The Wheeled World

April 7, 5 days after my 42nd birthday.  42…could that be more ancient???  Not if you asked me at 17.  But then again at 17 what the he–hockeystickshockeysticks did I know? 

I have to say I’ve been a little bit disheartened by www.disaboom.com. They pretty much targeted exactly the market I was looking to serve.  Congrats to them and there efforts, hard work and dedication to bring the site into existence.  It really looks great!  It deflated me a bit.  I even made a proposal to them and it…so far…has gone nowhere.  NOWHERE is a funny, funny word.  If you are super optimistic you can see NOW HERE !  So, given the current economic atmosphere, opportunity is NOWHERE…YES…opportunity is NOW HERE!!!

So who cares if disaboom.com is spending $50k a month on web development.  I can answer your questions for a whole heck of a lot less. 

What is life like as a wheelchair-user? 

 HEY wheelchair-user, or friend, or family, thereof…write me a question OR write me a response.  Just like “enquiring minds,” thewheeledworld wants to know :). 

e-mail: michael@TheWheeledWorld.com…OR just use the reply form at www.thewheeledworld.com.  Have a pleasant day.

Although not nearly as quick or as smooth as “normal,” I was able to lift myself up into the van’s driver seat…YAY!  However I wasn’t able to pull the wheelchair in yet, Debby helped out with that.    It is somewhat strange though, resuming something that you’ve been doing for 25 years after a month long break.  It felt a little funky driving again, although it came back to me pretty quickly.

Nonetheless, it was much better in the driver’s seat than laying on a raft on the van floor (although that raft was pretty comfy!).

So the good news is I can get into the van and the recuperation is moving right along.  I did have quite a bit of soreness today, probably from a lot of activity yesterday. But in time, even the soreness and aching pain will go away, just like the sharp, knifing pain has disappeared.

Here’s a link to a video that basically shows how my surgery was performed.  Mine was different than is presented here in two ways: 1) my surgery was at the thoracic (chest) level; and 2) I had some donated dura mater attached to cover the spinal cord where the lamina (bumpy top portion of spine you can feel in your back) was removed.

I am moving a bit better nowadays, but still need assistance for some transfers and other tasks.  I have not yet attempted to transfer up into van driver’s seat.

Well I didn’t put much stock in the warm milk thing, however it’s undeniable that the past three nights have been pleasantly restful for me :).  There of course may be other factors involved, but I’m confident that it wasn’t so much the milk itself that got me to sleep, rather an ingredient I added to the milk. That magical ingredient which provides abundant nutrition and blissfull hapiness is honey.

Not just any old honey, my friends. No sireeebob!  This is the Maryland State Fair Champion , exclusively from Honey Harvest Farm.  ***

While not a scientist, I’d venture to say the pure natural goodness in the honey is exactly what allowed me to finally get some sleep.  ENJOY your evening!

***In the spirit of full disclosure, Debby and I are the United States Southwest Region Distibutors for Honey Harvest Farm; and my sister and brother-in-law are the principal owners of Honey Harvest Farm.  (so there is a potential for bias…smile.)

For the last four nights I’ve practically gotten no sleep.  I lay in bed, wide awake, wanting to go to sleep and thinking about the pain in the butt of insomnia.  Start out on my stomach…after awhile figure that’s not working, so go to left side…then got to right side…then back to my stomach with a pillow under my chest (ouch…back not ready for that one), then you guessed it…back to the left or right or my back or whatever.  Finally get to sleep at about 4:00am and then sleep ’til 10:00am.  No wonder I can’t sleep I’ve only been up since 10:00am!  Well, I got up earlier today AND we went to the park!  Yea sunshine!!!  Anyway I hoped to tire myself out a bit and now, of course, I am drinking some warm milk, as I type :).  I’ll let you know how it goes.  PLUS, as you are reading my complaints…do know that I am grateful!  Eventhough I can’t sleep, just a week ago I wasn’t even able to change sides and roll over by myself.  So I’m thankful to be able to move better now, and yes…I’d be REALLY thankful if I can move…and sleep .

