New Shirt

My friend, Titus, went to great effort to make me a shirt.  I wore it today, and it got a lot of attention from the therapists.  It encapsulates my attitude about this place.

Rehab: Livin' the Dream

Questions

It occurs to me that some of the readers of this blog might have some questions about paraplegia, or my condition specifically.  There are a few that I hear a lot, and probably a lot more that people are too polite to ask.  In this post, I'm going to answer some questions I hear a lot, but I'm wondering if people have any other questions I haven't heard.  I'll answer anything, I don't care.  If you have a question, put it in a comment here, and I'll answer it.  I actually enjoy talking about my condition, so don't hold back.

What sort of injury do you have?

Mine is an incomplete spinal cord injury at the T4 vertebrae which means that the spinal cord was not completely severed, but was kinked up fairly high.  The doctors fused a section of my spine together so that the vertebrae are attached to each other.  I believe they fused from T3 to T8, but I'd have to double-check that.

What does it feel like?

I can't really feel anything below my nipples.  That's my sensation line.  I have complete use of my arms, but no use of my abdominal muscles, and I can't feel half of my ribs.  This also means that I can't breathe as well as I could before.  I have full control of my diaphragm, even though it's below my sensation line, but because of the rib issues, I can't inhale as deeply as I used to.  When I cough, it's extremely weak.

Because of my lack of ab control, it makes it very difficult to sit upright and do anything with both hands.  If I don't have one hand supporting me, I tend to just tip over.

Because my injury is not complete, I still feel some vague sensations from my lower body.  Unfortunately, they are not very useful, and they are on a time delay.  For example, after I've been sitting in one place for a while, I think I can feel what position my legs are in.  Or if I hurt my foot, I will feel a vague sensation of pain after a minute or two.  It's possible I may feel more one day as my injury heals, but the odds are against it.

Why are wheelies important in a wheelchair?

Everyone seems to think that wheelchair wheelies are just for show, but they serve several very important functions which is why they teach them in therapy.

Wheelies are also cool

1.) They help with pressure relief

When you are paralyzed, you don't feel pain like normal people. When a normal person sits in one place too long, they start to feel uncomfortable, so they start to fidget.  This keeps them from getting pressure sores on their skin.  Paraplegics don't get uncomfortable the same way, so you have to remind yourself to fidget on a regular basis to avoid very nasty sores.

There are only a few fidgeting options for paras because their legs don't work.  You can hold your entire weight up off the chair with your arms for two minutes at a time.  This is very effective, but is extremely difficult.  You can lean forward onto some horizontal surface for two minutes.  This takes most of the weight off your buttocks, but it looks pretty silly if anyone else is around.  There are a couple other non-ideal options, but the final, and easiest option is to lean back.  If you can just wheelie yourself up against a wall or in front of a chair, you can move your weight onto your back and off your butt for a couple minutes without looking like you just lost your mind.

2.) They let you traverse obstacles

The front casters on most wheelchairs are pretty small, and they don't roll over bumps very well.  If you can wheelie them up onto things, it makes your life much easier, and your trip much smoother.  In worst-case situations, the small casters can get stuck in holes which can flip you out of the chair.  Much better to just wheelie over them.

For experts, it is also possible to wheelie up curbs and over larger obstacles.  This is an advanced technique however, and usually takes years to learn.

3.) They let you descend hills more safely

If you have to go down a steep hill, the chair will lean forward, and you will likely fall out.  If you are good enough at wheelies though, you can descend the hill in a wheelie.  This has two effects.  First, you are leaning back so you don't tumble forward out of the chair.  Two, because most wheelchair wheels are cambered, when you put the chair into a wheelie, the wheels no longer point the same direction, so you get a subtle braking effect that helps slow your descent.

Are you in any pain?

Yes.  Lots.  The muscles around my surgery are still very sore.  I have a prescription for a small amount of Oxycodone, and I use it in the morning to get ready for therapy, but after therapy is over, I never use it.  I'm trying to avoid any addiction although I doubt there's much to worry about with the level they're giving me.  What they give me is effective when I take it, but when I don't, it feels like I went 5 rounds standing with my back to Mike Tyson.

What are you most worried about when you go home?

I'm worried about lots of things.  I have learned how to do a lot of stuff here, but that stuff is still incredibly difficult.  Everything I do is ten times harder than it used to be, and takes ten times longer, so I worry that I won't have the strength or the endurance to do all the things I need to do to live alone.  The hardest thing I do all day is get out of bed.  Sitting up in bed is an athletic event, and my back is most sore first thing in the morning.  Right now, it's bad enough with the powered hospital bed and nurses to bring me pain meds, but when that's gone, I just don't know.

I'm also worried about falling.  I still don't really have the ability to get up from the floor onto a chair or my wheelchair by myself.  It turns out I weigh a lot, and I just don't have the strength or the technique yet.  So if and when I fall out of my wheelchair (it will definitely happen eventually), what will I do?  I think I'm going to have to get one of those bracelets that calls the paramedics just in case.  It's embarrassing, but I don't see any alternative.

