Talking to someone with an accent. We all hear it, but should we ignore it or mention it?
If you’ve been somewhere that considers the way you talk as having an accent (obviously its normal where you’re from), then you’ll have experienced that the first thing almost everyone says is something about your accent.
How do I know this?
I was in a coffee shop and saw someone wearing a hoodie with my – our – uni logo. I went up and said hi, we talked for a while and now we’re the best of friends (based on my analysis). We were having lunch or something and were talking about the first time we met and she mentioned that in her mind, she thought, “he didn’t mention my accent, YESS!!”
I definitely noticed it. I just didn’t think about bringing it up. But of course I was curious, and after talking for a while, I learned that she’s from Joburg (South Africa), not from asking about her accent, but in casual conversation about whatever and anything else.
With a name like Cosmo Socrates, rivaling names as unique as Elon, throughout my childhood I’ve gotten praise and jokes. I’m acclimated to being asked about my name and where it’s from (Greek), most people can’t refrain from vocalizing some observation about it. Seinfeld.
These two seemingly irrelevant examples – accent and names – are all to put in perspective the question of how do you talk to a paraplegic? How to strike a conversation with someone in a wheelchair, properly.
Some people have mentioned that someone once said “so, you don’t look like you need to be in a wheelchair,” and that can invoke some anger (it did), but really, I see it as someone who just doesn’t know what to say, wants to be nice (a failed compliment), and are interested.
In my experience, the best way to begin asking about someone’s injury is always with “If you don’t mind me asking,” and then followed by “how did you get injured?” or something in that discourse locale. Even though I personally never do mind, it’s polite and shows that you understand it could be a sensitive topic – respect.
It may have been a traumatic experience, and by definition, won’t be pleasant to recite and relive every time someone is curious. So that’s where the “if you don’t mind” part becomes important.
The environmental context is probably second only to trauma – that is, is it even appropriate to ask given the longitude latitude?
If I’m in the gym, I probably don’t want to tell you all about how I got injured, the details and my life thereafter, I just wanted you to spot me and then tell me I look good. Similar for being in the store or parking lot and about to get into my car. I don’t mind the interest, but similar to someone with an accent, it becomes trite, sometimes inconvenient, and irritating to a point – having to explain how I got injured to everyone and their mother. This is one of those arguments of my time isn’t more valuable than yours, but equal and I just don’t want to say this story again.
The story doesn’t always have to be long. I have my one word explanation – “skiing.” Which leaves a lot to the imagination but resolves the curiosity. Likewise, I just say, “Greek.” if someone asks about the name. If you get a one word answer, that’s probably code for, I told you and let’s leave it there.
If you do find yourself post-mortem of saying something that pluck a nerve, you can always save yourself and say, “sorry if that’s rude/the wrong approach, I’m just interested.” People love when other people are interested in them.
Mystery isn’t a dreadful thing either, after all, satisfaction is the death of desire. If the probability of seeing someone again is likely, then leave the story for the second, third, or never time you see them. It will come up in conversation at some point and you’ll be able to focus on the most important exchange – learning about who they are as a person. You might think of it as dialing a wrong number, but not awkwardly. Just talking and learning, you have no face for that voice – no body either.
If you get to know the person first, they may be similar to me and have a website and YouTube where you can read/watch/listen to the story and relieve the mystery itch on your own.
Short answer: The best way to ask or bring up the topic is to just get straight to it. One thing you can be sure of is that it’s not the first or last time they’ll be telling the “what happened” story (results may vary).
Personally, I’ve never has anyone ask me about my injury in a rude way.
For those reading who are in wheelchairs, though there are rude and creepy people, most people who ask about your injury, whether it’s an elegant or off-putting performance, at its core it’s just someone who’s interested in you. It may well be the first time they’ve talked to anyone in a wheelchair or asked someone. Don’t mistake ignorance for belligerence.
There it is. My two cents. A while ago you could get a ride on a horse while your mom checked out at the market. Now, it’ll get you much more. (results may vary)
Immediate actionable items: If you’re in a wheelchair, it’s a good idea to have the short, medium, and long version of your story or a scripted way of saying “no” when asked. If you’re not in a wheelchair, maybe practice with leaving some open loops in your conversation, give mystery a chance.
Summary: When it comes to talking to someone in a wheelchair, there are best practices and considerations. Starting with “if you dont mind me asking,” is always great, being aware of the fact that your curiosity is not more important than the other persons time and it may be best not to ask depending on where you are (in the gym and places like that).
Overdeliver: I can’t think of anything. Usually I leave something out and put it here if it doesn’t fit like clockwork. I suppose it’s also important to know that people in wheelchairs are just people sitting down and you should take some interest in them before their injury, otherwise it’s quite one-sided – your interest and just their trite story.
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.
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.
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?”