Posts

Posted on

The Process For Stem Cell Surgery

If you’re unaware, I’ll soon go to Germany to get stem cell surgery. https://gofund.me/50d9f5db
Here and over the next few posts, I’ll be describing my experience.

When I was first injured, I had an absurd amount of hope for my recovery. I truly believed I would have a complete and full recovery in a few months. Then it became years. Then I realized it wasn’t going to happen without something external, so I began to look into stem cell surgery.

What I discovered is that in the USA, there are only clinical trials happening for spinal cord injury (SCI) stem cell surgery. I look across the waters to see where I could get stem cell surgery and found a few options. I don’t remember them all, but I know I reached out to them all, told them who I am and my history, and waited to hear back about their program before deciding.

In the midst of my research, I happened upon this article, which cautions against going abroad for stem cell because a lot of places will be less strict with their practice, telling me it’s not proven, and some other “bad” stuff to convince me not to go get stem cell.

Why try? Well, for me, not trying is not an option. All my optimism and acclaimed positive attitude comes from hope for a recovery.

I decided on Anova institute in Germany

When it comes to a procedure like this (experimental), insurance doesn’t cover it and there is actually a lot of freedom. I pay for either 10 or 20 doses of the stem cell secretome (which is derived from my own lipid cells from liposuction) and from there I can decide what the injection program looks like. The only constraints are that I can’t get injections in intervals of less than 2 weeks and the injection size can’t be greater than 7.5mL and is typically 5mL. It’s up to me whether I want to go to physical therapy if I want to get injections every 6 weeks, 10 weeks, 2 weeks, or whatever.

The regimen I chose is to do physical therapy 5 days/week for 12 weeks while getting stem cell injections every 1-2 weeks (I think for the first few injections they’ll do it 1 week apart and then only fortnightly).

What I’m currently working on is finding out if my insurance will cover the physical therapy as an out-of-network provider. They said that they cover “eligible claims,” with a 20% coinsurance after I reach my out-of-network deductible (whatever that may be). What I need to know is if the physical therapy clinic I’ll be going to is “eligible.”

Planning this wasn’t too hard but not easy either. I have to figure out what’s going on at work, save up a lot of money for a hotel and food for 12 weeks, get x-rays and blood tests, and get the flights roundtrip to and from Germany.

Right now, I’m just waiting until it’s time to schedule all of this because it’s still a bit early on.

(ps, it’s worth noting that this is my experience and what I remember, I may soon find out that I’m wrong about certain things)

Posted on

Wish Upon A Better Feeling

It’s not a novel idea, but it’s not at the front of everyone’s mind: our struggles are largely the same. A lot of us will think that our trials and tribulations set us apart, that the way we feel is unique, who we are is unique, and that’s what we all have in common.

Myself, I’m not very bothered by being in a wheelchair. I don’t like it, but I never cried about it. Recently, talking with some friends, they rehashed the moment they were told about my injury. It was actually a bit emotional for me – hearing my friends recall this the same way anyone remembers many details about the moment they heard <insert important event>. I remember the whole thing, but not in that way. I don’t remember the exact moment I realized my legs don’t move or anything like that. Again, I never cried about it, and maybe in this case it’s worse to have someone close have this happen to them rather than be the one it happens to.

I do cry, I do get very sad, and run through the hills of emotion but if I were to write only about those things, you’d never hear about the wheelchair directly.

What inspired me to write this is a comment I saw on my youtube, and there are many of these, where someone just writes about their situation in a negative connotation. I’ve done this before – expressing my discontent with my situation. I really try not to, because it’s worthless. Other than some relief given from complaining, no one wants to hear anyone complain and it’s a very bad habit to get into.

Instead of talking about past days and resenting the present moment, I’d rather talk about my plans to ensure my current situation is temporary all the while being present and accepting the moment. This is the power of now, mindfulness, stoicism, or spiritualism type of stuff.

If you don’t have a plan to change what you don’t like, then please don’t complain. I don’t want to see comments, I don’t want to hear it. Because if it isn’t going to change, then you’ll be making the same complaints on repeat looking for someone to join you in your discontent. Get a therapist to listen to that (they get paid to listen), but even then what (I hope) they’ll tell you is that you need to have a plan to fix this “problem,” otherwise stop seeing it as a problem.

