Answers and More Questions

Well, I had my appointment with the HO expert yesterday.  I was impressed that she seemed to know what she was talking about, but I was not enthused about what she told me.  She confirmed that my condition will continue to get worse unless I stop over-stretching my hip muscles.  Unfortunately, normal activities like getting in bed, or sitting my wheelchair overstretch those muscles.  Overstretching leads to micro-tearing, and that leads to more calcium formation and increased stiffness and decreased range of motion.

She said the fix for the problem is surgery.  It's a pretty invasive surgery, and I may have to go back to rehab afterward.  Also, normally they won't perform the surgery until 12-18 months after the onset of the HO to let it mature.  However, she got me a consultation with an orthopedic surgeon to discuss whether they would consider doing the surgery on me early because it's interfering with my ability to live.

The fact that there is an apparent path through this nightmare gives me hope, but the remaining unknowns and my decreasing ability to function on my own scare me to death.  If I wake up one morning and can't sit up or get out of bed, what do I do then?  I hope I'm worried about nothing, but my experience so far seems to indicate that that's where this may be headed.

What to Write

It was another relatively uneventful day in my apartment.  I want to write something on the blog, but I don't know what.  I didn't really do anything today.  A nurse stopped by to draw some blood and tell me to drink more water, and my physical therapist was here for a while, but he's scared to do too much to me until we find out what we're doing about the HO.  Today my big accomplishment was brushing my teeth.  Other than that, I watched some tv on my computer.

I tried to take care of some paperwork, but it's pretty overwhelming.  My friend, Julie, came over for dinner last night and helped me figure out some of my insurance paperwork, so that was productive.

I wish I felt flexible enough to take my chair outside by myself.  I want to go check my mail and take some trash out.  I hope they tell me something useful at this doctor's appoint tomorrow.  I'm tired of not knowing what I'm supposed to do.

So Hard

Sorry I haven't written in so long.  Moving out of the hospital has been 20 times harder than I expected.  I'm soooo glad my sister was here to help me.  She left last night, and today is my first full day alone in the apartment.  I also don't have any therapy today so I really am on my own.

I don't think the move would have been nearly so hard if not for the heterotopic ossification.  I can feel it decreasing my flexibility day by day, and I already can't put shoes or socks on.  My occupational therapist showed me how to put pants on with my reaching claw, so at least I can do that now.

The HO honestly has me scared out of my mind about what the future holds for me.  I can no longer reach my feet because my hips are so tight, so I already can't do a lot of the things I could do when I was in rehab.  I'm very scared what else I'm going to lose.  The therapists at UNC have been working on it for me though, and I'm extremely happy that I've been offered an appointment with an HO expert on Friday.  Now I just have to find transportation to and from UNC for the appointment.  That is non-trivial.

What has been a huge help and comfort since I've been out has been my sister and my friends.  My sister really was instrumental in getting the boxes unpacked here and helping me go through my stuff and getting rid of everything I don't need.  My friends have visited almost every night and brought food and a break from worry.  They have also continued to surprise and delight me by offering much more help than I could ever have imagined.

I want to write more, but I don't have time.  There's so much to do besides blogging.  Paying bills, changing my address, therapy, researching HO, organizing my stuff, etc.  It seems like the pile of todos is unending, but I'll try to blog more often now.

Wish me luck.

Heterotopic Ossification Part 2

So it turns out I do have the HO, and they are starting medicine immediately.  I'm glad about that, but I'm pretty bummed to be going home with another medical problem.  This one is going to restrict my hip flexibility on a permanent basis.  Unfortunately, I need that to do things like put on shoes.  I might be able to improve it temporarily with stretching, but I'm expecting that to be a constant struggle.  Like I need another one of those.

I could go home right now, but the apartment isn't ready, so I decided not to leave tonight.  I'll leave tomorrow morning.  I expect my Saturday will be full with getting my apartment ready to live in, and on Sunday, I expect most of the day to be full of visits from nurses and home health providers.  I suspect people are thinking about visiting me this weekend, but I would suggest you should at least call first.  I don't think I'm going to have a relaxing weekend.

Heterotopic Ossification

When they x-rayed me the other day, the doctors found something they think is a problem.  It's called heterotopic ossification.  What it means is that due to some trauma below my sensation line, they believe they have found a place in my hips where bone is forming inside my muscles.  It occurs in 15% of spinal injury patients, and it looks like I may have gotten lucky.  Today they need to run a "bone scan" to confirm their diagnosis and to see if there are any other locations they need to worry about.

Treatment consists of 12 weeks of drugs which should stop the formation of bone, but may also make me nauseous.  I can't wait.  I'm still hoping they read the x-ray wrong, but HO would explain some of the lack of flexibility in my hips.

