Wheelchair DNA

For those who were paralyzed and confined to a wheelchair at a point in their life when they had already established a mature, adult identity, it is undoubtedly a change so dramatic that it takes a lot of time or a strong will to put up with the ensuing endeavors. Most people, once getting injured, take years to fully accept and lean in to being paralyzed.

What does it look like to “lean in?” Well, there is a certain subset of the wheelchair community that is very content and happy. They do pretty much everything that anyone else who leads a fulfilling life – involvement in some type of community, working in some way, and having enjoyable experiences (to list the main things).

It may be years or many months of depression. Yet, they made it through and didn’t kill themselves. Why not? I’m sure there are some people who have, and even when considering everyone alive right now who has been through depressive times for any reason, what is keeping them alive?

It comes down to some form of hope and or a type of “meaning to life.” This is what some people, such as John Vervaeke and Richard Feynman, have talked about.

When I was injured, I was able to avoid depression entirely and jump right into doing many things very early on because of two main factors: I had (still have) an unwavering belief that I would walk very soon, and I have an extremely supportive community of friends and family that compounded my optimism/attitude. That was the hope part. In terms of the “meaning of life,” that came from my Stoic/mindfulness beliefs, mainly that I can only do my best now and accept the moment as it is. This is what allowed me to really avoid being sad because I was able to say to myself, “alright, here I am and I have no time to be sad because I have to get on this flight alone or travel to a new country to live for a while.”

For a given reason, and it doesn’t matter what so much as there is one, people like to be alive in any condition. The hardest part is getting out from under the negative beliefs. This is why it may take years for someone who just got injured to really live life as they want, and let the wheelchair just be a small detail, not an insurmountable obstacle. It might take another person to be their friend and help introduce them back into social life. And then once they have a good support group, that will give meaning such as “there are people who want me to be happy, I should let go of my sadness.”

I don’t actually have advice for why continue life in a wheelchair, there are lots of reasons to continue living in any capacity. What’s important is understanding that everyone has a belief system that will push them to endure anything, and many people have done this while confined to a wheelchair. The difficulty (sometimes) is developing this “system of meaning.” The best way to develop some type of belief system is to learn about other people’s and take all the pieces that make sense to you, and then hang on tight.

Don’t be naïve.

When I was first injured, someone had told me to be cautious about people online who would be very interested in my feet or something.

This was good advice. And I should say this sooner than later, there’s nothing inherently wrong with someone who has a fetish for feet or a person that’s paralyzed.

The advice is about being naïve. I’ve gotten many messages that only make me empathize with women more and more. Messages that are completely unsolicited and sexual in nature such that it makes me very uneasy.

No, I will not be your foot overlord.

Just how a modest woman who posts on Instagram has to be sure to avoid showing parts of herself that would feed the attention in an unwanted direction. I’m cautious to not show my feet or anything that could provoke someone in a way that I definitely don’t want.

Again, if you want to embrace this you could probably make some money. Personally, it’s just against my morals and values.

And the people who message me, they aren’t bad people just because they want to see my feet. I’ve gotten messages not about feet, but equally bad. From men and women.

What’s not good about it is that it’s unwanted. Just how a woman might get unwanted pictures or messages. Same thing. The person can think what they want, but when they act upon their thoughts and send a message, that’s when it’s not acceptable.

So, don’t be naïve. You have to, at least, know what’s going on so that you don’t get into an undesirable situation.

When I say wheelchair users, I don’t mean the elderly population, I mean people who cannot move their legs or walk properly from a spinal cord injury (SCI) or anything else.

When I say evolution, I mean my perspective on how the attitude of the wheelchair-using community has changed over time. Though I admit I’ve done no research into this, I’m talking very broadly, which I’m confident is safe.

The conclusion, which is actually an excellent place to start this, is that the wheelchair population has evolved to be more confident, more accepting, less shy, and less sulky.

