A Thought on Unpredictable Mortality

It’s hard to argue against people who say society is molded by Hollywood movies or shows. Western society especially.

In any movie or tv show, when someone is given a time until death, it’s a few hours or maybe a few days. Typically no more than a year. A huge part of this is to reflect reality in that the further out we try to predict, the harder it gets.

But what if we did know?

Imagine that you’re 25, totally healthy and no reason to think you’ll die soon. You go to the doctor and they tell you that you’ll die at 50. 100% certainty.

Knowing that you have only 10 days to live can be easier to cope with than having a longer timeframe. You have time to spend money, have great experiences with great people, leave behind positive memories, and hopefully not get upset at anything small.

But how easy would it be to live like that for 25 years? It’s natural for humans to settle back into their default state. Even knowing there’s only 10 days left, a human is guaranteed to get caught in minor frustrations. Someone might have to remind them not to get caught up because how their remaining 10 days’ time spent is precious.

Now imagine having to remind someone about this but tell them that, instead of 10 days, its 25 years. Even 5 years is almost so far ahead in the future that it’s hard to be ever conscious about an impending death.

If I were told I’ll die in 25 years, I would almost ignore it and go about life normally by working and such. Though, I wouldn’t put any money in retirement funds, unless the US government would change my retirement age from 65 to 32.5 to fit my known lifespan.

Almost people expect to live past 50 and even past 80. So, what if you (25 years old) knew you’d die at 80? Does it change anything from knowing you would die at 50? Maybe it would be better not to know until it’s 10 days. But that makes it much harder to cram all the good times in 10 days.

I think the greatest difference between 25 years and 10 days is that within 10 days, you could sleep on friends’ couches and party for 10 nights straight and spend all your money. But 25 years, you gotta have a place to sleep that’s more permanent, and a source of income. There’s no avoiding the mundane routines of life for 25 years. Yes for 10 days, but it gets hard even at a month.

Nothing Owes Me ̶A̶n̶y̶t̶h̶i̶n̶g̶ Everything

What have I done to deserve anything, good or bad?

Almost any belief that anyone has will put the deservedness out of the individual’s control – be it a god or determinism + randomness. But either way, how do we know that we deserve something? Do we actually deserve anything or do things just happen to us as they have and do to so many others?

The title here says two things – nothing owes me anything (i.e. I don’t deserve anything) and nothing owes me everything (i.e. the “nothing” does owe me all things). Confusing in a way, but just don’t think too much about it. I’m trying to start a conversation around two systems.

  • American emphasis on individualism
  • Chinese emphasis on collectivism

These are just two examples so you can get an idea of systems that function in these ways. Here’s an example:

  • I’m a wheelchair user (let’s say the only one, or one of very very few) and I want ramps everywhere and all stairs accompanied by elevators. I want people to stop saying the word “normal” because it offends me.
  • Individualism – yes, we will make it the law so that anywhere you go or never go, you can get around as much as possible. And anyone who says something that offends you should be punished by the public.
  • Collectivism – no, it does not make sense to add ramps and such that are a cost to the country (by taxes) to implement these things, also the extra pollution from adding this extra concrete and electric demand is not worth it. There are many people you will never meet or talk to, they shouldn’t have to change the way they talk for fear of being punished, especially when their words will likely have no malintent.

Both of these are not the right way to go about this. The first one I highlight how movements such as ableism can seem to be a lot of people making demands. The second digs into how sometimes considering the collective can be good, but flawed in that it severely hurts (economically) individuals who are a minority and need extra help. Somewhere in the middle is the sweet spot, somewhere reasonable.

The hardest part is how to figure out what is reasonable. It’s clearly not reasonable to pave all hiking trails in America (especially the mountain ones) just in case I want to go for a hike. But maybe a small few of the more popular trails could be smoothed out a bit so I can at least enjoy 1 mountain hike. If by ‘reasonable’ we consider the individual, then we might consider how to optimize their contribution to the collective in a way that gives a net positive by measures of what concerns the collective. This would be stuff like access to work, education, and the most common pass-times. Basically, if we consider the most common things the collective does throughout their lives, we’d want someone in a wheelchair to be able to do alongside.

