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.
I’m part of the lululemon collective and will receive a commission if you make a purchase through the links below
Every week, I look around and see what type of gear I’m using or anything I’ve come across that’s cool and useful. Something that has made my life easier and solves a problem I’ve had for too long.
I’ll be keeping these fairly short with one tool/gear item that I’ve used and I’ll talk about how it’s useful (solving some problems).
There are many ways to use everyday items in a unique way. As an engineer and minimalist, I like to use what I have and see if I can make it work. It’s a fun little challenge that keeps my brain sharp.
Today’s tools are belts, created by Arcade and lululemon. We have two styles, two problems and infinitely great ways to use them.
The problems we solve:
So, I have a strap behind my legs that keeps my feet from sliding off the back of my footrest, but I spend my entire day pulling my feet back on the footplate after they’ve slid forward as a result of bumpy pavement or sidewalk cracks.
Pockets. Pant pockets are near impossible to use while you’re in your chair. I often go out for a walk and need to carry my keys, wallet, catheter and phone, but they’ll either fall out of my pocket or wont fit. Keeping them on my lap becomes a bit much and they easily bounce off.
Luckily, we have a solution for these problems, it’s more than a solution. It’ll tell the world that you mean something, that you’re on your way to success! (and you’ll feel as amazing as you look)
Contrary to popular belief, I’m a man who cares about style and presentation. Even if I do wear the same few clothes over and over again, I want them to be high quality clothes.
The Arcade belt.
It’s made for adventure, it’s durable, and it’s personal. There are many different styles for every mood and season.
This belt solves all of our problems. It’s easy to take on and off, it can even be useful when we’re not using it (like using it as a belt). It comes in many sexy designs, which means we look cool and get to show off a little. The size is adjustable so you can keep your legs where you want them. It’s a lot more versatile and when you watch the video below, you’ll see how it doesn’t actually wrap around where my other strap is. Best of all, the clip is super easy to put together and unbuckle. So, even if you struggle using your hands a little, it’s not hard at all!
This Fast and Free Run Belt is perfect for keeping your keys and a few essentials ready to grab and toss on before you head out (keys are small and valuable, they easily fall off my lap)
The On The Beat Belt Bag is big enough to hold more essentials (even a catheter or two) and even though the model is a woman, I would proudly wear this as a man.
Try this gear out and let me know how much it helps!
(Just some over delivery) This is my “efficiency outfit” I can wash less with the anti-stink tech, they dry fast (I avoid the cost of using a dryer), makes the perfect first impression and I feel like I can do anything (I can go to work and then workout without changing)
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.
Let’s make this quick. I should be studying right now but I became so enticed with the idea of sharing this that I couldn’t resist. I also used a very grainy picture and I’m not ashamed.
The list is simple. You have 2 sections. One for what you will do in a wheelchair and one for what you will do when you are out of a wheelchair.
PS, if you’re not in a wheelchair, this applies to any dichotomy in your life. Maybe you have a broke leg or something that has a before (right now) and after (in the future). It can also apply to being in quarantine.
Why do you need to make this list?
There are many psychological reasons to do this type of thinking. We’ll talk about the benefits of this list along with some explanation of what this list really is.
This list is ever-growing. I call it the Dual Dreams. But don’t let the word “dream” confuse you, these are actual goals that we will actually achieve. Convince yourself of that right now. Before you even know what this list really is, it’s important that you let the benefits of psychology take over and truly believe that this list is not some cozening list full of pretentious, drivel hopes that we retreat to in tough times so that we can take our minds to a mythy world. This is about real life, not mystical fiction.
You can also call it the “twain aims” list if you’re feeling fancy and the rhythm is within you.
Here are the two main benefits that I get from having this list, and there are probably a lot more.
I would even recommend printing this list and posting it up on your wall next to your bed or somewhere in sight.
The first benefit is that it will give you hope. When things seem down, maybe you’ll never walk again, take a good look at this list, visualize yourself doing these things and remind yourself that it is your goal and your mission to walk once more. Don’t allow this list to dispirit you, instead, have it imbue you with excitement for the future and remind you that you CAN and WILL do these things. Even if everyone is against you, you will prove them wrong!
The second benefit is that it makes you seriously consider and challenge what you can do NOW. Never get caught up in the pernicious feeling that life is over and you can’t do anything anymore. Maybe you won’t be able to achieve the “Things I’ll Do When I Walk” list right away, but that’s why we have the other section. You are forcing yourself to challenge what you can do while in a wheelchair.
This list excites me beyond exposition. It reminds us that we can still achieve a lot while we’re in a wheelchair and that life is pliable, we shape it with our actions and mind. If you perceive your life as over, everything will soon reflect your philosophy.
How do you actually construct this list? What does it look like?