Last week I asked about person A and person B:
The news reports on persons A and B as both sustaining life-threatening injuries which have caused both individuals paralysis from the neck down.  Over the next several months person A regains use of arms and legs, while person B shows no improvement.  Why?  (Post your answers and I’ll follow-up, next week.) 

Well, no posts.  I did get a couple of e-mails.  The answer was embedded in the paragraph above the question…”Given all the complexities, it would be safe to say that no spinal cord injury is identical.”
In the hypothetical story person A had an injured–but only bruised–spinal cord.  When swelling went down, function began to return.  Person B had an inured–and severed–spinal cord.  Once the spinal cord is cut…it is cut.  As of now, there is no “cure” to reattach or regrow nerves in the spinal cord.

Hey…guess what?  That milk might be working :).  I’m going to bed…good night.

It was about this time three weeks ago that I was waking up from surgery.  About three hours ago I just had my stitches removed at the Cedar Park, TX clinic.  Thanks to another great friend I was able to be transported to the doctor appointment on a cushion of air.  Well, it was a pool raft laying down in the back of my van, but it was only air to my back.  So THANKS for the support :).

I’m looking forward to more improvements this coming week.  The pain is decreasing and yesterday I was able to get myself OUT of bed.  The bed is higher than the wheelchair, so I used gravity to help get me out of bed and into the chair.  Debby is still helping me into bed, and of course still helping onto shower chair and in many other ways around the house.  BUT, that is an improvement, for me to able to transfer out of bed and soon, perhaps, other improvements will appear.

I haven’t spent much time outside since the surgery.  I did roll outside of the Comfort Suites hotel for about 10 minutes last week, in Maryland.  It was a beautiful day, but quite windy.  In fact while sitting out front the wind kicked up and pushed me into the parking lot.  My balance and strength being compromised, I was barely able to stop myself and wheel back inside once the wind stopped!

This morning, I just had Debby and my Mom slowly lower me down the doorway onto our back porch.  We all sat out there with the dogs for about 1/2 hr.  It was wonderful to get the warmth of the sun on my back.  AND there is a very nice breeze that comes through our backyard which made everything even more pleasant. 

I’m looking forward to being able to bend again in the future and get myself in and out and up and down the ramp into the yard. 

Debby counted 29 stitches in my incision.  If I was a doctor, I don’t think I could stop at 29.  Surely they could have evened out to 30.  In fact, the scar is big enough they could have gotten closer 40 or 50!  But maybe the doc was doing me a favor…Stitch Removal Services could be billed on a sliding scale: 1-9, x$; 10-19, xy$; 20-29 xyz$;  30 or above, financing available :).

Well, I’ll find out soon enough.  I’ve got a doctor’s appointment scheduled for Monday to remove the stitches (3 weeks post-op).  I’ll let you know how it goes.

Meanwhile, things are moving along slowly on the home front.  I’m working on getting back into the swing of things around the house, although I’m unable to do nearly anything but eat, and use the bathroom on my own.  Which I am super-thankful for!  Most people really never think much about their ability to use the bathroom, and just take it for granted…myself included, for 17 years. 

But let me tell you, after a spinal cord injury (SCI), bathroom issues jump right to the top of the list of importance for the person with the disability.  Of course the first thing you think about is walking.  That’s the number one question of friends and family after a SCI, “Will he/she be able to walk again?”  Many times the person with the SCI will also become fixated on “walking again.”  There is a lot of MIS-information which gets reported relative to a person sustaining a back injury/spinal fracture/damaged spinal cord/severed spinal cord.  The intricacies of the spinal cord are vast.  The highway of nerves serving as the communication conduit between your brain and your body is as delicate as it is amazing.  Given all the complexities, it would be safe to say that no spinal cord injury is identical. 

The news reports on persons A and B as both sustaining life-threatening injuries which have caused both individuals paralysis from the neck down.  Over the next several months person A regains use of arms and legs, while person B shows no improvement.  Why?  (Post your answers and I’ll follow-up, next week.)