If we consider what’s reasonable from the collective point of view, this would be the same. It’s whatever can be done to maximize the collective’s growth (economically, or whatever everyone is mainly striving for). I think that’s a good solution – maximizing how much we can get someone who is not normal (i.e. different than the average person and needs accommodations) to be given the right to accommodations/opportunities so they can contribute as much as the next person all while reaping similar enjoyments from society. This means that because a lot of people have a car, then we should make it so that people who need accommodations also can drive a car. But as for boats, because those are rare, they can be taken care of on a case-by-case basis.

When it comes to deservedness, someone in a wheelchair can say that they deserve, from the collective (the country), the opportunities/infrastructure in such a way that minimizes obstacles to maximize contribution. When it is said that one deserves reasonable accommodations, it doesn’t mean that one deserves to change the language everyone uses. It does mean that I ought to be able to get into my office building.

The critical issue/objection here is whether or not it’s possible to have a net positive contribution. Without thinking too hard, it’s possible to think there’s no way for a net positive given the breadth of accommodations along with their expense financially and ecologically, but then we can remember that something like a ramp can be thought of as a one-time cost, while the use of it can be by multiple. As for ecologically, we’re already well on our way to global destruction, so a little more doesn’t hurt (plus any concrete not used for a ramp doesn’t stay as sand, it’ll just be used for stairs somewhere else).

Two key data points are how many people need the same accommodation(s) and how much they are contributing to the whole. If only a very very small number of people need a ramp and none of them have a job, can it be justified to require ramps across the country?
If there are a lot of people who require ramps and they work significant enough jobs to contribute to the collective in many ways (taxes, community, technological developments, etc.) then does it make sense to install ramps everywhere?

When a conversation around social justice is started, for any group of people (usually minorities), it’s reasonable to say “we deserve to be treated equally in such and such ways.” But there is definitely a point at which it can go too far where that group is making demands outside of their deservedness, forgetting that it’s still very important to consider the collective alongside the individual.

The Inevitable Compromises of Wheelchair Life

Pretty much everyone who has been in a wheelchair for a while, especially when there is very little hope for becoming normal, has similar qualities. What I hypothesize is that these qualities are almost inevitable given the very similar situation of most people in wheelchairs and there are compromises that come with them.

The first criterion is to have been in a wheelchair long enough to have overcome the initial mental barrier to the dramatic change (assuming the person got injured in adult life), or if they’ve been in a wheelchair for a while, then the first criterion is for them to be an adult.

One common quality is “nice.” After having enough experience, anyone in a wheelchair will understand that life is very very difficult without some help. A simple example is when going to the store and needing to get something off the top shelf. If the person in a wheelchair is a total meanie to everyone around and then needs something on the top shelf, it’ll be very humbling/embarrassing to ask for help and probably not get the needed help. This goes for many things, but basically, anyone in a wheelchair HAS to be nice by default because they should know that needing help is inevitable.

This is a compromise. Not that being nice is bad but when someone MUST be nice a majority of the time, it isn’t always good.

Patience is a virtue, but at what cost is it attained? One of the greatest compromises I’ve faced is that nearly everything takes longer. Getting dressed, getting in the car, showering, doing the dishes, etc. After a while, I’ve gotten acclimated to this and can plan accordingly, but it means that the things I can do in a day are reduced, depending on what the day involves. A multi-stop driving tour where I get out each time – the extra in-out time adds up.

Another compromise is living. Whether in a house or apartment, the needs vary but are a lot more than any normal person who could walk up some stairs, squeeze through some tight areas, or even just turn around without taking up more space than a circle maybe 1-2ft diameter. Even for myself with minimum requirements, the apartment I live in is much more expensive than what I could otherwise get. It turns out to be surprisingly hard to find apartments with an elevator, or even as the bare minimum, a kitchen or bathroom that I can get around.

