Just to set the record straight, I’m not brave, okay?
I live with spastic cerebral palsy (CP) and relapse-and-remitting multiple sclerosis (MS). I can’t count the number of people who have called me brave. I always smile and nod when they say this, but the truth is that bravery has nothing to do with it.
I was born with CP and have lived with it all my life. I am in some kind of pain twenty-four hours a day, seven days a week. There are some days that are more manageable, where it’s at a low-level hum running underneath my skin. Other days, the CP is extremely active. The spasms change their position in my body from day to day; there’s no rhyme or reason to it.
The MS is on the other side of the spectrum. I have symptoms that come and go and when they return, they are slightly different: numbness, dizziness, vertigo, problems speaking and getting my words out. I have weakness and deal with an almost constant fatigue. I have bladder and bowel issues and there are times where my brain is so filled with fog, I can barely see straight.
Now, the doctors have been stymied since I was diagnosed with MS. According to everything they know medically, it’s impossible to have both CP and MS—you either have one or the other. Yet here I am, proving all their scientific theories wrong.
I’m not brave. I am a fucking warrior.
See, here’s the thing: Everyone living with a disability or a disease comes to a point in their journey where they decide to tell the self-pity party to fuck right off. I made that choice in 2013 and ever since that day, I’ve worked to get better, or what passes for better for me.
I had to change my life, flip it over, and look underneath. I had to re-evaluate what meant the most to me and what I was capable of doing. As I came to terms with that, I decided that I wanted to truly live, to experience life, not just exist within it.
With that decision made, I had to learn to do a lot of things over again that I’d done without thought before: walking, talking, simple chores, even bathing myself. I had to relearn what my body could do and what its boundaries were. This also applied to my writing, which I discussed in my post, Learning to Write in a Different Way.
Over time, I got stronger. I gained more balance. I understood my body better. I climbed the flat mountains and eventually began to see my MS as a gift, something that made me stop and take note of the world around me. It forced me to take stock of what I had to live for and what the future might bring. I chose to see the world and my MS in a positive light. That’s just the way I roll. Life is too short to dwell in negativity. That’s what works for me.
None of that has anything to do with bravery. Not the choices I made, not the MS and CP that I live with every day of my life. Not the journey that it’s taken me on. None of that has one thing to do with bravery.
Perseverance, yes. It has everything to do with that. I carry perseverance within me in spades. Every person that lives with a disability or a disease is filled to the brim with it. We possess a drive to live with a thirst to experience life despite our boundaries, we are full of panache, determination, gumption . . . and a fuckload of perseverance.
Oh, and quite a bit of sparkle. 😊
Jamieson Wolf is an award-winning, number one bestselling author of over sixty books and writer of Two Steps at a Time, a blog about having multiple sclerosis and cerebral palsy. He is an accomplished artist who works in mixed media, charcoal, pastels, and oil paints. He is also something of an amateur photographer, a poet, a perfume designer, and a graphic designer.
Jamieson currently lives in Ottawa, Ontario with his husband Michael and his cat Tula, who is fearless. You can read more about Jamieson on his website or his blog, and can connect with him on Facebook and Twitter.
I love that even when you rant, you still come back to the sparkle! ❤
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You’re amazing, whatever you choose to call yourself!