Help!  I've fallen and I can't get up!

The Apartment

Yesterday, Katie from recreational therapy agreed to take me out to visit the apartment I wanted to rent so I could see the bathroom.  I have been pretty confident that the apartment would work in all other respects, but I was not sure about the bathroom.  Specifically whether I would be able to park the wheelchair in front of the huge vanity and still make the transfer onto the commode.

Scheduling of the trip was something of a problem, but after much negotiation and preparation, we set off in the hospital van.  It was Katie from recreational therapy, Katie from occupational therapy, and Emily from physical therapy.  Why did we need that many escorts for just me?  I don't know.  Was there a third Katie running the apartment office?  Yes there was.

One of the Katies en route to the apartment

We were met at the apartment by Mike and Gus who were prepared to help nit-pick and offer suggestions on how to solve any problems we ran into.  We ran into a few issues, but nothing insurmountable, and in fact, the apartment exceeded expectations in almost every regard.  The bathroom proved to be no problem at all.

No problem!

Ultimately, the only serious concern I left with was whether my queen size bed will fit in the master bedroom.  It will fit, but I think it will either have to go against a wall or else I won't be able to roll around it.  Changing sheets will be problematic.  I may have to drop down to a double for this reason which I will do if I have to.

The rest of the apartment is fantastic.  They will be removing the cabinetry beneath the kitchen sink so I can roll right up, and the sink is lowered.  There is a piece of counter I can roll under and use as a work surface.  There are switches at ground level for the stove fan and light.  Almost all of the features I could imagine wanting are present.  Plus I can push myself to several restaurants and a Starbucks.  Overall, I think it's gonna be pretty sweet.

A Buddha Bear Workout

Hi.  Buddha Bear again.  I thought you guys might be interested in seeing how I get my exercise.

I like to start with some bar dips

Then I do some cardio

A good abdominal workout is very important

Sometimes I'll help stretch out other gym members

A long workout really wears me out

Thanks to Ben Parees for helping take these pictures.

Affirmation

This morning, I realized something.  I realized that I love the praise I get from the therapists here.  When they say I'm doing a good job, I believe them, and the sad fact is that it's my primary motivator.

Attaboy

Unfortunately, none of the therapists is coming home with me, so I'm not going to have any of the affirmation I routinely get here or any of the motivation.  I just hope that I can find some other way to motivate myself.

In other news, Raheleh finally let me make brownies today.  I think they are incredible, but I wonder if I'd have enjoyed them as much if Raheleh didn't agree.

Like everything, making food is a struggle

Good enough for Raheleh?

Today, Emily also finally taught me to do wheelies.  She put me on a leash so she could catch me if I tipped over backward.

Still scary

I wasn't sure I'd be able to learn it at all, but Emily is a good teacher, and I did at least one wheelie that I held for probably a minute.  Because she is generally careful not to over-praise, it means more when she says I did a good job.  So the question remains: would I still be proud of those wheelies if I was doing them by myself?  They still ARE pretty cool...

Control

For some reason beyond my ability to comprehend, I find it easy to maintain a positive attitude about the things I can do something about.  I may not be able to fix my legs, but I can learn to work around the problem to the best of my ability.  I find it much harder to stay positive about things I can't control, and I think that for me, losing that control is the worst thing about this injury.

One of the things you do in rehab is train your bodily functions to operate in a certain, predictable way.  You use drugs and routine to suggest that your body do certain things at certain times and not when you don't want it to.  Unfortunately, you can't force your body to respond.  You have to coax it and hope for the best.  So far, my results have been mixed, and it is becoming a source of extreme frustration for me.  Even when you think you've got it working right, you're never entirely sure.

In the case of my paralysis, I can fight by getting stronger and learning to do better transfers or ride the wheelchair better.  The path to improvement is obvious.  In the case of my body, the best I can do is try a new schedule or a new medication and see what happens.  This leaves no obvious end in sight for these problems.  All I can do is hope that one day I'll get it figured out.  I guess if it wasn't for this, I'd be enjoying rehab a bit too much.

Bored

I am bored today.  Bored bored bored bored bored.  So bored I watched a soccer game.  The whole thing.  Actually, I kinda like soccer, but I still don't find myself watching it on TV very often.  Especially not here at rehab.

Bored

I suspect this is what most of the inmates here feel like most weekends, and if so, I feel really bad for them.  It makes me especially glad that I get as many visitors as I do.  It's hard to appreciate your friends fully until you see what life is like without them.

It's not like I don't have anything that I need to do.  I need to apply for social security disability, I need to transfer money from my bank, I need to talk to my wheelchair dealer, I need to try to plan a trip out to my new apartment, and I need to return a fancy medical boot I ordered.  Unfortunately, since it's Sunday, I can't do any of those things.  All I can do is sit here and wait for Monday when I won't have time to do any of those things.  It's a predicament.  Unfortunately, I have no good solution for it.  Guess I'll go down to Starbucks and think about it over a Mocha Frappuccino.