The List Every Paraplegic Must Have

Reading time: 3.5 minutes

Let’s make this quick. I should be studying right now but I became so enticed with the idea of sharing this that I couldn’t resist. 
I also used a very grainy picture and I’m not ashamed.

The list is simple. You have 2 sections. One for what you will do in a wheelchair and one for what you will do when you are out of a wheelchair. 

PS, if you’re not in a wheelchair, this applies to any dichotomy in your life. Maybe you have a broke leg or something that has a before (right now) and after (in the future). It can also apply to being in quarantine.

Why do you need to make this list?

There are many psychological reasons to do this type of thinking. We’ll talk about the benefits of this list along with some explanation of what this list really is.

This list is ever-growing. I call it the Dual Dreams. But don’t let the word “dream” confuse you, these are actual goals that we will actually achieve. Convince yourself of that right now. Before you even know what this list really is, it’s important that you let the benefits of psychology take over and truly believe that this list is not some cozening list full of pretentious, drivel hopes that we retreat to in tough times so that we can take our minds to a mythy world. This is about real life, not mystical fiction.

You can also call it the “twain aims” list if you’re feeling fancy and the rhythm is within you.

Here are the two main benefits that I get from having this list, and there are probably a lot more.

I would even recommend printing this list and posting it up on your wall next to your bed or somewhere in sight. 

The first benefit is that it will give you hope. When things seem down, maybe you’ll never walk again, take a good look at this list, visualize yourself doing these things and remind yourself that it is your goal and your mission to walk once more. Don’t allow this list to dispirit you, instead, have it imbue you with excitement for the future and remind you that you CAN and WILL do these things. Even if everyone is against you, you will prove them wrong! 

The second benefit is that it makes you seriously consider and challenge what you can do NOW. Never get caught up in the pernicious feeling that life is over and you can’t do anything anymore. Maybe you won’t be able to achieve the “Things I’ll Do When I Walk” list right away, but that’s why we have the other section. You are forcing yourself to challenge what you can do while in a wheelchair.

This list excites me beyond exposition. It reminds us that we can still achieve a lot while we’re in a wheelchair and that life is pliable, we shape it with our actions and mind. If you perceive your life as over, everything will soon reflect your philosophy. 

How do you actually construct this list? What does it look like?

I recommend making the list of things you’ll do when you walk, or gain some degree of ideal mobility back, first. Make this list ample. Be creative and think big. What else will you do? Think small?

After you make this list reflecting your wildest dreams, explicate and challenge each item, give serious thought to whether or not this is something that can only be done after you’ve recovered. 

Sometimes, I’ll think of something new that I really want to do and write it down in the “recovered” section but then realize that I can totally do it this week if there weren’t issues with money or some learning curve. So, I take the ambition and move it to the other side.

[Aside] This list actually started off as just a list for what I’ll do after I walk until I realized how powerful it will be if I add the “while injured” section. 

This is a real list, some of the things on this list will be humdrum, but they are nonetheless important to us. You may not think that playing volleyball is all that grandiose, but for me, it’s something I really enjoy.
I’ve never shared or told anyone about this list and now I’m going to reveal it to the world.
Remember that this is MY list, based on what I like and how I want to live my life, we will have big and small things, so long as they are important to us, and we intend to complete them as if it’s life’s dictum. 

Here’s what MY list looks like. There are some things that we could belabor on whether or not they should be on the “Walk” side of the list, but we won’t.

Remember that the things on the list are for you! (I’m saying it a lot because it’s important)

For me, I know I could ski while still in a wheelchair, and I might.
But when I say ski, I envision the type that isn’t in a wheelchair/adaptive skis, and that’s the type of skiing that I want to do. 
I also want to live in an RV and drive around. That one was in the “recover” section until I realized that what I envisioned could easily be done in a wheelchair and it wouldn’t impact the reason I’m doing it (explore, travel, learn and have fun).
I could technically travel to Greece in a wheelchair, but I wouldn’t be able to do the things I want to do (lots of stairs in Greece).
I think you get the point.

The Twain Aims List, AKA Dual Dreams

By the way, this list is in an iPhone-only app called “Bear”


Immediate action item: Make this list right now!

Summary: Create a list with two sections: Recovered and Injured, then write what you’ll do for each part of your life. This is a must have list for anyone in a wheelchair. If you’re not, then I still recommend making the list based on whatever dichotomy is present in your life. It’s helped me a lot!