Excitement and Disappointment

Tomorrow morning I go home.  I've finally gotten to the point where I'm more excited than afraid, but I'm still pretty apprehensive.  The last two nights in the transitional apartment have been relatively uneventful, but at the same time have been very eye-opening about what it's going to be like doing everything without a nurse on call.

I'm going to miss this...

... because it brings one of these

But overall, I'm excited to go home to my new apartment, and I'm excited to spend some time with my sister, and I'm excited to check out my new neighborhood, and I'm excited to be closer to my friends, and I'm excited to not have to eat cafeteria food every meal.

---

Unfortunately, I wrote that earlier today.  Then they checked my x-ray from yesterday, and they may have found a problem.  So they want to keep me through most of tomorrow to run some more scans.  I'll be lucky if I can get out tomorrow evening.  It sounds like it's more likely I'll be released on Saturday now.

I didn't know how much I was looking forward to my release until they took it away.  They're doing it for my own good, but mentally, I have checked out.  Now it looks like I may have to go take a half-hearted stab at some more therapy tomorrow while I wait for bone scan results.

I don't handle disappointment well, and this is a pretty major disappointment for me.

This kid again

Inspiration

Since I started this blog, a surprising number of people have written me to tell me that I am an inspiration, but it's rare that they say exactly what I have inspired them to do.  I hope I have not inspired anyone to crash a motorcycle.  It can be very exciting, but I don't want to be responsible for the consequences.

In general, I assume this is not what they mean.  I suspect they mean that I am inspirational in a general sense, and that they have not actually been inspired to do anything.  That's ok.  I'll accept that compliment.

It's unfortunate that I had to hurt myself to inspire people, but if I'm going to be an inspiration, I would prefer to actually inspire people to action, and to make some sort of change in their life.  Here are some things I'd love to inspire you to do:

• To smile when life doesn't go your way
• To learn the names of the people that you meet and remember them
• To write about something that interests you
• To treat your friends and family better: you never know when you're going to need them
• To be nice to the people that serve you: It's surprising how many people aren't
• To take time to appreciate what you have
• To help somebody who needs help
• To live your life without fear

What would you like to inspire someone to do?

Buddha Bear Relatives?

My cousin's wife, Angie saw these bears in San Francisco.  I asked Buddha Bear, and he said they're distant relatives.

Relatives with a nice car

Floor Transfers and the Transitional Apartment

I don't want to write much today, but it was a productive day so I want to say something about it.  This morning, it was decided by the daily therapist round table, that I could spend the night in the transitional living apartment if I could demonstrate that I could transfer onto the tall soft bed in there.

Very soft and very tall

So during the day, I had to demonstrate that particular transfer twice, each, to Emily and Raheleh.  Apparently I did well enough because I'm writing from inside the apartment.  It's supposed to simulate my apartment when I get out of here, but I can tell you I will not keep my apartment at 65 degrees in the summer.  It's freezing in here.

Freezing

The other thing I did today that I was proud of was some floor transfers.  I used Emily's "From your knees" technique to transfer directly from the floor onto my wheelchair.  It was ridiculously difficult, but I did it twice.  I hope I don't find myself on the floor too often, but when I do, it's VERY nice to know I have a technique I can use to get back up.

Buddha Bear in the Garage

This is Buddha Bear again.  The other day, I had to bring my car down to the hospital to help out a friend.  Afterwards, I was bored so I killed some time around the parking garage.

Parking my car

Loitering

Hanging out in the elevator

Getting money at the ATM

I pushed the button no the help box and ran away

I fell

Riding a blue bull

Stealing a Pepsi

Joyriding on a golf cart

This is not my bike

Waiting at the bus stop

Waiting at a different bus stop

Who is that?

Oh, that's me

Living on the edge

Thanks to Gus Carey for helping take these pictures.

When I Get Out

Sometimes I forget that my readers don't actually know what's going on with me unless I tell them.  My plans for after I leave here are in constant flux, but certain aspects of them have solidified, and it seems only fair to share those plans with you.

The UNC Hospital Rehab Center is going to put me on the curb at 11:00 AM Friday, June 22nd.  My sister should arrive shortly thereafter to collect me and take me to my new apartment.  Hopefully her car has room for all the stuff I have collected here in my hospital room in 6 weeks.  And Buddha Bear.

He takes up some space

Once we arrive at my apartment, Jessica has told me she is prepared to stay with me for a total of five(5) days(!) which is amazingly good news.  I was extremely happy when she told me that.

