Wednesday, July 09, 2014


Good News, Bad News, and so on...

OK, so June slipped by without an update.  It was a busy month and, to be honest, I didn't feel much like writing.  Some good things happened, and some bad things happened.  Most of which is actually a matter of perspective.  First, and perhaps most important, is that my father retired.

After forty three years of serving the children of Indianapolis as an educator and administrator, my father is finally stepping aside to let someone else take the reigns and deal with all of the political and social BS that is constantly placed in the way of providing an exceptional education to our children with special needs.  Starting out in the early '70's when children with mental, emotional, and physical disabilities were banished to small classrooms that were originally intended to be large basement supply closets next to boiler rooms, or not even able to access the school at all; my father has not only witnessed a change in the way children with special needs access education and are perceived by their peers, but has been an instrumental part of that change in our city.  As he leaves his talented team at Indianapolis Public Schools in the exceptionally capable hands of his Assistant Director of Special Education, Mary Lowe, he walks away from a department that has been recognized as the shining star of the system.  A department that, due to its success, has remained largely untouched by the new IPS administration.  Though recognition has never been dad's goal, last year Mayor Ballard presented him with the Mayor's Lifetime Service Award, which he truly deserved, just as he now deserves this time to enjoy his days without the daily headaches created by the politics of a large school system.

What will he do with this newly acquired free time, you might ask?  Most likely whatever mom wants him to do, though I know he also plans to let his inner artist out of its shell.  That said, his first real action has been to take the family to South Haven, Michigan, for a week of vacation at the beach.  I'm currently sitting outside a nice little cafe writing this post while he and mom explore the town's cute little shops.  Sarah is at the house we are renting, waiting for the two teenage girls (Madeline and her best friend) to wake up and start their day.

On the bad news front, its time for me to reveal the fact that I've been dealing with some strange gastrointestinal issues for the last year.  In November I finally accepted the fact that I couldn't explain away the issues that I had been experiencing about once a month since last July as food poisoning.  It has all of the symptoms of a food borne illness, but I've never heard of someone getting food poisoning on a cyclical four to six week basis.  I've seen several different doctors, including an Endocrinologist, but as of yet there is no diagnosis for what I'm experiencing.  However, as a result of seeing the Endocrinologist I have been diagnosed with type two diabetes.  Rather than focusing on the negative, I choose to see this diagnosis as a wake up call that its time to change the way that I've been living my life. 

For the last eight and a half years I have assumed that the energy that it takes for me to move around, whether on prosthetics or in the wheelchair, was enough exercise.  The fact is that I was wrong.  Before I became an amputee I worked in an industry (hotels) that due to the nature of my job required me to be in almost constant motion.  I spent very little time sitting at my desk.  The constant pile of paperwork that covered almost every inch of my work space was proof of that.  I could eat whatever I wanted and rarely gained any weight.  Now, eight and a half years later, I've spent more of that time sitting on my ass than I have on my feet, and I never changed my diet to compensate. In fact, as the years wore on I've indulged my sweet tooth more than I did during my career days.  (Perhaps, on a subconscious level, this has even been a coping mechanism).

Regardless of the reasons, the point is clear, I've got to change my diet and activity level to get the diabetes under control.  According to the doctor's assistant, I'm not so far gone yet that this isn't reversible, so my goal is to beat it all together.  As another positive incentive, as I get my physical condition into better shape I hope to also reverse the "severe sleep apnea", which was also diagnosed earlier this year.  I've been sleeping with a mask for three months now, and though I am now able to sleep with it, I'm sick of waking up in the middle of the night with a tube wrapped around my neck or under my back, or the hissing noise of air escaping the exhaust port and blowing on the sheets.  I finally have a nice new mattress that will allow me to sleep on my stomach, which is best for the tendon and muscle contracture in my hips, but I can't sleep on my stomach because of the stupid mask on my face!  Changing my diet, exercise habits, and achieving a higher level of physical activity in general will correct all of these issues. 

While I'm not happy with either of these diagnoses, and still quite disturbed that the doctors have not given me a diagnosis that explains the symptoms that led me to see these doctors in the first place, I choose to see these as issues that are leading me to make positive changes in my life.  Yes, I do occasionally look up at the sky in exasperation and ask God why he needs to keep kicking me so hard, but I know the answer is that I am stubborn, and I also know that I am still quite lucky in the grand scheme of things. 

Where am I going with all of this?  To my closing two paragraphs.  The subject of which takes us back to the Power Knees that I spoke of in May's blog post.  Towards the end of June I did get to take them for a test drive, and man are they cool!  My Prosthetist closed his office for a day and a half to give me this rare opportunity.  Two representatives from Ossur dedicated a day and a half to training me to use all of the features of these robotic knees, and we barely scratched the surface of the functionality and activity level that I can access with these prosthetic tools.  For the first time in eight and a half years I was able to rise from a seated position without using my upper body to push my continually increasing mass off of the chair.  Mere minutes after standing up I balanced on my "feet" without having to hold onto anything for support for longer than I have since October of 2005.  I was able to walk greater distances on varied terrain without loosing my breath because the knees work on their own once I start moving.  (All I have to focus on is moving my hips and maintaining my balance).  I was able to climb a step without pulling my body up with my arms.  For the last seven years the C-Legs have allowed me to access the community in ways that less advanced prosthetics would never allow, but the Power Knees could restore my ability to do things like cut my own grass safely without getting exhausted (will probably need to work up to that), go for a longer hike in the woods, perhaps get back into martial arts (many of you may not know that I hold two black belts in Shorei Goju-Ryu, and a good friend, Mike O'Brien, is interested in adapting a style of Kung Fu for me) and maybe even take my girlfriend out on a dance floor!

What's the next step?  When I get back from South Haven I have an appointment to meet with my primary care physician to get a prescription for the new legs and discuss the details of the letter of medical necessity that we will need from him to submit to my insurance company.  It's a safe bet that they will either deny the legs, or pay so very little on them that my Prosthetist and I will not be able to cover his cost.  So, we are looking at developing a new fund raiser (if necessary) and also producing a documentary about the challenges faced by both Prosthetist and patient in getting an advanced set of prosthetics like these, and what impact these prosthetic tools will have on the health issues that I am facing.  Cory Fisher, a friend I have known since as early as sixth grade, and his wife Becky were there on the first day of my training, documenting everything on video and also conducting interviews with all involved.  Be sure to check back frequently, as I will post some initial videos and pictures (caught on cell phone) as soon as I return home and am able to dedicate some time to getting them on the proper media!  Once Cory and Becky have an initial trailer for the documentary and fundraiser prepared, I will post that as well (this may take several weeks as we still have some footage to film).  Until then, listen to what your body and spirit are telling you, and hopefully you can avoid the repeated kicks in the butt that I seem to be getting!  Live and be well, my friends!                        

So happy for your dad. I hope he feels tremendous satisfaction from all his years of service. He should!

As for the diabetes diagnosis, it's not what you wanted to hear, I'm sure. But of course, you're already seeing the blessing in it; the opportunity and motivation to improve your overall health. Hopefully, these changes will take care of those gastro symptoms you've been suffering from. Not fun, to say the least.

I really liked watching you try out the new legs in the video clips. So much promise for an even more mobility! Dancing! Ah yes. :-)

Much love to you!
Jeremy so many people love and care about you. Hang in there! Corpus friends send their love, Linda

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