If we go far back enough, people with an SCI just didn’t survive, and the same goes for those with anything that put them in a similar situation. After enough time, healthcare improved and people were able to survive, soon after came the invention of the wheelchair. From there, we assume it was not great for those in a wheelchair. My assumptions here are that the social norms coupled with the lack of accessibility for wheelchairs would make life much much more difficult. Think about medical supplies, housing, lack of elevators, traveling, and so on. All this can negatively impact the mentality of someone in a wheelchair, especially any dogma in a society where people in wheelchairs are seen as lesser since they can’t go around as many places, maybe can’t even attend school, and maybe the hygiene is poor as well.

People in a wheelchair may gain self-confidence issues and be very unhappy with going in public, even hesitant.

As I see it, today more than ever before, the wheelchair community has evolved to be much better, and below are my thoughts on why/how.

But wait, I must say a few things to consider. There are more people today in the world overall, which means that even if the per-capita amount of wheelchair users have stayed the same, there are more people in a wheelchair overall. With more people, that means there is a larger likelihood of having a… how do I say this? Basically, it’s the law of large numbers. What I mean to express here is that with more people in a wheelchair, the percentage of people in a wheelchair and depressed will begin to reflect what it actually should be. Here’s an example. Let’s say it’s documented that there are 1,000 people and 100 of them (10%) are in a wheelchair and 2 (2%) of them are depressed. Ok, but does that mean in 50 years when there are 100,000 people and 10,000 people in a wheelchair, are 200 of them depressed? Maybe, but now we do a survey and find 600 of them are depressed. that means the 2% went up to 6%, but that’s because the larger sample size means we get more accurate and representative numbers. If you survey only a few people, it can’t give you an accurate representation to project to a larger sample size.

Here’s why people today are more confident.

• Medicine has improved, so the recovery is not only improved but the technology to help with the situation, such as more advanced catheters
• Physical therapy has also improved with machines and knowledge, which helps with recovery as well as building strength, etc.
• Accessibility has improved greatly, which means people in wheelchairs can do nearly everything other people can do.
• Technology in general, such as social media platforms, has helped people build communities. This helps increase confidence as well as many other things.
• Economically, since there are more people in a wheelchair, businesses can now feasibly be created that manufacture equipment such as hand-cycle-bicycles, as well as motorized wheelchairs.
• The job market – especially with working on a computer – has increased the available jobs for someone in a wheelchair.
• Because of all this, people in wheelchairs are able to contribute and get involved in society much more. That leads to greater social acceptance. This includes having models in wheelchairs.
• Sports have become more adaptive, leading to greater opportunities for someone in a wheelchair to get involved in sports, which helps with fitness, making friends, etc.
• Some of the things I mentioned above, in my experience as a US citizen, come from the Americans with Disabilities Act.
• I almost forgot to mention that the United States of America had a president, Franklin Delano Roosevelt, who was in a wheelchair.

Today, I think there are more people per capita that are wheelchair users. This is likely from the advances the human race has made in all fields. One part is that people can now survive injuries that would otherwise kill them, and the other part is that there are more ways to get injured. However, an argument against this is that we have also dramatically increased safety in all fields. So maybe it’s the same per capita but just more people because there are more people in the world.

Do people still feel awkward in public and refuse to wear shorts? Probably. But probably not as many people as before.

Today, there is so much accessibility that, in my experience, I can live a life almost as I did before I was in a wheelchair. I have been able to conquer (if I had to) all the classic things someone might face when their life is changed dramatically by sustaining a spinal cord injury. BUT… I am now faced with the problems anyone encounters – irrespective of being in a wheelchair, but very respective of being human.

As I see it, there are two types of people who are wheelchair-bound (assuming paralyzed). There are those, such as myself, who had pretty much an entire life prior, and those who had the majority or entirety of their adult/child development in a wheelchair.

Within these two high-level categories, there are sub-category variations.

• What physical functions exist – such as arm movement, abdominal control, etc.
• How it happened – mainly, by a personal decision or outside force + if it was particularly painful.
• What type of life you had prior (if there was a prior)
• The environment – literally the part of earth you live/grew up in
• The people around you, i.e. the support system
• The type of injury – complete or incomplete spinal cord injury (meaning severed spinal cord or not), or some other cause.

All of these variations make it difficult to give exact guidance for self-acceptance because every variation means a new path.

My goal here is to help you begin a path toward self-acceptance and to articulate clearly. I’ll try to make it as applicable to every variation I can think of.