Posted on

This Blog Going Forward

I’ve never been the blogging type but I am the writing type – when I have something to write about. I treat this blog lightly, only writing when I feel I have something to say. Not only something to say but something that can be helpful and educational to the wheelchair community. It turns out that is a short order. It feels cool to say I have a website, and the views aren’t bad, but if you (one of the few viewers) might’ve noticed, there hasn’t been anything new to view for a while.

I’ve run out of things to say. And you’ll never catch me saying “rolled out of…”

From here on out I will treat this as a way to think publicly. Be legally informed though, everything here is my thoughts, which may be scientifically unfounded or if they are I might not be able to reference the right research.

Expect to read some philosophy and wheelchair related topics. I have a lot of stories from traveling a lot, admittedly my memory is as fickle as the next, so it will be more memoir than history.

Feibccbchgtiuclhneleltbvucblhudetucjevblindbe

or now, ciao

Posted on

A Skill to Traverse Any Terrain

In short, I want to tell you a great way I found to get around a crazy obstacle. It requires the help of 1-2 people, personal strength, and perhaps some gloves.

I was hiking on a trail with my mother and my girlfriend when we came upon a very rocky part of the trail that would be impassable without doing what we did. It’s called the wheelbarrow, a classic thing kids do at summer camp when racing other kids doing it. It’s when someone holds up your ankles and you walk on your hands.

That’s what we did, my mum and girlfriend each grabbed an ankle and I walked on my hands right past the rocky part. It was actually pretty easy for all of us. I recommend getting some type of gloves to prevent injuries from rocks or anything harmful on the ground.

The image below is the rocky part of the trail where I walked on my hands.

Posted on

Whats the Point of Paraplegics Wearing a Belt

My insight from experience

Note: This is a belt for pants, not for a car.


Whenever I put on a belt, I wonder if anyone notices and then ask themselves why I would do such a thing seeing as I’m on a wheelchair. I ask the same thing of myself, and then don’t put on a belt only to learn what I already knew.


Whenever I wear pants, they’re usually too big. Mainly because my waist is pretty small and always has been. Before I used a wheelchair, I had massive (muscular) legs, and finding pants that fit my waist and legs was very hard, so I bought pants big and then wore a belt. Now that I use a wheelchair, the pants are still too big for my waist and whenever I do a transfer, there’s a risk of them sliding too far down.


Reason #1: Pants could slide down during a transfer


While in a wheelchair, I constantly adjust how I sit, in part because the wheelchair I have doesn’t quite fit right, to avoid pressure sores, and for comfort. When I do this, I typically lift myself from sitting on the chair, push my hips back against the backrest and then slide back down onto the seat (basically sitting further back in the chair so I can sit upright). Doing this makes the pants slide UP, making for a very uncomfortable situation.


Reason #2: Pants slide UP


The second reason is funny that I use a belt to keep pants down whereas the original intent is to keep them up

Posted on

Thoughts on being in/on a wheelchair

There’s good in the bad and bad in the good. 

Although there are some benefits to being in a wheelchair, not everyone can take advantage of them because it requires more than JUST being in a wheelchair. 

Here are some benefits I’ve experienced:

  • Getting onto airplanes first
  • People respect me for how I live and think while being in a wheelchair
  • Getting access to job opportunities 
  • Getting better parking spots 

These are all nice, but I argue that everything is harder for wheelchair users, or at least more time-consuming. This isn’t complaining, but to me, facts. Sure I get better parking, but I’m also limited to specific parking spots, and any other spot won’t do. I once tried to park in a normal spot and then someone parked close next to me. I could hardly get into my car. At a grocery store, I was in a handicapped parking spot and someone parked illegally right next to me on the stripes, so close that someone else had to drive my car out for me. 

Getting into the car, putting on pants, and going to the gym. All of it, although not hard for me, takes a lot longer than someone not injured and can be very difficult at times. 

The point of this all is first to recognize that there is good in the bad – being injured, but getting a good parking spot.

Although everything is harder, if it can be stoically endured, then the benefits arise and multiply – once I go to the gym, I make friends and feel a lot better about myself. 

