There was a show on public television from 1990-1995 called "Keeping Up Appearances". According to IDMb, it is a show about "A snobbish housewife is determined to climb the social ladder, in spite of her family's working class connections and the constant chagrin of her long suffering husband." I remember my dad, a big British humor fan, watching the show. Hyacinth, the female lead was constantly trying to portray herself as an upscale lady, despite her life circumstances to the contrary. It was the stuff that made for great comedy.
The truth of the matter though, is that there is probably a little bit of Hyacinth in each of us, at least one time or another. I remember having a conversation with my first husband many years ago. It was something about winning the Publishers Clearing House Sweepstakes. I'm not sure what sparked it, but it ended up with him accusing me of caring so much about appearances that I wouldn't answer the door to win the Publishers Clearing House on film if I were still in my pajamas looking less than stellar. The sad thing was, at that point in my life I was so insecure, he was probably right. Ironically that was also probably one of the least stylish times in my life. I suspect jammies and disheveled wasn't much of a loss.
Still, it makes you stop and think about exactly what our comfort zones are and challenges some of our own beliefs and values. One of the things I hate most about my new disability is having to use the walker. I hate the way it makes me feel. I feel like it screams to the world this woman is weak and disabled. Ok, so maybe it does. It's actually a fact though, isn't it? The hidden message is that somewhere inside me it makes me feel like less of a person. Wait! Am I saying that I think people with disabilities are less valuable than able bodied people? Absolutely not! I would be the first to stand up and defend them and state their value. I just feel like I am a lesser person.
Therein lies the rub. The double standard that I must emotionally accept and grapple with and yet hate. To say that this disease make me a lesser person and doesn't affect others that way, implies that my life is more valuable than theirs! NO! I don't believe that to be true at all! And yet, there it is; that uncomfortable double standard that makes me cranky and uncomfortable. I hate being disabled. I hate what I have lost. I liked the strong and active person I used to be. I liked waking fast. I liked being strong. I was proud of all the things I could do as a woman. I miss who I used to be.
One of the most challenging things about this whole disease is not the physical battle I have had to wage, it's the emotional one. The one that makes you ask yourself what is it that makes a person who they are? Is it that jobs they perform? The tasks the can do? Their physical feats? To be sure, they are all part of the equation. I was a teacher. I was strong. I was a doer. Now I need help. I am slow. I no longer have my job as my identity.
So what does that leave us with? That is the question I have had to come to grips with as I try to figure out who I am and what makes me tick. There was an application I once had to fill out that asked us what three words we would use to describe ourselves. If I recall, my choice was enthusiastic, compassionate and creative. All three of those still exist. They were not lost to TM or MS. Ok, in all fairness, the brain fog does sometimes makes me feel like I have lost IQ points and my enthusiasm has waned as I struggle with day to day life. But overall the qualities I most associate with myself, still remain.
So why do the appearances matter so much to me? What is it that upsets me so much to be seen as I now am? Part of it is the reminder of what I have lost. The reality is that my life has taken a 180 degree turn since this began. The way I spend my time, the activities than I use to do, and the job that I use to perform have all been ripped away from me. That is a sting that does not go away quickly. I cannot act onstage without the ability to walk normally. I cannot dance. I cannot work at my profession. I cannot be the supergirl tomboy tackling difficult jobs on my own. Even reading as a hobby has been impacted. Those are real losses, not easily given up. Using the stupid walker is a reminder of all I have lost. It's a reminder of what I can no longer do. It exposes that vulnerability to the world and says; Hey, this woman can no longer do all she used to do.
It's easier to do around strangers. To them, I am just a disabled woman. They know nothing different. Those are the situations I feel most comfortable. It's when I am in old familiar places with new me that it is the hardest to bear. There is a pain in the eyes of friends as they watch me in my new body. They too grieve for what once was as it impacts friendships and relationships.
There is a quote on the walls of the Project Walk location where I have done much of my PT. The owner's daughter has battled TM as well as other aliments with astounding courage, grace and success and it is her quote. "Face it, Embrace it, Defy it, Conquer it" that fills one of the walls. What I have come to realize is that you really do have to do each if these things. I had only been doing three. I had not embraced it. I tried to hide it, pretend it wasn't there. The reason I didn't want others to see me as disabled was because I didn't want to accept it myself.
I recently walked in a Woman's March in my town. It was something I wanted very much to do. But in order to walk long distances, I have a rather unusual system. I discovered while visiting my brother and my 2 year old niece that a jogging stroller is a perfect outdoor walker. It turns on a dime and makes me feel more normal, besides giving me the stability to walk faster with a more normal stride. Ok, perhaps I look more normal when there is actually a kid in it, or at least nearby. As a 53 year old woman walking with two dogs, I might perhaps look a little crazy. So, I was left with the choice of looking a bit crazy or rocking the disability. After serious consideration (I know it shouldn't have been that hard to choose, but it was) I opted for rocking the disability. I created a sign that says "The stroller is my WALKER. It carries my TM and MS so I can walk with my dogs.
The most amazing thing happened. I felt proud of myself. By embracing my disability, I was now able to conquer it. TM/MS may be a huge part of who I am right now, but it does not define me. I am still strong. I am still feisty. I am still enthusiastic, compassionate and creative. There was a time in my life when I hated being a tall blonde. When I learned to embrace it, those that wanted to tease me about it no longer had control over me. In much the same way, by embracing TM/MS, it no longer has control over me.
So, Publisher's Clearing House, feel free to show up on my doorstep with your cameras. I will gladly come out in jammies and with my cane.
Kristen is a former kindergarten and special education teacher with two wonderful grown children, two precious fur-baby dogs and a mischievous cat. Diagnosed with Transverse Myelitis in September of 2016 and Multiple Sclerosis in December of 2016, and Optic Neuritis in January 2017, life has changed in a big way in a short amount of time. But HOPE springs eternal as she rediscovers and reinvents life along the way.