To start, let’s clearly define what is meant by self-acceptance. Ok, let’s come back to defining “self,” and start with acceptance. In this context, I think we want acceptance to be permanent. Not fluid, not changing. It’s a belief – yes. So acceptance is a belief, it’s something we acknowledge in the best way. “I accept X” may not mean that I think it’s perfect, but I believe it to be what it is, I acknowledge it as it is, and so I accept it – to be true, or if it’s a gift, to allow it to become part of my life (a blanket or something).

Now when we say self, what is our “self”? It’s a few things. Let’s list some ways to think about it:

• The self is my identity – I am a person who… (does…, thinks…, says…, looks like…, perceives the world to be…, believes…, values…, etc.)
• The self is my consciousness – chop away everything except my brain, I am here in my mind experiencing what’s outside my mind.
• I am not what I think I am, and I am not what you think I am. I am what I think you think I am. – Charles Cooley
  • Similar to the first bullet but the source of the identity comes from without, not within.
• The self is the conscious experience in the present moment only

That’s enough for now, you can choose one of these, or create your own version of what is self.

When we put it together, we get this: I acknowledge who I know myself to be at this moment.

Sadly, this is a lot more fluid than I would like, who we know ourselves to be can change quite a bit depending on what we’re thinking of. I may not know myself to be a writer (blogger if you will) until I’m consciously thinking about how I have a website and I write for it. Because of this, if we’re in a bad situation, we very well may not accept ourselves at that moment. Now I feel like we’re going backward. Perhaps not, accepting who we are in each moment should be different, and we shouldn’t always accept who we are all the time, otherwise, we wouldn’t have the desire to improve.

Alright, now we’ve got two categories of self-acceptance – the moments where we are content with who we are in that moment and the moments we are not. This is good, let’s work with this.

How about moment-acceptance? And by moment, let’s just say 1-5 seconds. Every moment we’re in, no matter what the state of our consciousness is, there is literally nothing else we can do other than accept it to be exactly what it is (to us). If you’re in a wheelchair and you fall over in the middle of a crowd and feel embarrassed. Damn, maybe you’re embarrassed, but that is the exact moment you’re in, and the next moment you may be getting up, and the next moment you go continue on. We can take a moment to think about what to do the next moment, and that’s a good thing to do, but while you’re doing that thing, you still must accept that moment of doing.

Alright, so we have moment-acceptance, and it’s fair to say that in every moment, we ARE the moment. That moment, as we perceive it, exists in our heads and always includes us. When we die, the world dies (as perceived by us). There isn’t a choice when it comes to accepting the moment for what it is, and since we are within that moment we must accept ourselves as we are. Quod erat demonstrandum. I make my point.

What about the moments that we don’t want to accept? This is the root of what we mean by self-acceptance. To minimize the moments where we are unhappy with ourselves or the situation we’re in. It’s easy to be self-acceptant when the situation is good, but it’s hard when the situation brings forth every possible issue that being in a wheelchair has to offer.

One of the best ways to do this is to find the cause of these moments and eradicate it. In our case, this would mean having a significant recovery from a spinal cord injury. If we found out this is possible, then self-acceptance for being in a wheelchair would be known to be temporary, and a lot easy to accept.

If you’re cold and turn on the heat, accepting the cold is easier because you know it’s ending. But what if the cold is indefinite? Get a big jacket.

What is this big jacket?

Well, this is where it gets very personal. Learning when we feel poorly and find it hard to have self-acceptance in a moment is the most important first step. When you are in these moments, this is when you say to yourself “I don’t accept myself as I am right now.” Perhaps this is the falling in a crowd situation. It’s fine to not accept yourself at that moment, but only if you’re going to do something about it. Wear a seatbelt for the wheelchair more often. Get fit/strong so you can have better balance or get back into the chair on your own.

If there were one thing more than anything else to help with self-acceptance, it’s being around others who accept you but also encourage you to improve. What they will show you is that they don’t even care about some of the things you’re self-conscious about, but at the same time, will encourage you to grow beyond it.