I recommend making the list of things you’ll do when you walk, or gain some degree of ideal mobility back, first. Make this list ample. Be creative and think big. What else will you do? Think small?
After you make this list reflecting your wildest dreams, explicate and challenge each item, give serious thought to whether or not this is something that can only be done after you’ve recovered.
Sometimes, I’ll think of something new that I really want to do and write it down in the “recovered” section but then realize that I can totally do it this week if there weren’t issues with money or some learning curve. So, I take the ambition and move it to the other side.
[Aside] This list actually started off as just a list for what I’ll do after I walk until I realized how powerful it will be if I add the “while injured” section.
This is a real list, some of the things on this list will be humdrum, but they are nonetheless important to us. You may not think that playing volleyball is all that grandiose, but for me, it’s something I really enjoy. I’ve never shared or told anyone about this list and now I’m going to reveal it to the world. Remember that this is MY list, based on what I like and how I want to live my life, we will have big and small things, so long as they are important to us, and we intend to complete them as if it’s life’s dictum.
Here’s what MY list looks like. There are some things that we could belabor on whether or not they should be on the “Walk” side of the list, but we won’t.
Remember that the things on the list are for you! (I’m saying it a lot because it’s important)
For me, I know I could ski while still in a wheelchair, and I might. But when I say ski, I envision the type that isn’t in a wheelchair/adaptive skis, and that’s the type of skiing that I want to do. I also want to live in an RV and drive around. That one was in the “recover” section until I realized that what I envisioned could easily be done in a wheelchair and it wouldn’t impact the reason I’m doing it (explore, travel, learn and have fun). I could technically travel to Greece in a wheelchair, but I wouldn’t be able to do the things I want to do (lots of stairs in Greece). I think you get the point.
By the way, this list is in an iPhone-only app called “Bear”
Immediate action item: Make this list right now!
Summary: Create a list with two sections: Recovered and Injured, then write what you’ll do for each part of your life. This is a must have list for anyone in a wheelchair. If you’re not, then I still recommend making the list based on whatever dichotomy is present in your life. It’s helped me a lot!
Overdeliver: Even though I’ve kept this list private, until now, I have gotten involved in the communities for most of these topics and then I inform people of my ambitions (naturally, in conversation) and they are always wanting to help. Take flying for example. I went to EAA Oshkosh and now I know many pilots or retired pilots who want to help me and see me succeed. I’m very grateful for all of them and the only thing really holding me back is the money and the ability to prioritize the apposite time commitment to flying. Remember that everything you’re doing and not doing (within your physical limitations, but even that’s debatable) is a representation of how you prioritize.
PS: PS can be Post-Scriptum or Pre-Scriptum, language is malleable
When you first see your doctor or nurse after getting paralyzed, your mind is flooding with questions and thoughts.
We’re going to start with a quote to set the mood.
By the way, if you look closely at the featured picture for this post, you’ll see that my doctor and I are matching with turtle necks (also socks but that’s cropped out)
I asked him a lot of questions.
There are a lot of questions you should be asking yourself and the people around you. In this post, we’ll focus on the first few days after your injury and some key questions to ask the nurses or doctors.
Keep in mind that these are not all the questions, but they are questions that I’m glad I asked and some are ones that I really wish I asked.
NOTE: I’m going to say doctor for simplicity of writing, but you could think of it as meaning doctors, nurses, therapists or anyone in the medical profession.
A lot of people will ask “Will I walk again?” and the doctors will avoid a definite answer. They truly don’t know. Sometimes it may seem like you will walk, but your injury might be just enough so that you don’t. Everyone truly is different in regards to their body, injury and how it recovers.
Asking if you have a chance to walk again is not going to get you anywhere, doctors don’t want to give you false hope and then become your outlet for hate. They didn’t do anything other than give you an answer to your question.
Remember that doctors know a lot, you have access to years of experience, research, and schooling. Think of all that they do know. They might not know the future, but here are a few good questions that could give you better answers.
Questions for your journey to recovery
What can I do to improve the odds of walking again?
Do you know about any resources I can look into? (books, articles, etc.)
Are you familiar with any medical devices that might help me recover?
Do you know anyone else who is? (always get more than one opinion)
Are you aware of any herbal medicines that could help or resources where I can learn more?
These questions go a lot deeper than the yes/no “will I ever walk?”
Now that you’re in the world of SCI, it’s important to know more than the average bear.
Make sure you know about your injury. Look at the x-rays, ask the doctors to tell you what you should be looking at. You could even have them draw on the paper copies and annotate them.
Questions about your injury
What was the procedure of my surgery? (a summary of what they did)
What is my injury level?
Typically, what does an injury of that level entail?
From the surgery, what tools were put in? (I have metal rods in my back)
Is there anything I should watch out for, concerning the tools?
Is my spinal cord bruised or severed?
How does the spinal cord heal?