My priority once I get to my apartment will be to get it set up so that it works for me, and I can function in it.  I need to get the furniture placed where it does not obstruct my wheelchair, and I need to figure out procedures to do all the things I need to do on a daily basis.  In medical circles, they call these ADL's or Activities of Daily Living.

I don't know if this is going to work

One thing I plan to do on a daily basis is eat, but I'm going to be busy figuring out how to survive in the real world, so my friend, Kelly, thought it would be nice to setup a food train for me.  You may have seen these before, only this one is for a paralyzed man instead of a new mother.

Here it is: http://www.takethemameal.com/meals.php?t=UXFX3954

No pressure

Feel free to sign up, but don't feel any pressure.  I probably won't starve to death either way, but it's something nice you can do to help out that would be appreciated.

I will continue to write my blog when I get out.  I enjoy writing it, and I will continue for as long as I have things I want to write about and time to write about them.  There will probably be an interruption when I leave the hospital.  And depending on my schedule outside, I may not be able to post every day, but I'll try.

I expect that I will go back to work at some point, but I don't know when yet.  I imagine that once I get myself a solid daily routine that I feel comfortable with, I will start to get bored, and once I start to get bored, I will start to want to go back to work.  That's how I see that happening, but I think I have a lot to figure out before it happens.

For instance, I'm going to need to get a car.  Yes, I can drive a car, but I'll need hand controls.  I'll want to pick a car that makes sense for me, and then get it modified.  Then I'll need to learn to drive it.  Getting a car isn't the first thing on my agenda, but obviously it's important.

I'm also expecting to start outpatient therapy at some point.  I don't know where or when yet.  I also don't know how often that will be, but I imagine I will continue working on some of the skills I learned here and do some strength exercises.

I expect to get my permanent wheel chair a week or two after I leave the hospital.  I'm looking forward to that.  It should be a lot nicer than the one I'm in now, but I expect that I won't feel comfortable in it right away.  We'll see.  Hopefully I like the one Todd picked out for me.  Later, I'm going to buy some fancy lightweight wheels for it.  They're going to make it so much nicer.  Todd said I should use the factory wheels for a little while so I appreciate the difference the lighter ones make, but I already know it's a huge difference, and I may not be able to wait long.

Beyond that, I don't know what I'm going to do when I go home.  I'm hoping to go to a Railhawks soccer game with Sue and Mike at some point to test my ability to tolerate outings and to experiment with handicapped seating.  I'm going to investigate all the restaurants in my neighborhood to make sure their sanitation grade is good.  I'm going to meet some of my neighbors and see if they want to be friends with a cripple.  I have no idea what else I might do, but at a minimum, it should be interesting.

Magical Sunday

Today I had absolutely nothing on the schedule, so I used the opportunity to stay in bed until 11:00.  It was magical.

When I got up, Gus called and wanted to come over for lunch.  Gus and Uyen and their daughter Evelyn, who is cute as a button, but whose name I still don't know how to spell, came over around 1:30, and brought me a sandwich from Firehouse Subs.  They also brought me a Coke.  Lunch was also magical.

Magical!

We ate outside on the patio by Starbucks, and enjoyed the magical weather, and then went inside and probably spent an hour admiring the kinetic ball exhibits in the lobby of the children's hospital.  It nearly lulled me to sleep.  You could safely describe it as 'magical'.

Evelyn asking me something precious

When Gus and Uyen left, I went upstairs and had a lovely phone conversation with my Dad about Father's day.  I wouldn't describe is as 'magical', but it was certainly nice.

Now I'm working on my blog.  I would say my day qualifies as magical.  The original title of this entry, started last night, was going to be 'Monotony', but fortunately, fate and some friends intervened and gave me a really nice and relaxing day.  Tomorrow starts my last week of in-patient therapy, but I feel rested and ready.  Bring it on.

Moving Day

Today, my friends moved a lot of my stuff from my house to my new apartment.  I'm extremely grateful that I have people who can do that for me, but I feel fairly helpless that I can't go participate in my own move.  I'm an extremely independent person, and I don't like to ask for help from anybody, but at least for the time being, I'm going to have to rely on a lot of help from everybody.

I want to thank everyone who helped move my stuff.  I literally don't know what I would do without your help:

• Caitlin
• Cullen
• Jessica
• Ben
• Rob
• Brian
• Gus
• Sridhar
• Wil
• Bert

Everybody but Gus.  Wil is hiding behind Jessica.

Apparently the move went well, and here are some pictures, but unfortunately, when my friends got to the apartment, the elevator was broken.  Besides the fact that they had to carry all my stuff up two flights of stairs,  a broken elevator is pretty worrisome since it effectively strands me either inside or outside my apartment.  A couple people my friends talked to insisted it has been a year and a half since the elevator broke last so hopefully there's nothing to worry about.  Maybe it's good we got this breakage out of the way, and it will be another year before it breaks again, but it's hard not to worry.

