but this is one of those times that you get once chance to do it right.
This is how my brakes were just a few weeks after getting the chair.
Immediate action item: Write these questions down in your notebook and start asking right away!
Summary:My experience when I got my first wheelchair was less than perfect. Luckily, I learned a lot from it and now you don’t have to make the same mistakes I did. Basically, you have to ask a lot of questions. The right questions. And take a lot of notes!
Overdeliver: One thing you might not think of is the backrest. When it comes to the backrest, you need to really consider what you’re getting. Think of the material, if it’ll be breathable during the hot summers or not (mines not). Think about whether or not it has lumbar support to help you avoid back problems. Another big part is the height. How high up do you really need the backrest to go? I recommend challenging yourself to get it just a little lower than you need so you build up some strength. Another important thing to consider is whether or not the backrest goes to the bottom of the chair. You absolutely want the bottom of the backrest to go down to your seat. If there is a gap, you might be showing the world more than you want to, and in the winter, cold winds will get to you. Make sure to get your backrest so that it only goes up as high as you want and it goes down all the way.
The featured image: It was raining hard after the gym, my friend went and pulled up my car for me and once I got in it, without me asking, he grabbed my chair and took it apart for me, getting soaked in the process.
The short answer is yesno. There is an argument for asking and not asking.
There is a viable reason you shouldn’t ask for help and there are a few fallacies for not asking. There is also a very good reason you should be asking for help.
Real quick, we’ll cover the reasons that are untrue so we can forget about those and make room for the rest.
The myths about not asking for help
If you’re worried about interrupting, so you don’t ask for help, then you’re being silly. I was having tea with a friend of mine at a cafe, we were just having a good talk about our lives and work when a loud tapping noise came from the glass door. I finally knew what it was like for animals when a little kid, ignoring the rules, taps on the glass.
This interruption wasn’t from a little kid though, and I wasn’t annoyed, though our conversation was interrupted. There was an elderly woman at the door and she had to use a walker (to walk), so, she wasn’t able to pull the door open. So, my friend got up, she went to the door, opened it and had a little small talk with the woman and then we resumed.
If that elderly woman cared about interrupting, she wouldn’t be able to enjoy her medium roast, let alone anything beyond a door that doesn’t slide open automatically.
For the most part, we wrongly assume the reactions of our actions. I did NOT think, “that woman is rude and interrupted my awesome conversation, she shouldn’t have done that.” What I did think was, “that right there is a strong woman and I’m happy that she is able to set aside her worries about what others think so that she can get the help she needs.” The only other option would be for the woman to wait at the door until someone snapped out of their caffeine daze and asked her if she needs help getting in. Don’t wait for others to offer help, they’re always willing to help, and you’re more than a good enough reason to interrupt. Remember that.
Invalid reason two: worried about being a burden. There comes a point in every paraplegics life, hell, this applies to everyone, we go through the “nuisance barnacle” phase. A term that I just came up with while writing this. This is where we feel like our relationships are more parasitic than mutually symbiotic. We feel like a burden. We feel that we ask too much of people and are no more than a barnacle. A nuisance to be dealt with.
It’s a good thing babies aren’t philosophical because they’d be all over this one. But no one hates babies, they’re cute, even when they throw up on you.
There are times that we need a lot of help. We feel as though we could never repay that favor someone just did, or we just feel like we require too much help. It weighs on our conscious and we feel as though we’ve lost our last shred of independence. There are times that people will get annoyed with you. That, more likely than not, is a sign that they are perceiving you as needing too much and not trying.
Everyone is familiar with a variation of the quote that says people will help you if you help yourself. We’ll definitely be talking about that a lot.
If someone is getting annoyed with all the help you need, there are three main reasons for this. The first two, you have some control over and I give you the possible solutions for all three.
From their view, you seem to be asking and not trying yourself. I like to try to get up a set of stairs on my own before I ask for help. That way the person can see that I’m trying and putting in the effort instead of making them my beast of burden. If I fail, I will need help, though.
This could also happen if the help is controversial. Maybe they think that you’re more than capable of doing what you’re asking. Don’t be lazy. Don’t get used to having too much help, otherwise, you’ll start asking for help with things you don’t need help with and that will make you weaker. Think of what happens if you wear a neck brace longer than you need to. You take it off and have a floppy neck. Don’t have a floppy neck.
They might not have signed up for this. Maybe they just didn’t know how much the word “help” indicated when you asked if they could help you or when they asked if you needed help. The way I solve this is by letting them know what help entails when I ask. I’ll say what type of help I need and then ask if they mind doing it. If it’s small, like grabbing something off a shelf, then it’ll typically be catered to. If you ask a random person on the street to help you and they blindly follow you to 20 stairs, they probably didn’t expect such a strenuous task, on top of that, they might not be confident in their ability to help.
The one that’s out of your control is their attitude. If someone just got into a fight with their significant other, or maybe their baby threw-up on them for the fifth time that day, then you’re out of luck. It is possible that asking them for help will help them feel better because helping heals the soul. It is equally possible that some people are rude, maybe not on purpose and sometimes entirely on purpose. Maybe someone in a wheelchair had wronged them and now their perception of the entire community is corrupt.
This is all to say: there are good reasons to not ask for help. The two reasons I explained above, being a burden and interrupting, are not good reasons to avoid asking for help.
What is the reason you should not ask for help?
The only good reason you should not ask for help is something I hinted at above. The floppy neck.
You will get used to asking for help, I sure have, but luckily I catch myself or I’m in good company and they know to say no.
Again, this is where the MVP tough love comes in and makes the winning shot. If you surround yourself with people who really love you and want to see you grow, people who know what you can and can’t do (and want to see you increase your “can do” list), then you’ll be on your way to Mach 1.
