“You OK there, Kevin?”
“Fine” is all I can muster between choking coughs.
Sometimes that’s the end of the conversation. Those who know me will go back to their own business; the moment fades as quickly as it first erupted.
Those who don’t know me as well may linger a bit longer, their focus remains on my persistent cough. After a while everything is calm again. Sometimes the topic is dropped, other times I have to explain myself a bit. I prefer to not leave the thought in minds that I don’t know how to eat a sandwich, or that I take such obscene bites that I can’t even swallow my food. Sometimes my mouth just ‘forgets’ how to swallow, at all or just completely.
Such is the world of MS……………..Sometimes.
The waxing and waning of my disease has become quite extreme over the past year. Sometimes I can do things. Sometimes I can’t. Sometimes there is every iteration imaginable between the two.
After I was first diagnosed with MS I generally avoided sharing my disability with others. Fear of unknown reactions, shame for feeling weak, and my stubborn refusal to give in were my reasons. I thought that if I didn’t ‘look‘ disabled then I could avoid the reactions, shame, and stubbornness. Sometimes there we issues, but not often. I could handle the occasional issue.
That’s not the case anymore. I always look disabled now; sometimes more than others.
My willingness to share my disability with others is stronger today. A few things have helped me grow in this openness. I’d like to proudly say that I am no longer afraid of the reactions and shame. That’s not completely true. My greatest fault will always be my stubbornness. As I learn to get over the fears of what others may think about my MS, I have a great catalyst….fears of what others may think if they don’t know it’s my MS.
· I don’t take such obscene bites that I can’t even swallow my food; sometimes my MS acts up.
· I’m not a clumsy oaf as a stumble, trip and drop my way through the day; sometimes I have worse days than others.
· I’m not being inconsiderate if I can’t quickly get out of your way or I bump into you; sometimes…..
· I’m not drunk when I sway, stagger and slur; sometimes…...
I’m more willing to talk about my MS when it helps me; I guess I’ve earned that. I’m less resistant to accepting the help that I sometimes need; I am glad I’ve learned that one!
Overall, I’m slower at some tasks these days. Sometimes I can’t perform some of the simplest tasks without difficulty, if at all. I need help more often than I care to admit. This weekend I walked in the National MS Society’s WalkMS. The 5km was interesting since my new legs haven’t handled that much yet. I needed help sometimes; my cane was used for the first time. It was easier with this group, since my fear of reactions and shame doesn’t exist. Maybe my cane may be my way of sharing my disability with others. My clumsiness, swaying or staggering may look less oaf-ish if I wield a cane!
I don’t want to change the way people see me. I am still the same strong man as before. I just need a little help and understanding because sometimes I can’t do the things I used to do.
But, quite honestly, I am happy and grateful because sometimes I still can!