Where on the spinal cord is the damage?
Does this area typically relate to a certain function?
What type of injury is this? (this is meant to be for the vertebrae and spinal cord, it could be a fracture or a burst or something else and the spinal cord might be severed or bruised)
Asking questions like these is only good if you remember the answers.
Personally, I like to take notes in notebooks.
These are some great notebooks for you to document your journey and thoughts:
Another important topic to cover in the early days is considering your health.
Now that you understand the fundamentals of your injury, how the spinal cord works and the options you have that pave the road to recovery, you need to learn about the effects.
What types of changes can you expect in your body? What are the potentially bad things that could happen and how can you reduce the chance of it happening?
It’s important to start considering your health immediately. Your body is going to change in dramatic ways.
This doesn’t mean life is over, it only means that your priorities are going to change. Team Cosmo is known for being able to adapt to new situations and flourish!
Questions about your health and body
Assuming that I don’t gain any more movement than I have right now, what types of changes are likely to happen to my body?
When will I know that my body is near finished healing? (Since my spinal cord was bruised, I asked this and was told that the majority of my healing will happen within 5 months)
What are some changes I should be aware of that might affect me the most?
What can I do to improve my health and make sure that my body is in its best possible condition? (diet and exercise/stretching)
What are some things that might arise? (give an example like muscle spasms or nerve pain)
For that/those issues, how can I best deal with them? (diet, medication, best practices)
Remember that these questions are not all that you can ask. I see these as the bare minimum. There is never a bad time to ask your doctor these questions if you don’t know the answers yet, but I recommend that these types of questions are asked as soon as possible after an injury.
I plan on writing more posts that cover questions to ask in rehab and anywhere else that might help.
Remember to share this post, you never know who could benefit from this. Helping heals the soul.
Immediate actionable items: Write these questions down and brainstorm more of your own. Comment down below some good questions/answers you’ve come across. Most importantly, ask these questions and document the answers. Don’t rely on your memory, this is important information.
Summary: Asking the right questions is important. Here are three categories of questions designed for the early days after your injury. Questions about recovery, injury, and health & body.
Overdeliver: Whenever your doctor does something, either prescribes medication or advise you on something. Remember to ask why, but asking “why” can sometimes come off as if you’re rejecting their expertise and it puts them on the defense, try to phrase the question similar to these, “I’m curious, what’s the reason for that?”, “What is the benefit of ____?”, “Can you explain that?” , “I’m not sure I understand. What is this for?”
At the beginning of my journey, I was in the hospital (of course), and I was extremely uncomfortable with everything. The thought of a catheter makes anyone squirm, even at this point, over a year after using catheters every day, I try not to think about it.
I’m not as manly as you might think. For the 6 days, I was in the hospital after my surgery, I hated when I had to “cath.” I would take a pillow and put it over my face and tell the nurse to just tell me when it was over. Even though I couldn’t really feel it, I was afraid that I might.
Just a few days before, I was walking and NOT using a catheter, I didn’t even know what a catheter was.
I took it to an extreme. By the third or fourth day, I was down from four IV’s to just one. I didn’t need much of any medication. However, I was so terrified of being able to feel the catheter that I still took pain killers. I demanded it. I didn’t need them at all, though.
That’s how scared I was about feeling the catheter.
Right now, I’d go back in time and slap myself.
Don’t make the same mistake. For using a catheter or anything, really.
When I went to rehab a few days later, I knew something had to change. I realized that I can’t be scared about cathing if I expect to recover and gain my independence back.
The very first day, the nurse who came in, his name was Caesar (his name is Caesar), I told him that I need to cath (it was a long ride from the hospital to rehab) and that he needs to teach me how to do it.
Two mistakes I made in the hospital:
I didn’t take responsibility for myself and I avoided doing what was necessary
I didn’t learn how to be responsible for myself
Some of you might not physically be able to cath, that’s totally fine.
The point here is that you have to do everything you’re capable of doing.
In the hospital, I could have asked the nurses and doctors about how catheters work, best practices, and how to do it.
Visualize what life will be like once you’ve recovered. For me, it involves living a life of freedom – traveling and exploring. I might buy an RV and live a life of touring the country. If that happens, and I hope it does, I will probably have to poop in the woods at some point.
When I was scared of cathing, did I expect someone else to do it for me my whole life, when I absolutely can do it for myself? Honestly, I can’t understand why I was even okay with someone else doing that for me.
It gets a little worse.
A catheter is only for #1. What about #2?
This next part is 18+
Don’t continue reading unless you’re prepared to feel uncomfortable.
If you’re not 18, but in a wheelchair, then you’ll probably be familiar with this, so for anyone in a wheelchair, this is another day in the park. (Not that it’s nearly as pleasant).