As I said, you will probably get to a point where you ask for help too much.
There is something I still do, which isn’t totally bad. Whenever I’m in a store and I don’t know where the item is that I need, I’ll ask someone where it is without even looking and it’ll often be within sight. I could claim that I’m not wearing my glasses, but that’s a cheap excuse. Personally, I would rather ask right away and get the answer than waste time looking.
The problem here is that you don’t learn much when the answer is handed to you. You learn much more when you discover something yourself. How will you find out how you can best go up a set of stairs if you’ve never really tried on your own? You need to avoid asking for help when it comes to certain things, what those things are is up to you and your good judgment, which I trust you have since you’re here.
Of course, there is a threshold for what I’m saying, there is a point where you can be stiff-necked. The polar opposite of floppy neck.
With floppy neck, you lose your strength. With stiff neck, you lose your flexibility, that is to say, being stubborn is only good to a certain point.
People around you WILL get annoyed if you insist on doing something independently for too long. In the same way that I reached floppy neck, I’ve also been stiff-necked, so I know what it looks like – ugly.
The point for not asking is so that you learn how you can do more and get the experience needed for more independence. I don’t ask for help before I try something myself. Even in a store, I’ll sometimes grab a box of pasta to help me reach something on the top shelf before I ask for help.
I’ve always been one to try before asking for help, that way, I’m knowledgeable about what can be done, I can tell the person what I did and maybe they can suggest a different way, or at the least avoid repeating what I did. Especially for being in a wheelchair, if you don’t try something yourself, you won’t be able to tell the helper which ways work best. Meaning, you won’t know what you need help with and where you struggle.
If you’re going up a set of stairs for the very first time and you ask for help right away, you’re assuming that the helper knows how to help someone in a wheelchair get up stairs (and that the person they helped before was very similar to your abilities). This is a terrible situation to put the helper in, you just made them responsible for your inevitable failure to ascend stairs (if you’re in rehab, it’s a bit different). You need to try it yourself, then, you’ll know what parts you start to really struggle at and where the helper can best apply themselves. The goal over time is to need less and less help. If the helper is someone you’re familiar with, you can experiment with them and ask them to help a little (or a lot) less each time and if you still fail, they can adjust accordingly and go back to the full heap of help.
What is the reason you should ask for help?
We covered it a little bit, but now I’m going to expand on it. If you’ve watched TV at any point in your life (I haven’t watched TV in years, but I still know this), you’ll be familiar with a scene that unfolds like this:
Dude A is trying to do a comical task that is way above his skill level, Dude B can definitely do it and insists on helping because he recognizes that Dude A will fail.
Dude A has too much confidence and wants to do it himself, Dude B relents.
Dude A tries and fails. Dude B tries to come back in before the situation gets worse.
Dude A still wants to do it himself and pushes Dude B away.
Dude A continues, and in the final act, he ends up hurting himself and those around him. FIN
Dude, that’s not cool.
Dude A gives it a shot, he really tries to do it himself and wants to accomplish this task all on his own. I can respect that, but once Dude A fails, he needs to recognize that he is going to hurt himself, hurt those around him, or at the very least, annoy and inconvenience everyone (beyond the acceptable limits).
Remember how we mentioned the phrase, people help those who help themselves. I did NOT say, people try to help those who help themselves but their help is denied because the person helping them-self is focused on them-self and not getting the job done. Big difference dude.
I avoid saying that I have regrets. But before we’re done, I have a story about a regrettable time, but I don’t actually regret it because it taught me a valuable lesson about being too stubborn and not asking for help.
On Easter day, about 3 months after I left rehab, I had just gotten back from church and we were going in for a lovely Easter brunch. I was a lot different even a year ago, I was a lot more stubborn. I really wanted to master stairs, I had already gotten good with stairs in rehab and I continued to work on them thereafter, but I wasn’t able to do all stairs.
The house didn’t have a ground entrance, it had a wooden porch with steps that led up to it. I really wanted to get up there on my own. I wanted to be able to say, “Head inside and I’ll be there in a minute.” Just as casually as someone who might split off from a group to make a phone call to their family but catches up in a few minutes, I wanted everyone to head inside and not even think twice about my ability to “catch up” in a few minutes.
I tried doggedly because after all, tenacity runs in the MTU blood. My efforts were to no avail and I couldn’t even get past the second step. Everyone just wanted to go inside and eat and spend time together. I tried, I failed, I was nearly in tears. There is a time and place for not giving up, but this was not that. On my own time, sure, I can go back and try until my arms fall off. But when people are waiting on me to just let them help me, AFTER I already gave it my Easter best, that’s when it’s time to hang up the boots and just get my ass inside and enjoy the company.
This whole post is an important one for people in wheelchairs to have in their mindset toolbox, it also applies to anyone who tries anything. If you ever see someone who is a victim of the fallacies we covered, asking too much or not asking enough, kindly share this with them and make the world a little bit better.
Immediately actionable items: Do some introspection and see where some of this applies to your life. Then, take the next opportunity you have to try something new, make sure its something that you’re sure to fail at and then ask for help after you’ve tried.
Summary: Talking about when you should and shouldn’t ask for help. There are some misconceptions about why you shouldn’t ask, but there is also a feasible reason to not ask for help. There is also a very good reason you need to ask for help.
Overdeliver: Another reason that it’s good to ask for help is that people like to help. Think back on a time that you helped someone. You felt really good about it. When someone asks to help you, unless you really want to do it yourself, take them up on it and it’ll make your life a little easier and it’ll make them feel good. Don’t deny someone the feeling of goodness if you can give it to them.