In conclusion, if you’re in a wheelchair and trying to find self-acceptance, this is what I’ve tried to teach you:

• Understand what is meant by self-acceptance. If it’s not clearly defined, you may never achieve it. If you still feel like something isn’t right, now you know that self-acceptance is not the place to continue looking.
• Know that you don’t always have to accept every moment BUT that is a sign to change something, not to complain and sulk without taking action to change.
• If you’re unable to accept something that also CAN NOT change, then you must change yourself to make it enjoyable, or accept it.
• Self-acceptance in a wheelchair is hard, if the injury is later in life, this will require an identity change on some level. However, there are many opportunities to continue, say basketball, after a spinal cord injury.
• Surround yourself with supportive friends and family who accept you on a level deeper than the physical. This will help you understand that your identity is MORE than being in a wheelchair. For example, the intellect does not care if you’re sitting or walking.
• The opposite of self-acceptance is self-consciousness i.e. what are you insecure about?
  • If you struggle with self-acceptance and the root cause is insecurity, get very clear with yourself about where this is coming from. If you’re insecure about how you look, that is another way of saying you care about how you think people judge your appearance. This can be a drive for change, or an epiphany to stop caring what others think.
  • An example here is being short and obese. You can’t get taller, but you can get fit.

1. What is Warmth?
2. Socks
3. Electric Heating
4. Alternative Foot Heating
5. Boots
6. Bottom Layers
7. Top Layers
8. Gloves
9. Hats

Here I’m going to lay out from head to toe the philosophy and best (subjective) ways to stay warm in the winter for paraplegics.

First, I must tell you about science and philosophy related to staying warm. As a scientific man myself, I like to approach the world through physics.

What is Warmth?

From a scientific point of view, it makes no sense to say “warm jacket” or “warm clothes,” it would actually be “good-insulator jacket.” Warmth (heat), is generated. Clothes don’t generate heat unless they have an electrical system embedded, but even then, the clothing itself doesn’t generate heat.

Clothing, especially winter clothing, insulates. It prevents heat from leaving your body as fast as it normally would. A warm jacket does not warm you up, your body was always producing that heat, but now, it’s staying.

Just about everyone paralyzed has cold feet. Any amount of insulation will not warm up said feet. Even if it’s 70℉, my feet will often be cold. In that case, wearing heavily insulated boots and thick socks would worsen the situation. Insulation works both ways, and in this case, it would prevent the 70℉ air from warming up my feet.

I want you to understand this. Your feet very well may be cold even in the best winter boots you can find. However, these boots will nonetheless prevent the even colder air from making your feet colder than they are, which is good.

Socks

Okay, now onto the gear. Let’s start with socks. As far as I’m concerned, wool socks are the only socks worth having for many reasons that are already all over the internet. Usually, socks are categorized by weight (light, medium, heavy). When it comes to buying socks for the winter, I go for the heaviest socks available.

• These are the heavy winter socks that I wear – full cushioning, heavyweight, and very long (knee-ish length).

There are wool socks that have electric heating. However, DO NOT get these unless you get a very expensive pair of heated socks. Otherwise, they are more likely to be prone to overheating and electrical failures. If you can’t feel temperature on your feet/calf, then you could get burns without knowing.

Electric Heating

When it comes to electric heating, specifically for the legs, here are my guidelines and what to consider if you are adamant about getting electrically heated winter gear:

(If you have similar temperature-feeling issues in your upper body, take the same precautions for a heated jacket)

• If you can’t feel temperature in your legs, be very careful. Test it out multiple times and if possible have someone else try it out, or try it on your hands, or use a thermostat to measure the temperatures.
• Use the inside of your wrist to check the temperature, this is a more sensitive skin area and will give you a good idea of how hot is too hot.
• When it comes to electric heating, the main principle is using a high-resistance wire and a lot of current. Although this likely won’t be enough to kill you, current (not voltage) is what does damage.
• Get the best of the best. Socks, boots, and insoles are the primary electric foot heating options. Get the most reputable brand at the highest premium.
  
• I must say that if you get thick wool socks and heated boots, that would be a bit safer for two reasons: Socks provide some protection if the boot malfunctions and wool socks burn, not melt. Typical safety standards require material that will burn OFF you rather than MELT onto you.