The bad in the good, then, is that although there’s a good parking spot, it is also a limited selection of parking spots and others won’t do. Something worth recognizing.

My takeaway is that it’s all possible, though challenging. When I was doing dips at the gym, I was talking with some people nearby and they said the classic “if there’s a will, there’s a way.” This is true and the inspiration for this short piece. I enjoy working out enough to make it work, even if parking is hard and I don’t necessarily enjoy changing into sweat pants – everything is more difficult, but also a test of determination, which others will see and respect. 

Posted on

Paraplegics Getting Compensation From Airlines

Recently, I used an airline to go on a short trip somewhere. What happened was that once the airplane landed, I patiently waited for every single other passenger to get off, and then waited for someone with an aisle chair to come and assist me with getting off. They never came. Luckily I had my girlfriend carry me off on her back and then get me back into the wheelchair.

Of course, this is absolutely not okay. Myself, I’m most upset with the disrespect of my time. Here’s how my thoughts go on this subject: I am grateful that the global system and infrastructure supports accessibility needs/wants, however, with these systems in place there develops a factor of reliability and responsibility to perform. A similar situation is that in Greece, I’m not upset when a restaurant is on the second floor with only stairs to get in, however, in The USA, which has the Americans with Disabilities Act, I am quite upset/disappointed when a restaurant only has stairs and the stairs must be used (this happened in Boulder, CO).

This, by chance, happened to me twice! I flew out to Minneapolis, MN, and getting on the plane was smooth, getting off my girlfriend carried me. Then on my way back home to Colorado, getting on the plane was fine but getting off was the exact same issue, and the aisle chair never did come.

Here’s where the title meets the text. I eventually got off the plane, calm overall, but seeking compensation for my time. All the flight attendants were on MY side, they put into their internal messaging system the mishap and so on. I requested to speak to the manager of the company that is responsible for the aisle chair, etc. He apologized, but that doesn’t mean much to me, because of course anyone would be sorry but show it. I consistently asked for compensation for my time (getting off the plane, and also waiting for 20m to talk to him only for an apology).

What I learned later is that it (somehow) is that the company responsible for the aisle chairs is NOT responsible for giving compensation. It IS the airline itself. I learned this by getting a phone call from the airline manager, he gave me and my girlfriend each a $100 flight voucher. Very nice.

Here’s the takeaway. Not getting off the airplane can happen. The plane cannot board the next flight until you get off. The airline wants you off, so let THEM put the pressure on the company to come and assist you with getting off. Keep track of the time, if it’s longer than 20m (remember this is already after EVERYONE else has gotten off), ask who you can speak to about getting compensation.

Posted on

Creativity Is the Rule, Not the Exception

A quick opinion

When it comes to being in a wheelchair it’s almost entirely up to you as to how much of anything you’ll do. Of course, this could be classified as an ableist statement, and if that’s what you think then I’m inclined to put you on my list of people that I entirely don’t respect – if you were to even care. The point here is that aside from being able to move your arms or not, and stuff like that, you truly can do a whole lot of things. There are so many programs for all levels of disabilities to do everything from rock climbing and ziplining all the way to basketball and basic fitness.

Here’s the thing: whatever you do, aside from nothing, absolutely requires innovation and creativity. There isn’t anything I can think of that isn’t made different by being in a wheelchair. However, a lot IS possible, given one critical skill. Creativity. This skill reaches broadly not only to being creative with respect to yourself but guiding help from others (which can require confidence).

For anyone in a wheelchair, creativity is not the exception, it’s the rule. Literally everyone in a wheelchair MUST be creative.

That’s my opinion. Creativity is the standard for wheelchair users. I really don’t think there’s anyone in a wheelchair who isn’t creative on some level, and the levels are determined by experience. Traveling requires an insane amount of creativity.

I just had this stuck in my head for a few days after hearing myself and others being acclaimed for creativity, whereas I don’t think I’m very special in terms of creativity (it’s the rule, not the exception). My creativity comes from the things I do AND being in a wheelchair.  