Overdeliver: Even though I’ve kept this list private, until now, I have gotten involved in the communities for most of these topics and then I inform people of my ambitions (naturally, in conversation) and they are always wanting to help. Take flying for example. I went to EAA Oshkosh and now I know many pilots or retired pilots who want to help me and see me succeed. I’m very grateful for all of them and the only thing really holding me back is the money and the ability to prioritize the apposite time commitment to flying. Remember that everything you’re doing and not doing (within your physical limitations, but even that’s debatable) is a representation of how you prioritize.

PS: PS can be Post-Scriptum or Pre-Scriptum, language is malleable

Questions Paraplegics Need to Ask After Getting Injured

Reading time: 4 minutes

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.

It is not the answer that enlightens, but the question.

Eugene Ionesco, French-Romanian Playwright

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:

Field Notes Resolution Special Edition Memo Books, 2 Checklist Journals and 1 56-Week Date Book, (3-1/2″ × 5-1/2″) Winter 2017 Rhodia 118669 Webnotebook, 5-1/2 x 8-1/4, Black Cover, Blank Moleskine Classic Notebook, Soft Cover, XL (7.5″ x 9.5″) Ruled/Lined, Myrtle Green, 192 Pages

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?”

Don’t Hesitate: A Message to All Paraplegics

This applies to everyone, actually

Reading time: 6 minutes

At the beginning of my journey, I was in the hospital (of course), and I was extremely uncomfortable with everything. The thought of a catheter makes anyone squirm, even at this point, over a year after using catheters every day, I try not to think about it.

I’m not as manly as you might think. For the 6 days, I was in the hospital after my surgery, I hated when I had to “cath.” I would take a pillow and put it over my face and tell the nurse to just tell me when it was over. Even though I couldn’t really feel it, I was afraid that I might.

Just a few days before, I was walking and NOT using a catheter, I didn’t even know what a catheter was.

I took it to an extreme. By the third or fourth day, I was down from four IV’s to just one. I didn’t need much of any medication. However, I was so terrified of being able to feel the catheter that I still took pain killers. I demanded it. I didn’t need them at all, though.

That’s how scared I was about feeling the catheter.

Right now, I’d go back in time and slap myself.

Don’t make the same mistake. For using a catheter or anything, really.

When I went to rehab a few days later, I knew something had to change. I realized that I can’t be scared about cathing if I expect to recover and gain my independence back.

The very first day, the nurse who came in, his name was Caesar (his name is Caesar), I told him that I need to cath (it was a long ride from the hospital to rehab) and that he needs to teach me how to do it.

Two mistakes I made in the hospital:

  • I didn’t take responsibility for myself and I avoided doing what was necessary
  • I didn’t learn how to be responsible for myself

Some of you might not physically be able to cath, that’s totally fine.

The point here is that you have to do everything you’re capable of doing.

In the hospital, I could have asked the nurses and doctors about how catheters work, best practices, and how to do it.

Visualize what life will be like once you’ve recovered. For me, it involves living a life of freedom – traveling and exploring. I might buy an RV and live a life of touring the country. If that happens, and I hope it does, I will probably have to poop in the woods at some point.

When I was scared of cathing, did I expect someone else to do it for me my whole life, when I absolutely can do it for myself? Honestly, I can’t understand why I was even okay with someone else doing that for me.

It gets a little worse.

A catheter is only for #1. What about #2?

This next part is 18+

Don’t continue reading unless you’re prepared to feel uncomfortable.

If you’re not 18, but in a wheelchair, then you’ll probably be familiar with this, so for anyone in a wheelchair, this is another day in the park. (Not that it’s nearly as pleasant).

For me, and it may differ drastically for everyone, this is called the bowel program. I came up with many names, such as “poopy program” or anything that didn’t sound so medically uptight. After all, I already had a finger up my ass.

It took me much, much longer to accept that I had to “manipulate my bowels.” I don’t remember when I first did it myself, but if you’re patient and a fast reader, I probably mentioned it in one of my Instagram posts.

This is one of those things that I look back and shake my head a little. I don’t remember if I ever pooped in the hospital, but before I tell you about my first time doing this myself, here’s how it worked in rehab when I didn’t do it for myself.

At a set time every night (rehab was very regimented), I would grab my fancy hospital bed remote and press the button I was all too familiar with. The SOS. The help button. 

The nurse assigned my room would come in. We always bantered and had good conversations. They would grab the incontinence pad unless I already had one under me. It’s pretty much a square diaper. I would take off my diaper. By now, the door was shut and my Mom had left the room, thank God. 

