Living the Dream-ish

I am disabled. There, I said it.


I am not unable. That is what I believe.

You see the thing is, today is World MS Day. There are 2.5 million people like me, and millions more people like me who battle something different. So we’re all sort of in the thing called life together.

Someone gave me a book recently that hit a certain chord. And it was given with nothing but the purest of thoughtful intentions. Maybe it was the title of the book, I do not know, but I was really turned off by the whole idea. The title of the book was something along the lines of I Didn’t Sign Up For This. DUH. None of us sign up for “this”. I kind of rolled my eyes and flipped through the pages skimming the words and it was exactly what I thought it was. A coping book. Coping. The sheer sound, letters, whatever of the word is like nails on a chalkboard for me. Much like the word suffering. I do want to give some more depth to these two words here, but I also want to move past them. I feel like the tone that comes along with both has a negative ring and I feel both are reactionary. Like maybe it is a constant state of hurting. I like pro-action. I prefer to replace both of these words with one much more simple: living. I am living with MS and I am proud of it.

Psychologically we all go through the stages of grieving, coping, suffering to get us through. And at some point, we hopefully turn it all around to reach a state of living. Healthy, unhealthy, whatever label you want to give yourself, comes with ups and downs. Wins and losses. Triumphs and defeats. The low points are never fair. And I saw a wonderful reminder of this yesterday on Instagram: forget the mistake, remember the lesson. Social media has such a wonderful power in that way but you have to believe the words you read as it relates to you. Let go of the BS, the one sided lives that you see other people living. It is not your living. Your happiness is just that, it is unique to you. Embrace the happiness you see, and more importantly, be the love you wish to receive. I don’t want to get into the whole social media portrayal of positivity vs. negativity thing. We see the highlight reel, the glam. We do not see the world outside of that square Instagram frame. None of us see the other side very often. The “suffering”. Who wants to anyway? And if you do catch a glimpse of the other side, as we become sick or experience low points in our lives that we share, respond in love. You are living. In the MS community we do share the ups and the downs but often the downs are accompanied with the glorious hope of what’s next. The rainbow after the storm. We can relate with each other – the infusions, the falls, the injuries, the fatigue, our haywire brains. We are living through this together.

There are many times when I feel frustration welling up inside of me. Like I want to burst into tears because this just sucks. Sometimes I time myself to see how long it takes me to get from my bedroom upstairs down to the kitchen. It takes approximately 7 – 8 minutes if you are wondering. A lot of other stuff can be accomplished in that 7 – 8 minutes that is just not happening, at least the way I see it. Sometimes my husband makes two and three trips up and down the stairs while I am making my one climb up. Lift the right leg, switch arms, hold on to the banister, shift weight, lift the left leg. Repeat fourteen times. Fourteen. This is not suffering. It is not coping. It is just doing. It is real life, and it is my living reality. What else is there? Nothing. So to cry about it serves no purpose. The slow traveling and decline in my mobility is the gray area of my life. I am traveling from living one moment to living another. The way I think about it is I literally move slow enough to smell all the roses along the way.

I cannot dismiss the importance of coping. When your world is shattered to its core, coping steps you through when you are utterly blind. When the light is so dim and the tunnel is long, employing coping techniques protects you from becoming shattered yourself. I cannot downplay this.  Coping is a positive, constructive strategy to just deal. It serves as a distraction, an emotional release and stress-reduction. Coping can even give you self-control when everything else is spinning. Once you have pulled yourself out you are enabled to move on. I have moved on, a long time ago. So something about seeing that book I mentioned just triggered me back to the low days where I do not wish to ever go.

In Man’s Search for Meaning Viktor Frankl  hits the bullseye in defining suffering. He says, “If there is meaning in life at all, then there must be meaning in suffering.” I was in a salon recently and my extremely awkward way of getting around, getting on and off the massage table, in and out of the pedicure chairs is also visually just as I mentioned…extremely awkward. I am tall and me having to man handle my long limbs is far from graceful. So the salon girl asked me if I would ever heal. Hm. Great question. She went on to tell me about how she was young girl living in Vietnam and she could not walk for several months at the age of 13. Her joints had become very swollen and she was experiencing a tremendous amount of pain. Under a communist regime, there was no regulation for medical care so you could never know what type of training or education a doctor had. And I am pretty sure she used the word clowns to describe them. Her faith was a zero, but she wasn’t hopeless. There was no despair in her story. Pain, yes. But not despair. She remembers being prescribed an antibiotic, but could not trust for sure that is what it was. She knew that the only way she was truly going to live through this was to take responsibility for herself. “The last of one’s freedoms is to choose one’s attitude in any given circumstance.” Her family was very poor and she was one of twelve children. The concern of the family was focused on feeding everyone, not her medical troubles. They farmed and harvested their own food to survive. There was no money, or even extra time, to help her. She had to help herself and she dedicated her days to trying to move through the pain and get back on her feet. She never knew what her ailment was as she was never properly diagnosed. While I was listening to her recount her story I was blown away by her remarkable resolve to push through. Her condition could have been terminal yet it didn’t matter. Her determination was in total control even in the face of the unknown. Since that time, she told me she has had a few similar attacks but that each one was less painful and by the time she sought proper medical care here in the United States, none of the testing turned up with anything definitive. I was fascinated by her story. She understood my struggle and I understood hers. She hit a place of vulnerability within me that reminded me that each of us bears the weight of our world. “In some way, suffering ceases to be suffering at the moment it finds a meaning, such as the meaning of a sacrifice.” Life doesn’t have to feel that extreme in each moment. It is the subtleties that are beautiful, and the wide, abrupt swings that are jarring. I often wish for plateaus where things just go “normally” for periods of time. As if I am resistant to dealing with any more than that. And when I am rendered back into the moment, I wonder what the definition of “normal” is? Is there such a thing? I think what I really mean is achieving a plateau of calm. Calm. For just awhile. I will leave the notion of suffering with this final quote by Viktor Frankl, “when we are no longer able to change a situation, we are challenged to change ourselves.”

I dream at night that although I can’t walk, I seem to be able to run. So in my dreams I just run. Sometimes I can walk normally, and even in high heels. Wouldn’t that be awesome! Then I wake up and smile slightly with same thought each day when the sunshine hits my eyes and reality slaps me in the face. Nope, still can’t move my legs. Oh well. That part is certainly not the dream I was hoping for. It is still my life and I am still living and I still have a lot to be grateful for. You might not think my life is a dream and I may not think your life is a dream. My life is my dream-ish.  My dream keeps me going, even if my legs can’t keep up. I have to constantly remind myself of this. I would give a lot to tie up my running shoes and hit the road, take the kids hiking at a local park, even play catch with them in the backyard. I guess we all wish for things we do not have. And that is OK, wishing opens us up for other new ideas that we can do.

I often hint at my desire to cry. Sometimes I do, sometimes I don’t. I mention it frequently in blogging because for me it serves as the breaking point between pushing through with a smile or giving up in an ugly heap of tears. It is a signal that I need to change. That I need to trust in my feelings and be gentle with myself. Even when frustration and self-doubt sit at my feet waiting for me to break. It is just a reaction. My daughter was so incredibly tired the other evening, on the verge of own her breaking point when she just blurted out, “I know I am tired, and I am trying to keep it together, but I am so delicate.” She is seven. Seven years old. I try very hard to pay attention to her wisdom.

Today is World MS Day. I am no longer coping. I am certainly not suffering. I do not wish to be labeled any of these things out loud. I am living. I am living my dream-ish. “Our greatest freedom is the freedom to choose our attitude.” -Viktor Frankl



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