Alternative Foot Heating

I already said no to all electrical heating. If you also want to avoid electric heating, what should we do? Our feet need some warmth, especially if we’re out shredding the snowy slopes all day.

I use a foot warmer, just like a hand warmer, but made for feet.

Boots

Boots will be very important. Here is what to consider

• Insulation, usually in grams. Always go for the most. Typically, a bulk of this will be on the bottom because, for people walking, this is where they make contact with the cold ground.
• Temperature rating. Some boots will say they’re good for -60℉, but note that this is tested with “moderate activity” and someone walking with normal circulation, which means that their feet generate much more heat than someone paralyzed.
• Water proof. Always get water proof, I hope this is obvious.
• Height. The higher the boot, the better. Although, typically, the higher the boot, the lower the temperature rating (with the same parameters mentioned above). Sometimes, jackets will have a lower temperature rating if they have a hood compared to an identical non-hooded model. There is a slight issue, because having more insulation on our calves doesn’t warm up our feet. ALSO NOTE, if the boot has greater height it should have greater insulation weight.
• Tightness. If you’re using foot warmers, these generate heat by a chemical reaction when exposed to oxygen. If your boots are too tight, the foot warmer will not work at all. Make sure the boot is a bit wiggly (1-2 sizes larger if you’re also getting thick socks)

Bottom Layers

Here is how I layer for my legs when I’m skiing

• Underwear – could be standard, or get wool.
• Winter leggings – I go for tight, but there are looser ones. Again, wool is good.
• Sweat pants – go for thickness.
• Snow pants (with a waterproof shell) – go for the most insulation and waterproof.

There are a lot of options, so I’ll give you my ideal layering system:

• Underwear – SmartWool boxer briefs
• Winter leggings – SmartWool (again)
• Sweat pants – Mountain Hardware Down Insulated Pants (not really sweat pants)
• Real sweatpants (if you don’t like the above) – Fleece sweatpants
• Snow pants – Helly Hansen Insulated bib (bib is important)

These are the best of the best (opinion). If you’re skiing a lot, I would think it wise to heavily invest, but if you’re only in deep winter conditions a few times and not for a long time, do your version.

Top Layers

Top layers will be much the same as bottom layers.

You’ll want a baselayer, a mid-layer, and a top layer (waterproof).

I’m not going to go through this in depth, you can use the suggestions I gave for bottom layers to find similar top layers.

If you want to get a heated jacket, go back and read the Electric Heating section.

Gloves

When it comes to gloves, you can get heated or just heavily insulated.

If you plan to use these gloves while pushing your wheelchair, here are some considerations:

• They won’t last long. No matter what you get (expensive or cheap), the gloves will get holes in them within a very short time.
• You want goatskin. Some people say kangaroo leather is the strongest, but goatskin is more common and amongst the strongest leather. This will make the gloves last longer (still not that long though)
• Waterproof, of course.
• Keep in mind you need the dexterity to grab the wheel and push, which means full-fingered gloves and probably not heated since this can add bulk.
• There are different cuff types, this is mostly preference, but I prefer longer so that my jacket can be over the glove and it won’t come out if I stretch out my arm.

In my experience, getting expensive gloves is NOT worth it. I bought a pair of $150 gloves and they lasted one winter season before I had to add multitudes of duct tape. I now have $25 gloves from Amazon (still goat), and they’re doing just as well.

Here’s how I search for gloves on REI

Hats

I don’t have much to say here. Just get a hat you like. You should be wearing a helmet, so go for one that’ll be comfortable under a helmet. And, you guessed it, go for wool.

Being self-conscious, in other words, a lack of confidence can happen to anyone at any time. Those who are in a wheelchair may have this feeling more often or in ways that prevent them from going out. Now, I wouldn’t expect anyone to fully admit to this, instead, you might justify yourself by saying “the weather is bad,” or “I have other stuff to take care of.”

I will try my best to help you make the mental leap over this barrier, I don’t remember the last time I felt self-conscious and I’m hoping I don’t sound like that person when asked how they got successful said “I just did it, it was easy.”

The first step is to realize where this unease is coming from. Self-consciousness by definition is you being uncomfortable with yourself in a public setting, usually something about how others will perceive you. Understand that this is how you see yourself and how you think that people will see you AND their reaction/judgment. When we are self-conscious, this is also a cultural thing – different people will be embarrassed about things that THEY value.

