Reflective Calm: Finding Peace Amid Progression
I have been contemplative these last few days, lost in thought regarding the state of the MS. I am not sad or upset, simply in observation mode. Reaching for what may have precipitated this gentle melancholy, I realize I am on the precipice of my 49th year.
While MS continues to challenge every aspect of my being, rarely do I see the progressive nature of my disease in the minutiae of day-to-day life. Only upon annual reflection does it affect and somewhat startle me, as if I forget the progressive proclivity of my MS.
My saving grace has always been taking my diagnosis day by day; the tests, their results, the treatments as well as the fallout. I can take any given day and create meaning from the moments, for good or bad there are no more than 24 hours to digest. A day does not scare or inhibit my hopeful optimism as tomorrow there begins another. A day I can seemingly manage.
A year is altogether different, especially in hindsight.
By default, physical change has become my litmus in quantifying a year. A sum of its parts, a year overwhelms my ability to compartmentalize. Lost is the effortless ability to navigate the day as I come face to face with the reality of progression, and I am at once humbled. I am not angry nor upset, just quiet and mildly wistful. I often wonder why this affects me, as I can clearly comprehend the progressive nature of my MS. In my day-to-day life, I believe faith and hopeful optimism overshadow logic and literally save me from myself.
Hope is not autonomous of fear, and we can hold both. Hope allows me the ability to see beyond the MS and its manifestation in my mind and body. Hope allows faith to flourish and with that comes a peaceful contentedness amid affliction. I credit my increased acceptance to my faith as I become increasingly more adept at relinquishing the perceived control I never even had.
Where agitation and frustration once dominated there is now relative calm.
Recently, a friend asked if my chemotherapy treatments were working. It is hard to know what to say as the operational definition of “working” varies. The simplest answer would be no, as progression continues despite continued infusions. However, simplicity and MS are not mutually inclusive, so I am hesitant to answer so succinctly. There lies so much ambiguity, and much I do not know; would I progress faster without treatment? I choose to believe it is helping, as I see zero benefits in the alternative. I am choosing hope and accepting the status quo.
I thrive on delineation and my Type A self becomes anxious amid obscurity; what a paradox that I acquiesce when up against the most enigmatic aspect of my life. I have found that this is the only way to survive and thrive in the face of progressive MS as agitation, anger, frustration, and fear are self-fulfilling prophecies. I choose to multiply hope when in despair, faith when lost, and joy amid tears. I choose calm.
As I prepare for my 49th spin around the sun, I marvel at my age. I once thought 49 to be archaic yet now I find it to be just a beginning. Every day is a new beginning to a story unwritten, and only I hold the pen. May I write my name on each and every page and always choose to make my mark.
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Darrell Crane
High Jennifer, I really enjoy your writing. How long have you lived with MS and what stage are you currently at? I was diagnosed in '82 at the age of 30. I am at the secondary progressive stage. At least, that's what the doctor says. I think my last "flare-up was 2003. I am not taking any MS drugs! I left the work force and stopped driving in '95. All in all, life is pretty good with my wife, a retired physical therapist (who saw my ms way before the "official" diagnosis!
Heather Lynn
Hi Jennifer and Darrell!
Thank for sharing! Jennifer, please forgive my ignorance as I ask you what you are having chemotherapy treatments for. Is this an MS treatment I haven't previously heard about, or do you also suffer from some form of cancer?
I was diagnosed with MS when I was 27 and have recently embarked on my 54th spin around the sun! No longer RR, been SP for about the last 15 or so years! It's been slow but I can still see the progression year over year!
Kara
One of the treatments for MS is rituxan which is actually chemotherapy. You receive it through an IV at the chemotherapy center. It is suppose to slow the progression of the disease.
Darrell Crane
Hey Heather, sounds like you and I are on the same boat! I wondered the same thing regarding the chemo treatment.
Jenn Powell
Hi Heather,
Thanks so much for asking as that’s a common curiosity.
After trying Copaxone then reaching my max afyer 18 Tysabri (and moving into Secondary Progressive) it was brought to me that Rituxan (commonly used for Leukemia, RA and Non-Hodgkins Lymphoma) could help my MS. It works to eliminate the B cells in hopes they regenerate without mutation.
I do not have cancer.
Happy 54th to you! Wishing you an abundance of health and happiness.
Jenn
Jenn Powell
Hi Darrell,
Thank you for the kind words, I appreciate your taking the time to read and write.
I have secondary progressive since being diagnosed with RR in 2010.
You sound like you’re in good hands and with no relapse since then; wow!
Wishing you continued wellness.
Jenn