For me, and it may differ drastically for everyone, this is called the bowel program. I came up with many names, such as “poopy program” or anything that didn’t sound so medically uptight. After all, I already had a finger up my ass.
It took me much, much longer to accept that I had to “manipulate my bowels.” I don’t remember when I first did it myself, but if you’re patient and a fast reader, I probably mentioned it in one of my Instagram posts.
This is one of those things that I look back and shake my head a little. I don’t remember if I ever pooped in the hospital, but before I tell you about my first time doing this myself, here’s how it worked in rehab when I didn’t do it for myself.
At a set time every night (rehab was very regimented), I would grab my fancy hospital bed remote and press the button I was all too familiar with. The SOS. The help button.
The nurse assigned my room would come in. We always bantered and had good conversations. They would grab the incontinence pad unless I already had one under me. It’s pretty much a square diaper. I would take off my diaper. By now, the door was shut and my Mom had left the room, thank God.
The first step for the nurse was to put on some medical gloves, then some medical lubricate on their finger and while I lay on my left side, go in and clear out the colon. Then, with the “ready to go” stuff out, we wrapped it up in the incontinence pad and like planned magic, there was another pad underneath. Part two is that a laxative was put in and the nurse left, waiting for me to call 15 minutes later to take the second incontinence pad, wrap it up and we’re done.
Nurses were both men and women. One time, I played this song as one nurse came in. Luckily, she thought it was funny. Even when a nurse is coming in to put their finger in your butt and pull out poop, you can still be lighthearted.
This went on for a lot longer than it should’ve. If you’re reading this while you’re in rehab or even still in the hospital, then I’m happy.
I want this message to get to as many people as it can early on.
This was something that I just couldn’t accept doing for a long time. It was outside of my comfort zone. This was astronomically out of my comfort zone. I didn’t expect it to be done for me forever and again, I was completely able to do it for myself. Because of that, I can’t imagine why I was so much more comfortable with someone else doing this.
The first time I did my own bowel program
I had prepared. The past three or four nights, I wasn’t just lying on my side in silence. I was asking for gruesome details. I knew that I needed to do this on my own. In rehab, they also have standards they hold you to. They expect you to progress and have thresholds for how long you can be in one spot. I had reached the limit for how long I could avoid doing this.
It was the nurse that I carelessly whispered who came into my room and told me to get up and do it myself. Instead of doing my bowel program on the bed, which would’ve been a lot harder, she had me get into my wheelchair, go into the bathroom and transfer onto the toilet commode (a cushioned chair with a hole in the middle). At this point, she was giving me the tough love that I am more than thankful for. I live for tough love. She wouldn’t believe me that this was actually my first time and that I still didn’t know what I was doing.
I double gloved. I wanted to put as much distance between me and this process. Two gloves was the best I could do. After that, I put on the lubricant and manipulated my bowels.
A quick note: while I was doing this, the nurse told me that sometimes this will cause people to pee and that sometimes people peed on her! It takes a brave person. She was still helping me and making sure to coach me through this unthinkable process, so, she was sitting right in front of me. You can use your arm to point “it” down while you do this (doesn’t apply to women).
Ever since that day, I’ve been doing the bowel program myself. I only wish that I had done it myself a lot earlier than I did.
Immediately actionable item: Ask yourself, am I avoiding doing something that I shouldn’t be? Set a plan to do it today, or begin the process today.
Summary: Don’t hesitate cathing or your bowel program. Do as much as you can early on. You’ll have to do it on your own at some point. I waited way too long to do some things on my own. It takes a lot of courage, but it’s something you need to do.
Over-deliver: A lot of people won’t give you the tough love you need. They’ll give you the easy way out and help you if you ask. If things seem too easy, ask for tough love.
This is my first “blog.” I wanted to at least have one or two for you when you got here.
I’m hoping to have at least one blog post per week. They may be short, like a little paragraph weekly challenge or long enough to split into two separate posts. I’m focusing on two things, equally ranked: give value, have fun. I enjoy giving value, so, having fun while doing it should be easy 😉
I’m extremely excited! Not only am I able to reach and help more people, but I’ll improve my writing skills, and I really enjoy writing.
Even though I don’t have much in terms of blog posts, all the pages on this site have a lot of new info on them, stuff I haven’t talked about on Instagram or YouTube. I think the Cosmo page has the most on it. I had fun writing that one.
As I’m writing this, I just finished recording about 20 minutes of video content for Instagram.
I’m in Australia and I did a campus tour & talk. All about my time hear up to this point. More or less rambled about my time here, and ranted and raved about the nature on the the campus. It’s probably a little cringey but I was just free flowing, having fun recording some videos.
I’m also putting this blog in every category that I’ve made so you ‘ll have an idea of what kind of topics we’ll cover together. More will be added over time.
For now, check out my Instagram and YouTube after you’ve gone through all the pages on this amazing website!
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