I found out from Mike and Sue this week that apparently there is a girl from their RIT alumni group who lives in my new neighborhood who is supposedly willing to help me out, so I'm looking forward to meeting her.  It's fun to make new friends.  Hopefully this one works out.

Today, I got a visit from Kelly and Lily, and I only had one therapy session with a guy I don't know.  I also got a visit from my friend, Wil, from work. Wil used to be my mentor at IBM, and it was nice of him to stop by to see how I'm doing.

Every day I feel like I'm doing a little better.  My confidence is increasing, and I'm feeling more and more ready to see what life is like on the outside.  I also think I feel better on the weekends when I get to rest and recover from everything the therapists put me through during the week.  It's nice to not be sore for a little while.

The Outing

Today, with very little planning or announcement, we went on an outing.  It was four therapists, Ashley, Eric, and myself.  Those are other patients.  We had to push ourselves all the way from the hospital to Franklin Street.  Except Eric.  He's got a power chair.  Google maps says it was a little over half a mile, but it felt like a lot longer.  It turns out that uneven brick pavement is not much fun to push a wheelchair on.  Especially if it's uphill.  Or downhill.  Or level.

There were several times when I didn't think I could make my arms go anymore, but ultimately it's good that I did because there was a Qdoba burrito in it for me on Franklin Street.  Also a Coke.  I haven't had a Coke in a long long time, and that may have been the highlight of my trip.

I meant to take some pictures for you.  I even brought my camera, but in all the excitement and cursing, I completely forgot.  Also, my sister showed up for a visit, and met us down at Qdoba.  While we were pushing home, she went to Maple View to get us some ice cream.  That made my day a little better.

When Jessica got back, she had a hat for me.  It's a balloon hat of a monkey climbing a... banana?  I'm not sure.  Whatever it is, it's awesome, and it brightened my day some more.

Monkeys are funny!

 Later, Katie and I worked on putting on and removing shoes.  That went quite well, so that make me a little happier.

The monkey is watching

Then we worked on some transfers onto weird surfaces like a couch and a chair.  The transfers went really well so that made my day a little better.

The monkey says, "transfer!"

Later, Jessica went and got us Mediterranean Deli for dinner.  That made my day a whole lot better.

Delicious food

Jessica stayed with me until about 8:00, and then Bert showed up to spend the night at 10:00, so I have another guest.

Bert hates this picture

Bert is currently busy making me laugh until my surgery hurts, so I'm going to end this post, but it has been a great day.  I wish they could all be like today.

Grumpalupagus

That's Emily's word.  She calls me that when I'm in a bad mood.  Unfortunately, today I was a bit of a Grumpalupagus.

Grumpalupagus?

I don't like being in a bad mood.  I don't think people should have to put up with me when I'm in one, but I was in a sour mood all day, and you can't hide from people when you're in rehab.  I've been trying to figure out what my problem is all day.  I think it's a combination of a two things.

1.) They are backing off my morphine dosage.  I've been on a small amount of slow-release morphine since I got here.  I didn't think it was doing anything, but today I got half the dose, and I was exceptionally sore all day.  Every part of my body that feels anything feels pain right now.  Coincidence?  Probably not.  And I need to be all the way off the morphine by the time I leave.

2.) The fact that I'm leaving soon is becoming real to me.  The visit to my apartment has made me think about it more, and how hard it's going to be living without supervision.  This morning, I tried to sit up in bed without using the rails on the hospital bed, just to prove I could.  I failed miserably.  There was just too much pain and stiffness first thing in the morning.  Then I used the bed rails to cheat.  When I get home, there will be no cheating.  Either I get up, or I don't.  I hope my surgery stops hurting one day.  That would make life a lot easier.

Speaking of my surgery, I finally had Emily show me some of my x-rays today.  You can see the rods and the screws.  There are basically two rigid rods, one on either side of my spine, and long screws attaching each rod to each vertebrae.  The screws look like they might be almost two inches long, so that was exciting.  I'll post a picture here when I can get one.

I think the highlight of my day today was Emily telling a PT student from Duke that I was a model patient because of all the stuff I was able to do.  It made me feel good in the midst of my crappy day.  Then she made me do simulated floor transfers for 30 minutes.  I thought my arms were going to fall off.

Tomorrow should be a better day.  My sister is supposed to visit.  Also, Courtney has masterminded a trip out to Franklin Street.  I think they're going to make me push my wheelchair all the way there and back.  If they do, I suspect my arms will actually fall off.

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.