I was asked to speak at a conference at work about what it is like to live with two invisible disabilities.
I immediately said yes. I’m open about my disabilities; heck, I write about it on here for everyone to read. I’ve given talks to small groups before but never one the size of todays group. Also, they are my coworkers. That added another aspect to consider. How far did I let people in? How much was too much?
In the end, I decided that the best path forward was to be completely honest; it’s a lot easier that way. The talk was well received and it’s my hope that people learned something. Read my talk below and I hope you enjoy it!
I live with two invisible disabilities. I was born with Spastic Cerebral Palsy and in 2014, after nearly a year of being ill and not knowing why, I was diagnosed with Relapse and Remitting Multiple Sclerosis.
Both of my disabilities cause their own challenges. I am in pain every day. My Cerebral Paly and my Multiple Sclerosis both cause spasms but there are a host of different things I deal with on a given day which include crushing fatigue, brain fog and difficulty speaking. Multiple Sclerosis has a list of twenty-eight different symptoms: fatigue, vision problems, tremors, numbness, cognitive problems, dizziness, vertigo and more. I’ve experienced all of them.
There are days where I have difficulty walking and other days where it takes almost all the strength I have just to get out of bed and get dressed. There are others where it’s like I’m looking at the world through a thick layer of glass where nothing looks clear. Having both Cerebral Palsy and Multiple Sclerosis is not supposed to be medically possible, according to my neurologist. I guess I’ve always done things my way.
I find that because both of my disabilities are invisible, people really react when I walk with my cane. They often asked what happened to me and when I tell them about having Cerebral Palsy and Multiple Sclerosis, the response that I get most often is “You don’t look sick.” When I explain that I am on medication, I often get told “So that’s okay then, you’re cured, right?” When I explain that neither of my disabilities will ever go away, the look I get back is one wonder.
I’m often told that I’m brave for living the way I do. I can honestly say that bravery has nothing to do with it. I do have a will to live despite the pain, the fatigue and not knowing what one day will look like when I wake up in the morning. There are many joys to experience in any given day.
I’ve used positivity to get through my challenges. My motto is sparkle on because I’ve learned that we can only see the stars in the dark. I try to overcome my limitations every day with positive thinking and it helps to a degree. However, on the days where you’ve seen me smiling, that might have been a day where I was in a lot of pain. Or maybe those days where I might seem down? Those are days where it’s taking all my effort to concentrate because of chronic fatigue. On those days where I seem quiet? It’s usually because I am having difficulty speaking and I’m using my words sparingly.
When you look at me, you have no idea what I’m going through. And you know what? That’s okay. One of the reasons I’m so open about living with my disabilities is that if I don’t say anything, you won’t know. My hope is that by being so open about living with Cerebral Palsy and Multiple Sclerosis, it will make you aware that there are others around you that are living with any number of invisible disabilities and you have no idea.
In the end, I just try to take things one day at a time. I don’t know any other way to do it. Thanks everyone and sparkle on!