Back to the bowels…

I know many, many wheelchair-users, who would experience a significant increase in their quality of life by regaining full and “normal” bowel and bladder control.  In fact, when asked the question if they could get only one thing back–bowel & bladder or walking again–the clear-cut winner is regaining bowel & bladder control.  That may be surprising to the casual reader who has not personally experienced the embarrassment, the mess, the complete inconvenience, the stench, and the clean-up of body; of wheelchair cushion; of furniture; of car seat; of whatever.  Not to mention the physical and mental fatigue associated with the whole ordeal of a bowel and/or bladder “accident.”

I had to get back into bed today around noon, because I was very sore and hurting.  Debby still has to help me in and out of bed.  The pain is still hanging around.  Well, I guess that’s what happens when your back muscles get sliced open and stretched, your spine gets manipulated and spinal cord gets drained, and then you get sewed back up.  Obviously there is going to be some pain involved with that process and reovery.  SOOOOOOOOOOO, I’ve decided not to mention anything about any pain from now on.  It will resolve itself when it is suppose to resolve itself.  My job right now is to get plenty of rest, nourish myself properly and don’t over-exert myself, and allow my body to do what it has to do, which it will naturally figure out without me over-analyzing.

 The body really is an extraordinary piece of creation.  It is amazing how it all works together and even after trauma is able to recuperate and continue moving forward.  As a baseball player, it always was amazing to me how an outfielder can see a ball being hit 300 feet away, turn and immediately run in the direction of where his mind has calculated the ball to eventually intersect with his outstretched glove.  Velocity, spin, wind, humidity, trajectory all taken into consideration for the flight of the ball.  Distance, grass height, landscaping, speed of legs all taken into consideration for arriving at the point of intersection.  All of this is being calculated and executed simultaneously and, near the end, a desion is made on whether you need to jump a little higher or slide under the ball or back off, keep the ball in front of you and field it on 1 hop because there are two outs in the seventh inning and your team is up by 5 runs.  You can’t really think about all of that, you just do it.  So I must do while recovering from the surgery.

AND I have a great team of friends and family that are helping to support that recovery.  Yesterday our neighbors, who watched our house for us and even went grocery shopping so we’d have some food upon our return, Saturday, brought over a super-yummy chicken and wild-rice casserole.  It was very good and we even have some leftover for tonight :).  AND, as I began writing this blog post I munched on one of the homemade brownies to get a little extra energy. (oops, I forgot I poured a cup of hot tea about 10 minutes ago…)

Anyway, I may have already said this, but thanks very much again to all who had us in your prayers and who all so generously pitched in to make this operation a success.  I will keep you all posted and will be able to follow-up with more detail in about three months.

Right now, I still have the stitches in and am looking to schedule their removal early next week, per the docs instructions.  One step at a time, keep moving forward, it’s a marathon, not a sprint :).

Wow, it has been a long journey.  Tonight is the last night at the hotel.  We fly back tomorrow to Austin.  The pain of the surgery is subsiding and is beginning to be controlled by pain medication.  Wednesday I could barely move without having excrutiating pain.  Tonight I still have pain, BUT I can move more freely.  I’m unable to transfer without assistance, but am able to help more when being helped.  Everyday, little by little, things will continue to get better.

Yesterday, my friend Wayne came and made a repair-shop housecall.  He came with tools and finished alterations to my chair that were started at the NIH rehab.  I can now move more freely and securely in my old chair until I am able to get a chair that properly fits me.  Wayne’s repair shop has come through in the clutch for me on many occassions.

My family has been tremendously helpful and supportive.  Today my sister, Laura, and brother-in-law, Ron, graciously drove all the way down to NIH to pick up some meds that weren’t originally prescribed in the quantity needed.  So now I’ll be set until I am able to arrange transportation to my doctor’s in Texas.  Thanks to all my family.  If I haven’t said it enough, I love you all greatly and am blessed to have you all in my life.  And the love and warmth that you’ve extended to Debby is beyond any words I could express.  We are so very grateful.