Kevin Byrne: Reality
That sounds nice. A nice story of strength and determination, overcoming the odds and rising to pay it forward.
That sounds nice but it’s not real anymore. My MS is now pulling me back into reality, and today I see more reality than I have ever confronted before.
I am faced with some simple facts.
1. I am disabled and that disability is worsening. In the past, I would usually get by without “looking disabled”, for whatever that is worth. That’s not the case today. The peaks and valleys are extreme. On good days I can walk and talk with relative normalcy. On bad days I can’t. Brushing my teeth or getting out of a bath tub can become impossible tasks. My slurring can be so bad I sound drunk at 10 in the morning. My legs or arms will just stop working. Those peaks and valleys can hit 5, 10, 15 times in a single day! It can be exhausting to manage my limitations through prediction, preparing my surroundings and explaining to others those awkward moments.
2. My medical treatment options have been nearly exhausted. My body has rejected most active treatments to treat my MS and limit its progression. I am on one remaining treatment currently on the market; the rest have led me to infections in my leg, kidneys, bladder, and spine as well as bouts of anaphylactic shock and meningitis. Steroids no longer recover the increasing incremental damage done to my body.
3. This isn’t going away anytime soon, if ever. It’s April. Normally I am starting my training cycle for the annual National MS Society BikeMS. My focus is normally “how far can I push my body this year?” This year my focus is on successfully walking, raising a glass to my lips, or picking my 3-year old daughter up. I haven’t even started to grasp the issue of whether I can ride my trike, let alone how far.
I am faced with simple facts. What comes next is neither easy nor clear. How I move on from here will define everything that I am.
My life has been numb for the past several months, waiting for the resolution of “What’s Next?”
The reality is that this IS what’s next. My next challenge to display resilience, determination, and strength. My fight is still the same; my message just needs to face reality.
A World Free of MS is still the vision but we are nowhere close.
New cases of multiple sclerosis that are diagnosed daily remind us that we don’t yet have a cure.
The worsening of my own disability reminds me that challenges for those affected by MS are still there.
Not yet, but we will get there.
I wonder how far I can push my body this year…..
Please visit Kevin’s website: www.brieandkevin.com
Date posted: April 18, 2013