Atypical Multiple Sclerosis

While waiting at my recent neurologist appointment, a discussion in the waiting room occurred. Several of the people began asking others when their life changed.   Seemed a little odd to me because I don’t know the date when I was diagnosed which is what was meant by ‘life changed’.  It seems that the word ‘change’ has a negative connotation to it. Yes, being diagnosed with MS is not a positive thing. I am painfully aware of that. Wrapping your head around such a significant change can be difficult. There are so many questions and so few answers. Anything that is worthwhile  usually requires hard work to accomplish.  Putting yourself in the best possible position when you have ms does require a great deal of hard work. 

But the whole idea of change is different or I guess has changed for me since being diagnosed with multiple sclerosis. Living in the northeast I watch the seasons pass every year. Seems nature is in a constant state of flux or change. The tress sprout leaves in the spring unfurling their deep greens only to wave about through the summer breeze like flags. By the end of summer their life lived and like a checkered flag in an auto race they wave once last time before turning autumnal colors of red, orange, yellow as the life drains the color from their limbs. Finally falling upon the ground only to turn into fertilized earth giving the trees sustenance once the snows of winter melts.

Nature is constantly changing. I don’t see the trees, or the squirrels, or the bears, or the foxes (you get my drift here) fighting that change. Since being diagnosed with multiple sclerosis I believe that it was my expectation that things should not change that caused my unhappiness, my anger. It is like a chinese finger trap, the more you pull at it the tighter it becomes. If you relax and push inward your fingers are freed. 

Now, hold on a moment. Don’t turn away so quickly or yell so loudly. I am not saying if you just accept ms then all your worries will be gone, or just be happy you have ms. No, no, no, no that is not what I am saying. 

What I am saying though is once I stopped thinking, saying, and believing that ms should not have happened to me. Once I stopped believing that I am a victim of this disease, I became happier, became better able to handle fighting the effects of multiple sclerosis. On my to the grocery store, I bypass a house with a huge field as a back yard. Often I see a three legged dog running around the field. Occasionally, in the afternoons when I drive by this house I see a young girl (6 or 7) playing fetch with that dog. The dog seems pretty happy despite having lost a leg. The dog works harder to run and fetch than any four legged dog I have ever seen.

See, once I said, okay I have ms that is just my reality, I was able to next say okay what do I need to do so that I can be the best for my family. Now, if you have read any part of this blog you will see it took time to be diagnosed and I was pretty down about that. It is not as if I am happy to have ms or happy to hear or see anyone else with this ms. For me, when I stopped expecting my life would be different than it is right now, at this moment, I instantly became happier. I was not so angry, I was not so scared, I was not so tired. 

Of course, that change may bring harder work but at least I am able to work at it. Having ms has taught me so many lessons. Accepting that change happens at every moment, and not fighting against it has helped me greatly. I can put my energy into really battling the symptoms of ms and not battling my mind obsessing about how life should be. I have energy to enjoy the moments with my family.

I am a person who happens to have multiple sclerosis, primary progressive, atypical multiple sclerosis. I have fought my way through dark times to get back to a place where I can be happy. Change is just part of life. Hooray Change!

Sometimes life throws you bittersweet moments. I was privy to one these the other day. Returning home from walking my dog, I told my son I was almost able to maintain the “pirate pace” during my walk. The pirate pace is briskly walking for over 30 minutes OR walking our chocolate lab at a pace and length of time enough to thoroughly tire him out.

My son hugged me, told me how proud he was of me. Wait for it-that was not the moment. Here it is. He then said, “Mom, if I get MS I know I’ll be alright. I mean look at you. With everything the past three years has thrown at you and you are as happy as ever and continue to do new (learn to knit, begin writing) things.”

The sweet part is that I am truly humbled by his words. As a parent it is deeply satisfying and humbling to know that I have actually provided a positive model in such a turbulent time. Many adults do not feel as though they are or would be alright during trying times. 

By now, you can guess the bitter part-“Mom if I get MS”.  Yes, yes I know that MS is not hereditary and that genetics play only a small if any role in MS. I am keenly aware of the percentages as well. However, part of the Atypical MS diagnosis for me is my family. Myself, my two sisters, one of three brothers and a niece all have been diagnosed with MS. One sister is ‘classically’ RRMS as her doc puts it. That leaves myself, one sister, one brother and one niece that are Atypical.

So, when my son said “If I get MS” he really means it. He has watched different members of my family become affected by MS for the past five years. At first it was his aunts, then his mom, then an uncle. When his cousin, who is only a few years older than he, was diagnosed with MS,  it became a possibility for him, too. 

Until he uttered those words-If I get MS-I was hoping he didn’t connect the dots. But as a bright teenager he did. He always loved the connect the dots and most other puzzles as well. Don’t get me wrong, we aren’t waiting vigil for the arrival of symptoms. In our mind it is a big IF and down the road in the distant future. We don’t fret about what ifs. We live our life as if we are free of all disease. We know what can happen for both he and I;  that makes each moment all the more precious to savour.

So, it’s been awhile since I’ve written. I guess I’ve been just living. Enamored with the ease of moving naturally, of walking through a crowd and just being one of them. Not anchored by braces and crutches and spasticity holding me firmly to the earth. I walk through stores, walk through the woods, walk to my seat in a restaurant, walk through the grocery store and no one, NO ONE stares at me wondering ‘what is wrong with her.’

I am just another person living in this world. That is the difference. When you look like everyone one else and move at their speed then you are one of them. Taken at face value as one of them. They cannot tell that something is wrong with me. They cannot tell how hard I fought to get here. They cannot see the pump inside me.

The other day, sitting in the waiting room of my physical therapists office, a man ‘walked in’.  I use the verb walk and immediately you think of long strides, ease of movement, grace, swinging of arms, an almost involuntary muscle movement like a beating heart. Yet this man, in his forties, moved stiffed legged using two canes (not even lofstrand crutches) and each step draining his energy. My goodness, I thought that is how I must’ve looked. I understood this man in a moment. Feeling both grateful and guilty for where I stand now.

Seeing others struggle now, I feel like I must make the most of my well being. I don’t mean going off every day enjoying myself by immersing myself in all the activities I couldn’t do before. I mean helping others. That man, just watching him, made me realize how many other people have helped me. Without them I would not be in the position I am in right now. From my family and friends who wouldn’t let me give up, to doctors who care enough to keep practicing even though they can’t cure you, to past patients who forged new treatments, to strangers with kind words and actions, it is upon their shoulders I rode when I could no longer walk, move forward.

I feel I must make a commitment to help others make their life better so maybe they can enjoy just living too. I would really like to connect with others who have MS or other similar diseases. I know the importance of having supportive individuals helping you through tough times. I feel like  a window of opportunity opened and I must seize it. As my son, who is currently taking Latin, says “Carpe diem, mom, carpe diem!”