There are many other compromises that are made, some alleviated by having a good friend(s), others alleviated by a community of good people, but a lot are not going away and a lot of them are far from trivial. What’s the result of this? Mainly that many people in wheelchairs have similar experiences, which leads to similar life philosophies – like always being nice, believing that people are good given a chance (unsuspecting folks holding open a door), having patience, and accepting life as it is in the moment. But also some negatives such as dependency or isolation.

I guess I made a clear case – given enough people with a similar and major life situation, they will have similar qualities. But what about it? Nothing. It’s not good or bad. It’s just an observation that doesn’t change anything and you shouldn’t feel bad about these compromises that are made by people in wheelchairs. With true Stoic insight – it is what it is.

The Fine Line Between Helping and Being Used as a Wheelchair User

One time going through TSA, even though I have pre-check and all that to make it much faster, there was someone training there. They asked if they could train on me since there aren’t many people in wheelchairs coming through as a training opportunity. I said yes and it took SO long, upwards of 10 minutes, which is a very long time.

Just because I’m in a wheelchair and present TSA with an opportunity for training, does not mean they can waste my time by doing the same pat-downs over and over again. It began to get annoying and there was nothing in it for me, no reward since the only thing the TSA could reward me with is to go through TSA faster. I understand training, but also it seems like they didn’t understand that I still needed to go get to my flight.

My advice here for anyone in a wheelchair is to respect your time and say no to things like this.

Letting TSA use me for training is okay once, but then I started thinking why don’t they just use themselves and have someone with experience sitting in a wheelchair? That would be very close to and maybe better than using me for training.

Another example of saying no and respecting my time is a year ago when I was in the gym, someone told me they were interested in the wheelchair community and would like to learn more and hear my story. That’s not uncommon, but this was not a person I would invite over or go out for coffee with (one of those people that you don’t dislike, but you can tell there isn’t a good friendship on the horizon). Also, the way they said it was a little odd, they didn’t say that they were in the health industry or had someone close in a wheelchair, just that they’ve always been intrigued by the mindsets of people in wheelchairs (or something like that).

The issue here is that when I’m in the gym, I want to work out and maybe chat a bit with some friends, but not talk for 30-60 minutes about myself in this capacity because someone is curious. Also, I have this whole website, my YouTube, and my Instagram, which documented my rehab experience entirely. So this is also a situation where I say no.

Situations where I say yes are more common. A lot of people reach out to me over Instagram asking questions because they’re doing some sort of school project, usually for physical therapy or engineering. I take time to write out long and helpful messages for these questions. Or on YouTube when people comment asking questions, I’ll respond as much as I can. In the massage therapy community, I can volunteer to give therapists experience with someone in a wheelchair, and I get a free massage in return!

When people in the gym come up to me and ask me about my wheelchair, the conversation always goes to how it happened and such, that’s also fine because it’s a spontaneous conversation and not more than 5-10m, which I can cut off whenever I want to get back to working out. This happens a lot and is preferred rather than someone wanting to schedule time to talk about me and the only time I would see them is in the gym.

Another thing I’ve said yes to recently is to go talk to a school class and help them develop a good perspective for people in wheelchairs.

It comes down to personal discretion. When presented with a choice to give time and energy to something that is focused on you being in a wheelchair, does it feel or seem like you’re really helping in a way that would make you feel good? Or maybe it feels more like one person’s gain irrespective of you except that they need you for the gain?

The Variances of Individual Tolerance

When we consider a 1-10 scale for “something” tolerance, my 10 is not your 10.

This is one of those things that’s mind-numbingly obvious, and any further discussion is beating a dead horse. However, putting this into practice is NOT obvious.