What I was trying to convey to you is that this is a highly subjective thing. We live in our own world and when we die, the world dies. Your assumptions about what people will think of you is really just you projecting your opinions and values onto other people (not very theory-of-mind of you).

It is true that people may look at you and make a snap judgment as is human nature, but if you imagine yourself as someone who maybe hasn’t ever seen someone in a wheelchair except in movies, or very rarely in life, try and imagine what their first instinct would be.

It’s hard to imagine this. They might think “there’s someone in a wheelchair,” and depending on the setting “good for them, if they can do it, so can I,” and “I wonder what happened to them.”

I’ve just started going to a new gym, and today was my third day. Within these 3 days, 3 people came up to me to tell me something like “hey man, just wanted to let you know you’re crushing it and very inspiring, keep it up!”

How often do you give people compliments? Not on their looks or anything material, but perhaps someone overweight at the gym and telling them to keep at it, or a skinny kid who’s just getting into it. Maybe you think it but don’t have the courage to actually go to someone and tell them they’re inspiring. My rule of thumb, which has no basis and probably can’t be tested, is that for every 1 person who gives me a compliment, there are 3 more who only think it.

This might be one of the harder things for someone to do, which is to realize that it doesn’t matter what people are thinking of you (if they’re even thinking of you). Most of the time, people are wrapped up in their own self-conscious conversations, or if they aren’t specifically focused on that, it is very likely something else to do with themselves.

Ultimately, my goal here is to encourage any reader to understand that it is critical to stop letting self-consciousness hold you back from doing something, especially something like the gym which has so many benefits. The very deep-rooted solution to this is self-acceptance. This will be next week’s topic.

Here are some one-liners:

• You think about yourself more than anyone else
• Don’t project your views onto others (how you view yourself)
• How you view yourself comes from your values and perception of the world
• We don’t get to live again, don’t let the ASSUMPTIONS of other’s opinions keep you from experiencing life
• You must start from a place of self-acceptance, then no outside judgments will affect you
• It always helps to be with someone
• People may have an instinctual snap judgment of you, but after that, they are likely back to thinking of themselves
• Take care of yourself for a confidence boost
• “Comparison is the thief of joy” – Theodore Roosevelt

Some quote by some person goes something like this: Do the best you can with what you have. But we never really do, there are a lot of distractions keeping us from being focused, let alone the fact that most of us haven’t defined what our “best” is.

When preparing for something, or when some achievement is desired, there has to be progress made in that direction. Equally important is the lack of progress made in other directions.

My highest goal is to recover from a spinal cord injury. Everything I do must help me get there. If alcohol doesn’t get me closer, then I don’t drink. I reflect on all my actions in this manner and cut out anything that doesn’t help within 3-4 degrees of separation. An example is that my work doesn’t directly help me get closer to stem cell surgery, but the money I make does. That’s 2 degrees of separation (1 degree is a direct relation to my goal, such as physical therapy).

In about 10 months from this day of writing, I’ll be going to Germany to get stem cell. I’m fully away of the uncertainty behind this procedure. Here’s how I see it, one sec let me draw this diagram.

And even with this, let’s say I have a 50% recovery, the distribution of recovery is uncertain.

The outcome of this procedure (or anything) is divided into two camps: in my control, out of my control. Perhaps each one contributes to the probability of success equally. In that case, if I do the absolute most I can in preparation, the probability of success is 50% minimum.

Here’s what I’m doing to ensure that I’m doing as much as I can, and after that, it’s up to God (or luck, or the indifferent universe).

1. Stretch legs every day
2. Eat healthy (this includes no alcohol, no smoking, etc.)
3. Stay active and well rested (working out and getting 8hrs of sleep)
4. Go to physical therapy (this is at NeuAbility every week)
5. Be mindful/meditate
6. Do PEMF every day
7. Stand with leg braces every day (or as much as possible)

If there’s anything else I think of, then I try to implement it because like I said before, this is my one great goal and everything I do must help me get there (or at least do my half and leave the rest to the indifferent universe).