The first step for the nurse was to put on some medical gloves, then some medical lubricate on their finger and while I lay on my left side, go in and clear out the colon. Then, with the “ready to go” stuff out, we wrapped it up in the incontinence pad and like planned magic, there was another pad underneath. Part two is that a laxative was put in and the nurse left, waiting for me to call 15 minutes later to take the second incontinence pad, wrap it up and we’re done.

The song I played.

Nurses were both men and women. One time, I played this song as one nurse came in. Luckily, she thought it was funny. Even when a nurse is coming in to put their finger in your butt and pull out poop, you can still be lighthearted. 

This went on for a lot longer than it should’ve. If you’re reading this while you’re in rehab or even still in the hospital, then I’m happy. 

I want this message to get to as many people as it can early on. 

This was something that I just couldn’t accept doing for a long time. It was outside of my comfort zone. This was astronomically out of my comfort zone. I didn’t expect it to be done for me forever and again, I was completely able to do it for myself. Because of that, I can’t imagine why I was so much more comfortable with someone else doing this.

The first time I did my own bowel program

I had prepared. The past three or four nights, I wasn’t just lying on my side in silence. I was asking for gruesome details. I knew that I needed to do this on my own. In rehab, they also have standards they hold you to. They expect you to progress and have thresholds for how long you can be in one spot. I had reached the limit for how long I could avoid doing this. 

It was the nurse that I carelessly whispered who came into my room and told me to get up and do it myself. Instead of doing my bowel program on the bed, which would’ve been a lot harder, she had me get into my wheelchair, go into the bathroom and transfer onto the toilet commode (a cushioned chair with a hole in the middle). At this point, she was giving me the tough love that I am more than thankful for. I live for tough love. She wouldn’t believe me that this was actually my first time and that I still didn’t know what I was doing. 

I double gloved. I wanted to put as much distance between me and this process. Two gloves was the best I could do. After that, I put on the lubricant and manipulated my bowels. 

A quick note: while I was doing this, the nurse told me that sometimes this will cause people to pee and that sometimes people peed on her! It takes a brave person. She was still helping me and making sure to coach me through this unthinkable process, so, she was sitting right in front of me. You can use your arm to point “it” down while you do this (doesn’t apply to women). 

Ever since that day, I’ve been doing the bowel program myself. I only wish that I had done it myself a lot earlier than I did. 


Immediately actionable item: Ask yourself, am I avoiding doing something that I shouldn’t be? Set a plan to do it today, or begin the process today.

Summary: Don’t hesitate cathing or your bowel program. Do as much as you can early on. You’ll have to do it on your own at some point. I waited way too long to do some things on my own. It takes a lot of courage, but it’s something you need to do. 

Over-deliver: A lot of people won’t give you the tough love you need. They’ll give you the easy way out and help you if you ask. If things seem too easy, ask for tough love.

Welcome to Team Cosmo

Hey!

This is my first “blog.” I wanted to at least have one or two for you when you got here.

I’m hoping to have at least one blog post per week. They may be short, like a little paragraph weekly challenge or long enough to split into two separate posts. I’m focusing on two things, equally ranked: give value, have fun. I enjoy giving value, so, having fun while doing it should be easy 😉

Also,

I’m extremely excited! Not only am I able to reach and help more people, but I’ll improve my writing skills, and I really enjoy writing.

Even though I don’t have much in terms of blog posts, all the pages on this site have a lot of new info on them, stuff I haven’t talked about on Instagram or YouTube. I think the Cosmo page has the most on it. I had fun writing that one.

As I’m writing this, I just finished recording about 20 minutes of video content for Instagram.

I’m in Australia and I did a campus tour & talk. All about my time hear up to this point. More or less rambled about my time here, and ranted and raved about the nature on the the campus. It’s probably a little cringey but I was just free flowing, having fun recording some videos.

I’m also putting this blog in every category that I’ve made so you ‘ll have an idea of what kind of topics we’ll cover together. More will be added over time.

For now, check out my Instagram and YouTube after you’ve gone through all the pages on this amazing website!

There are a couple forms you could fill out on the FAQ page and the Keynote page

Remember to share this website, you never know who it could help.

Much love to Team Cosmo

Stay healthy!

-Cosmo

PS, I’m writing this post while outside doing a time lapse of the sunset for my Instagram video and I got bit TWICE on my pinky by mosquitoes. That’s the type of devotion I have to Team Cosmo