Once, someone told me that they shouldn’t feel bad about a broken leg because look at what all I’ve been through. Even worse is if you tell someone, “Your thing isn’t that bad, just look at Cosmo. Handle it like he handled his injury.” First, nobody likes being told something like this. It can be valuable, but it is almost always not received stoically. Second, what if that person who broke their leg is a runner and just about to go to a big competition? For them, that’s a 10/10 on the scale of “this is a bad thing, and I don’t like it.” For me, my injury was horrible, and of course, I absolutely hate it, BUT I’ve been able to stay positive and not get depressed about it, which makes it maybe a 6-7/10. I also never experienced pain from my injury, unlike if I were to break my leg and have a bone sticking out – that’s 11/10 (I’ll pass out seeing that).

Don’t compare yourself or other people when the situation is so different, and likely the scales are not the same. If another runner before the same competition broke their leg and handled it very well, then that’s a good time to consider how you react.

Why Continue Life in a Wheelchair?

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.

The World is Smaller

A significant number of people have dogs that aren’t allowed on the couch, or even into an entire room. The majority of this dog’s life of is spent in that house, and it can’t even go everywhere.

It’s a similar feeling when using a wheelchair. On a much larger scale (the world), there are plenty of places I can’t feasibly go. Think of all the apartment complexes with only stairs, the parts of the world that just can’t retrofit ramps into their infrastructure, or don’t want to because of the great expense and possible ruin to whatever they add the ramp to (think very old infrastructure). Even the university I went to, Michigan Technological University, had lots of inaccessibility.

For me, while I’m in a wheelchair, the world is much smaller. Luckily, it’s a lot better than it was.

In Greece or Italy, which have a lot of ancient infrastructure that they’re building around instead of replacing, each have surprised me with how accessible they are, although not great. However, I won’t ever be asking Greece to improve and spend more money on the likes of me. The truth is, it’s good enough that I can do a lot, and the rest that I can’t do or the things that I can do but are tedious is perfectly fine. There’s no justification for me to demand that the world be paved flat just so I can get around.

The Third Wave of Fear and Why Ableism is A Flower With Thorns

The Salem witch trials, famous for being so ridiculous that it’s infuriating to read and learn about.

The red scare and McCarthyism. That was more modern age with politics and s nation wide (as opposed to a village in Salem). Horrible and very infuriating.

We now have another one of these. Not quite as identifiable. There isn’t really one person doing it. Instead, it’s among the people. This is the cancel culture and ism movement. Not all of it is bad, at face value it seems righteous. Giving power to the people and a final push for equality and integration towards a greater society.

BUT unfortunately when people get power, they use it and only think of themselves.

In particular, what I want to address is how I feel about ableism. Even that term existing is odd to me. I get it, but from a high level view, and also from my perspective (this whole thing is from my perspective) it seems to me that this is the era where every type of group starts coalescing to form an ‘ism’ and start going around shouting and stomping wherever they can to be heard and make some change.

Not all these changes are bad, but it seems like everyone is walking on egg shells here. If one company does something, all of them have to do it, otherwise they’ll get singled out and dumped on.

With regards to ableism, I think it’s a bad implementation of something that could be good.

It’s worth noting before I go any further that all this I’m about to say is from my perspective as someone who uses a wheelchair, and without a majority of the common struggles. Also, I haven’t done any research on this, it’s just my perspective with how I’ve ‘interacted’ with the ableism movement, which I think could reflect the average person who isn’t seeking out any information (as most people probably don’t do for all the ‘ism’ movements).

When I go to a group of women friends and say “hey guys how’s it going” but it turns out that one is a scream-rage-in-your-face feminist (the ones that give feminists a bad wrap) and in that unbecoming fashion tells me how I MUST stop saying “guys” to refer to a group of people. I’m scared, what happened to sticks, stones, and words not hurting people? I didn’t mean anything bad, I think of myself as a feminist, I support women. But that right there just ended any future conversation. All these movements make people afraid to talk less they get cancelled. Words are important, but the intent is much more important. The meaning of words change. Just think of all the words that used to be innocent and now are profane and banned from TV.

