Category Archives: chronic conditions

Child care, children's therapy, chronic conditions, chronically ill children, family impact of MS or other trauma, family life, Uncategorized

Disability

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What, you mean that doesn’t look like a comfy sleeping position?

Disability is relative and not a  good determinant for value.

Our family recently found ourselves in need of a new dog to be a companion to the hyper one we already had.  With our family’s make up of various medical conditions, we got excited when J saw pets with disabilities.  When we  realized they were close to it, J started combing through their dogs looking for an ideal match.  We all piled in the van and headed off to meet a one-eyed dog in need of a home.  However, the one-eyed dog was intimidated by our loud and crazy 4 kids and hyper dog.  It wasn’t going to work…but thankfully the lady who runs the place thought of another of their dogs who might match.

Ziggy had his back legs/hip hurt when he was younger, but he is such a bundle of happiness.  He loves everything and everyone.  He trots after our hyper dog or plays stationary defense when he gets tired.  He lets our two-year old lead him around.  The biggest “disability” he seems to suffer is an inability to jump.  When I talked about him to my coworker, she said, “That’s a disability? I wish my dog had that disability.”  I figure his making the most of life without being able to do something other dogs take for granted just means he belongs with us.

Last week, I had a conversation with my son about MS in my life.

O: “Do you ever wished you didn’t have MS?”

Me: “I used to wish that I didn’t have MS, but over time I have come to accept it as just a part of the hand I was dealt.  I realized getting angry about the head aches, lack of dexterity, poor memory, etc. was not really helping me.  In fact the more I focused on it, the worse I felt.  In truth, I think I hit the lottery when it comes to the hand I have been dealt to live.  I grew up with parents who cared about me.  I’ve always had enough to eat and opportunity to learn.  Now I have a beautiful wife, four kids, a good home and some dogs to keep us company.”

O: “The headaches and stuff suck though.  I wish you didn’t have it.”

Me: “At this point I think wishing things like that is about as useful as wishing I had been born with the talent to be an NFL star making millions of dollars.  Wishing to be other than I am seems to belittle so much of what I am and can do.  I am probably not going to gain fame from my singing unless you can figure out how to make me famous for how poorly I sing and dance.  My bet is you will not grow to be the tallest man in a generation.  I think there are still a ton of things you can do with your life.  Should I waste time wishing you were a giant or just appreciate you for the smart, athletic and empathetic kid that you are?”

O: “I guess that makes sense.  It’s your whole thankful for what we have bit again isn’t it?”

Me: “Yup.  Our family all came together bonded by our ability to live with medical conditions.  I can not wish too hard for us never to have had our conditions.  Without them, we might never have met, much less become a family.”

 

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appreciate the good life, chronic conditions, defining success, family picture, introspection, life well lived, life with MS, MS, MS cognitive function, MS medication, MS symptom progression, MS symptoms, Multiple Sclerosis, running, Uncategorized

Ten and Forty

This picture dates back to days when I was flaring before I was diagnosed with MS. I was lucky to spend the week with my mom, father-in-law and brother-in-law rafting down the Grand Canyon.

I realized a couple of weeks ago that it had been ten years ago that I had horrible headaches. For months I had headaches bad enough to wake me up in the middle of the night. The irony is the headaches would only go away with sleep. I used to ask my head, as if it were separate from me, “Why do you wake me up to tell me to sleep!” I might have yelled except J was sleeping, and the prospect of yelling with those headaches seemed abhorrent. I went to my primary care doctor, an ear nose throat doctor, an ophthalmologist, and got an MRI. I took steroids and antibiotics. I thought I had been tested nine ways to Sunday. During all this time, the headaches came in waves with good and bad days. It was like this for almost a year before I was diagnosed with “probable MS.”

However even during this time, I was incredibly lucky for I had almost an entire good week perfectly timed to allow me to go on a trip with my mom, my father-in-law, and my brother-law to go white water rafting down the Colorado River through the Grand Canyon. During this week, I rarely needed head ache meds, though this was the beginning of my realization those meds do nothing for me. It was only on the last two days that I began to have problems again. At the time, this was a very welcome break from the stress of feeling as if my eyes could shoot laser beams.

As I hit the ten year mark, it seems a natural time to look back and ask what MS has done to me.  How has it changed me?  Even with Tysabri, I still progress.  It is just a slow progress, almost imperceptible if one’s time frame is carefully chosen.  I saw a doctor on a research board comment about how much more seriously MS would be taken if all the damage happened at once.  Spread out over months and years, patients are assumed to adapt to our invisible ailments.  So, how do I see myself changed?

The biggest changes aren’t to my physical abilities.  Yes, buttoning shirts quickly was nice.  Playing competitive sports, especially soccer, was how I used to draw confidence and get over the worst parts of life.  Multitasking despite distractions sure made life easier. However, these things are small compared to the biggest change I see in myself.

The biggest change I see is far more insidious, how I measure success day to day.  For most of my life, I have tried to progress, to do better today than yesterday.  As time has gone by, I find myself ever more trying to stave off degradation rather than improve.  I run three or four times a week, and I keep track of my times and abilities to run intervals during my run.  More and more often I find myself changing goals from running a marathon to running another half marathon.  I find myself satisfied equaling glories past.

In moments of honest reflection, I have to admit much of what I see on these fronts could be as much a factor of rapidly approaching forty years old rather than ten years with Multiple Sclerosis. I simply fear MS ages me faster and faster year by year. Still, my bet is many people approaching 40 suddenly find themselves noticing all the ways we are no longer 21. C’est la vie.

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