Recently, my sister and a dear friend both called me brave because of what I do, or try to do, even though I have multiple sclerosis (MS). Folks with MS call themselves MS Warriors. The “warriors” implies bravery. However, I do not feel brave.
Typing this and other MS blog posts, writing two novels last year—Chronic and Geri, creating MS v-blogs, chatting on social media and walking our dog once or twice a day are not acts of bravery. They are acts of putting up with my MS symptoms and doing what little I can do. The Warrior in me does not even combat my MS. It is there. I cannot make it go away. I cannot fight it. I just put up with it.
I am what is called secondary-progressive MS. Symptoms come and seldom go. (I was relapsing-remitting MS for 15 years; symptoms came and went.) My legs grow weaker. My knees hurt. I wear knee braces and walk with a cane. When I walk our dog, I sit a lot. He puts up with me. My head hurts 24/7, other than when I am a sleep. I sleep a lot. Wake up to go pee? Head hurts immediately. I have moving, throbbing pains sometimes in my shoulders, sometimes in one hip and then the other.
Sound weird? MS is weird. While many people with it may have similar symptoms, no two people with it have the same symptoms. Some people have hits that come and go. Some people deteriorate at a slow and steady pace. Some deteriorate more rapidly and end up in wheel chairs…
Everybody I know with MS does what they can do. They can’t do any more than what they can do. Is that bravery? Or is that just living your life to the best of your ability?
I suppose I could do nothing, curl up on the couch and just sit there… Oh wait, there are times that that is what I do, because I can’t do anything more than that. Guess what? When I do that, my symptoms are the same as when I am doing what I am doing now, writing this blog post. I just have a bit more energy right now than when I can do nothing more than sit on the couch. That is the only difference. That is not bravery. That is barely getting on with life.
That’s what I do when I can do it: get on with life.
Brave? Brave is running into a burning building to rescue someone. If I walked by a burning building and heard somebody crying for help, I’d struggle to get my mobile phone out of my pocket and hope my fingers would stop shaking long enough so I could dial 9-1-1. That is me, pre- and post-MS. Not brave.
I think I know where my sister and friend are coming from. They cannot imagine having, living with, this disease. So they think I am brave because I live with it. But I have no choice! Hell, 20 years ago, neither could I imagine living with it. In fact, I was an emotional wreck the first two years that I had it. Brave? I actually said to my wife, “Dig a hole and bury me!” (Thankfully, she did not.)
If you want to know what I was like in the beginning, watch my v-blog, The Emotional Evolution of an MS Warrior. I was anything but brave, but I have evolved and reached what I would call emotional stability. That is not to say that I accept my MS and what it has done, and is doing, to me. That is to say, I accept that there is little to nothing I can do about MS. I have it. Or should I say that it has me.
I know a lot of people with MS. I think it’s fair to say that we all do what we can do, to the extent that we can do it. I know some MS Warriors who are still working, some who do volunteer work, some who host virtual get-togethers or support groups for those with MS, some who fundraise for the cure, some who do next to nothing because that is all the freaking disease let’s them do…
But brave, courageous, valiant, fearless? I suspect it is fair to say that we are all scared shitless of what this disease can do to us, of what we’ve seen it do to others… Maybe that’s what I am. Not a brave person, but someone who is running from his fears.
So what you see is someone in motion and you confuse that motion with bravery. That it is not. It’s just a refusal to quit, until MS forces me to do so. I plan to keep on moving until that day. That is not bravery. It’s not cowardliness. It’s just life.
That’s what I am: a person who is living as best he can, within his limitations. Like all the other MS Warriors I know. The happy ones. The sad ones. The energetic ones. The tired ones. The ones in a fog. The ones in pain. The ones on their feet. The ones with canes. The ones in scooters or wheelchairs. None of us are brave people. All of us are people. People who refuse to quit.
So maybe that’s what I am, who we are: perseverant, persistent, stubborn. Call me any of that and I will agree with your assessment. But this coward sure as hell is not brave!