What if “guys” in the way I use it to refer to a group of people were contextually asexual? A murder of crows is not the same as a murder when someone dies. Can’t we change the meaning of words? Or can we have things go both ways? Where we stop cancelling people when everyone knows the words were taken out of context and meant no harm. Can we start with ourselves and not let words control us?

There’s an article I saw that ended the conversation on ableism for me. It was an article where Beyoncé was forced (social pressure, cancel culture, etc. ) to change a word in her song. The word was “spaz.”

I’m can understand that the ableism movement is trying to remove words from mainstream so that they aren’t considered acceptable. Like the word retarded, or saying something is gay. And that makes sense, calling taxes (no one really likes paying taxes) gay, can lead to “gay” having a negative connotation across the board.

But did society really just make Beyoncé change a lyric? Does anyone know how many songs have offensive lyrics? Is this fair to put Beyoncé up on the guillotine for all to see as a warning? Is it just (justice) to single out someone without using the same logic on all songs being listened to and make the lyrics change otherwise take the song down?

People are already cautious to talk to me about being in a wheelchair. Who knows if I’m a veteran with ptsd and even someone asking how I got injured will cause me to have an issue.

Whenever people ask me about stuff pertaining to the wheelchair, they are very polite. I don’t want them to never talk to me because they’re afraid I’ll go ‘ism’ on them and accuse them of some type of harassment or something for using the wrong words. I use the words walk. I almost never say “roll” to refer to my movements. I walk into a room, and I prefer to talk like that. Maybe that’s because I’m clinging onto my life before I used a wheelchair, and likewise hanging on for the future where I walk again. Maybe I just want to talk to people using their language so they get an image in their head that I’m more like them than not. I don’t want people to have to change the whole way they talk just to ask if I want to go for a walk at a park.

From my perspective, the worst thing about it is the feeling I get that everyone has this mindset of “I deserve.” The world owes me nothing. I can push for equality and inclusion, but how much of a burden will I be on the whole? In America the culture is very focused on the individual whereas my focus is on the whole. It’s up to me to earn respect and make things work for me. If I get help, that’s good, but I won’t ever go anywhere demanding something just because I decided to go somewhere and maybe I’m the only ever person in a wheelchair to have ever been there. The view that everyone is equal sounds good, but has long term negative consequences. We are not equal. Maybe you can say we’re equal in what rights we have, and yeah I won’t try to argue that. But no one is created equal, otherwise we’d all be the same. Recognizing that we each have a duty to contribute to the whole in our unique way means that not everything will be equal across the board. For example, would Stephen Hawking be in the ableist movement? Perhaps. But it’s more about giving the right support and opportunities for him to contribute rather than change a word in a song. Does he need equality in all aspects? Or just to be treated as anyone else in the specific contexts that pertain to him the most?

A final disclaimer: I’ve never been discriminated against that I know of, so of course I’m writing this as a soldier see who’s never seen battle, so to speak. I think everything I said is still valid, but of course I would. If you didn’t like my words, you can’t make me change them, but you can ignore them or be stoic and not let them affect you.

Am I Still Myself?

In the gym, usually when I’m doing pull-ups or dips, people come up to me to give praise. Stuff like “you’re inspiring and motivating!”

It’s nice. I take the compliment but it doesn’t make me feel any different. I don’t feel better about myself or anything like that, mainly because I’m grounded in the sense that I’m fully aware of myself and compliments don’t change how I view the reality of myself. If anything, it would take a wild, unconventional compliment to make me think of myself differently in a better way.

Everyday, I live and experience life as myself. To me, I’ve always been me and always will be. As far as I’m concerned, there’s no difference between Cosmo before he got injured and Cosmo after. There are differences in the sense that I developed personally and professionally in nearly all aspects, but I’ve still been me throughout all of it.

Why was I not inspiring and motivating when I was in the gym before my injury? I’m doing the same thing.

A Quick Message for All Paraplegics

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.

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