Posted on

Finding Apartments For Paraplegics

cosmo and lauren in an apartment with some books behind them

What I’ve done

When it comes to finding an apartment for yourself (if in a wheelchair) or anyone else in a wheelchair, there’s a lot to consider and it’s not easy.

Let’s set the context: I was in Michigan and looking for apartments in the Denver, CO area. This is already a good bit easier since the city and the surrounding area (Boulder, Broomfield, etc.) has a large population and thus a good economy for options. The second thing is that I was doing this remotely and I would NOT be doing any apartment tours. Why? Because I was in Michigan and it wasn’t worth it for me to go to Colorado and spend multiple days doing tours of apartments, also I was in university and once I was done, I went to Europe.

THE very first thing you need to do is assess what’s the bare minimum you NEED in terms of accessibility. For me, since I’m fortunate to be on the lower side of needing accessibility, this is just that I need to be able to get around the apartment (this is a big one for everyone) and be able to have a shower.

Here’s what we’re looking for in terms of accessibility:

  • Sizes (large enough to spin around, etc. with the wheelchair that, for me, that’s a 3ft x 2ft rectangle, and to spin around I’ll need a 3ft diameter circular area minimum)
    • Bathroom
    • Bedroom + Closet
    • Kitchen
    • Entrance
  • Shower type – bath, walk-in, etc.
  • Kitchen layout
    • Sink
    • Fridge
    • Counter space
    • General style
    • Microwave (if one comes with the apartment, and is it high above the stove?)
  • Elevator?
  • The building entrance is accessible?

Now we shall elaborate and discuss how I searched for apartments

To start, I used apartments.com. I found the most filters here and it works well. The first thing I did was go to the general location and look at all the apartments in the area as a whole. The next few filters are for the price, move-in date, and room count (2bd 2ba for me) if this doesn’t matter then skip it. After that I filtered for “wheelchair accessible” and this will show you the apartments worth calling for one important reason: if they care enough to put it in their end of the system, they’ll care enough to treat you well and the rest of the apartment campus is likely to be accessible-friendly. For me, this reduced the number of apartments by about 70-80%. Ouch.

When you filter by “wheelchair accessible,” what you see are the apartment complexes that OFFER wheelchair accessible rooms, not that they have them available.

Here’s the important stuff:

  • I look at every apartment left after my filters (I also added an in-unit washer/dryer, a stricter location (<10miles from work), and the desired move-in date. )
  • I look at every apartment and look through the pictures, here’s what I look for:
    • Stairs in the apartment (some have lofts and I don’t want that)
    • What the apartment campus looks like (stairs?)
    • What type of showers are there? walk-in or tub?
    • Is the kitchen open or closed (closed looks like a hallway with stove and sinks along the sides)
  • I save the apartments that look nice and spacious because remember that even if they have wheelchair accessible rooms, they might not be available. (in my case, I couldn’t find any that fit my basic (price, date, bedrooms) filters and were wheelchair accessible).
  • I call/email each apartment and here’s what I ask:
    1. Do you have any wheelchair accessible rooms (just in general)?
      • If yes: are any of them 2 bed?
      • Will any of them be available around X date?
      • What are the changes made to make it accessible?
      • Do you have an elevator? (maybe I want to visit the other floors and see friends)
    2. If no, then they lied on their page because we filtered for wheelchair accessible rooms

One place I called had an accessible apartment but there were stairs leading into it. Shame.

As an aside, you can see most of this from the website (apartments.com or the apartment’s). But I always ask about rooms available, wheelchair access, etc. because the websites aren’t always updated each day. You should be able to see which apartments are available and the layout.

What I did was look at the floor plans of every apartment that was 2bd 2ba, available at my move-in date, within my price range, near my work office, had wheelchair accessible rooms, and had an in-unit washer/dryer. This sounds like a lot of filters, but honestly, there were a lot of options and adding these reduced the amount of apartments to about 20, which is plenty to call.

  • If the apartment has wheelchair accessible rooms but none are available, the next thing is to ask what IS available (within the given filters of 2bd 2ba, etc.) (we can usually see this online).
  • Once I know that they have 2bd 2ba rooms, though not wheelchair accessible, I then ask for floor plans with measurements.
  • If they don’t have measurements, take a look at the floor plan and then ask for measurements
    • Here’s what I look for in a floorplan:
    • Can I turn around in the bathroom(s)? For the wheelchair I use, this requires about 3-4ft between the closest walls (minimum).
    • Can I turn around in the kitchen? Some of the thin hallway-style kitchens would be a 1 way in, 1 way out.
    • Are the doors wide enough? 32 inches is the standard ADA width, ask them to measure this for every door unless they know
    • What type of showers are there? A tub or walk-in and does the walk-in have glass doors, or is it a curtain?
    • Where is the toilet location? This is a big one, the best thing is to have a toilet you can approach from the side and with sufficient room around it.

Basically, what I’m doing in my head and what you could do on paper, is having a scale layout of the apartment, and then place the “square,” that is the wheelchair, everywhere possible and see if it gets stuck or can’t turn around.

I know this is a lot, and I repeated myself to make sure the important points were driven home. It starts with knowing what you need and then being smart about finding it and ensuring all the details are covered. If you can visit, that’s good, but still calling and asking these questions will help find the places worth visiting.

Posted on

A Story on Growing Confidence and Pooping With the Door Open

How courage and confidence have become my priority for putting myself first.

The university I attended had a lot of inaccessibility. So much so that there was a group that started just to address it, I’m talking about basic ADA compliance. There’s a bathroom with only a single stall that when I go in, the wheelchair doesn’t even get all the way in and so the stall door won’t shut.

Once I had to go to the bathroom (a different one than mentioned above), and the larger stall was occupied. As an aside, I try not to get upset at people who use these stalls and don’t need to, because honestly, who would want to do business in the small tight stalls? Anyway, I really had to pee and ended up peeing my pants because of the stall being occupied. I even took the elevator to another floor and found the larger stall in use there as well. I took the next week to do my schooling from home to avoid this happening again.

When I came back to the university campus, my friend introduced me to a new way of thinking. It’s called “dude, who cares, do what you need to do.” In action, this translates to: when I have to pee, as long as I’m in the bathroom, I’m going to pee. I don’t need to go into a stall, I can just go next to a urinal, and if not that, then just face a wall or a corner. If I need to poop, I don’t need a big stall, I just need to get close enough to a toilet so I can transfer onto it.

Here’s the story, and not the only instance of this. I was at whole foods eating some food and waiting for a tow truck to pick up my brother’s car and we got hungry. As a human wont, I had to pee. On my way to the bathroom, the very kind security guard came running down the hall after me to give me a lot of help (more than I need, but I truly love people of this kind heart). He held open the door and was seemingly ready to do anything. He actually waited for me to finish so he could open the door for me on my way out and asked many times if I needed help with anything.

Here’s the thing, there were two stalls, one larger and one smaller, both occupied. Without hesitation, I go to the urinals to pee, wash my hands, and go back to finish eating. As soon as I get back to the table, I realize I need to poop. I usually can tell just like anyone else, but it’s hard to predict when I’ll have waited too long, and then I’ve reached the point of no return. This was a moment of no return, I had waited too long. I bolt back to the bathroom, hoping to avoid the security guard’s notice, and knowing that at this point, the best I can do is minimize the trouser attrition.

Naturally, the larger stall is taken, but I entirely do not care. I go into the smaller stall, the door doesn’t shut but I can get in. Facing the toilet, I 180 transferred while taking off my pants and released the Kraken. All the ruckus doubtless grabs the attention of the guy in the larger stall, who certainly feels poorly about himself (and I’m not without a shit tonne of resentment). I’m still on the toilet, (with my pants up at this point) when the guy gets out to wash his hands and I stare deep into his soul when he catches my glance in the mirror.

I finished up, washed my hands, went back to our table, finished my food, the tow truck came, we left to go to the broken down car, and I went home to shower.

The point is, I’m absolutely done letting anything get in my way when I need to do something, especially when the implications are trouser attrition. This requires a lot of confidence and courage, it’s harder to do at work where I’ll see these people day in and day out, but they won’t want to admit it happened any more than I’ll want it to happen. Ultimately, it’s a mindset and value change, it’s not easy to do, but necessary if you respect yourself.

%d bloggers like this: