MS is a Four Letter Word
Last updated: October 2018
“Within 10 years 50% of newly diagnosed patients will suffer some form of disability,” the neurologist informed us. I wasn’t sure if we were being warned or chastised. Was this talk to prevent us from hoping? Or was it a way to give the medical community an out for those of us who did progress rapidly? I heard this lecture at the first MS patient-education seminar I attended after my diagnosis. The attendees were MS patients, caregivers, family, friends and presenters. The word I heard in my head and felt in my body at the time of my diagnosis returned to me now - FEAR.
Fear is a customary attribute of MS. Because there are so many disease unknowns like cause, unpredictability of symptoms and the illusive cure; fear is a common emotion. It is human to fear the unknown. At the time of my diagnosis I was working full-time as a program coordinator for a prestigious Medical school in New Hampshire. I worked with physicians, scientists, health care professionals and patients in the field of Health Care Decision Making. We conducted research on ways to help patients make informed decisions about their health care. This is an important field and I took my responsibilities to facilitate this research seriously. Becoming a patient was not in my plan. I was made of tough New England stock. I did not go to doctors or ask for help often. Self-reliance is one of my core values. I even quoted Ralph Waldo Emerson in my high school graduation speech (many years ago!). I was determined not to let fear take me down.
For three months numbness crept from my feet to my belly button. Unresolved doctor visits and the complete loss of sight in my right eye produced a diagnosis of MS. Enter another four letter word – NUMB. The numbness I experienced in my body seemed to creep into my heart and soul. In my mind I accepted the diagnosis. I did not cry or feel angry. I understood that things happen to people and this was happening to me. What I did not understand was that I was numb. Looking back, I was in ultra-acceptance mode. I knew my life was changed forever but I didn’t really mourn it. I just wanted to move on and be New England Strong. The numbness pervaded my body and psyche and tried to take over.
Still numb and seeing grey in my right eye I was deemed fit for work four months later in the fall of 2005. My whole outlook was to be rational and move on with my life. I didn’t want sympathy, however I did want understanding from those whom I was close to. I needed some leeway. The question is would I give myself that same leeway? I had to ask myself some tough questions.
I like to dwell in the world of solutions rather than that of problems. The answers to those tough questions began to resonate fairly quickly. I was not the same person who worked full-time, commuted 10 hours a week, threw parties for friends, was relied upon by family, completed a Masters Degree while working full-time, read 80 books a year and dabbled in photography, writing and learning Chinese. Something had to give. I had to add some balance in my life or else I would lose myself and my health.
Enter another four-letter word – LOSS. My identity was wrapped up in that person who could deliver. I put myself through college twice. I worked at an Ivy League school where privilege was more often than not a common denominator. My strength came from knowing that I was made of tough stock. Unaccompanied by family or friends my maternal grandmother (Janina) came to America from Poland at the age of eight. She lived a long life caring for herself alone until just shy of 95 years. My fraternal grandmother (Millie) married at 15 and raised 9 children to adulthood. At the ages of six and nine her two sons perished in a fire. She suffered with the pain of that loss throughout her life. There were many other setbacks both financially, personally and emotionally. She always found a way to persevere. I have fond memories of Grammie dancing down the aisle at the grocery store, talking to complete strangers about a recipe and always thinking of her family. She was the epitome of generosity. If someone liked a nick-knack she had or even a shirt she was wearing – she would give it to them. Grammie was the hardest worker you would ever see and one of the kindest hearts that ever existed.
Should I call on that reserve of “tough stock” and try to continue to be the person I thought myself to be? The analytical part of me knew that the best answer was to modify and change how I looked at things from the inside out. I would not pursue another advanced degree or try to rise further within the organizational hierarchy. I wanted to defy the predictions of that neurologist and continue to walk 10 years post-diagnosis. The first step toward achieving this was to acknowledge that there would be loss.
One of the first things to lose was money. I chose to change my work schedule to part-time. I was fortunate to be able to make that choice. My employers were willing to take me any way they could get me. As my immediate supervisor said, “A part-time Darleen is better than a full-time most anyone else.”
Hence, I traded the loss of money and ego (less responsibility at work) for the gain (hmmm another four-letter word) of balance and health. Or to put it another way, minimize the LOSS of health. Both my husband and I believed that reducing stress might also minimize disease activity and/or flare-ups. While none of this is proven it felt like a good first step. Reduce stress, reduce disease activity and prevent future disability. It sounded like a good hypotheses.
This became our mantra. A balanced life will help protect health. While they might not be called losses, there were other compromises. I would have to begin to make choices based on what was right for me and not for others. This may sound selfish but it is practical. Instead of going to a family reunion for three days I would attend for one. The group parties we used to give turned into small intimate dinners for four.
Modifications/compromises like this seemed shocking at first because I was always the one who could be counted on to pitch-in or host events. I am now more apt to say what I need and do what I want. I have learned to embrace that and enjoy its liberating effects. Being born under the zodiac sign of Leo helps. We like to get our way! As my husband says, “Use it!”
Don’t get me wrong, I am not making light of the very real concept of loss. I have felt it deeply. However, what I have tried to do is reverse it. How can I use what I feel is a necessary evil to my advantage. How can loss be turned into GAIN. What do I gain by modifying my behaviors and changing my outlook? For one thing I have learned to live in the present. While I am by nature a planner, I have learned to let go of some of my expectations and planning. This too has been liberating. It allows for unexpected pleasures to occur and for less disappointment if they do not.
In terms of work I did “semi-retire” in 2012. This was not out of necessity but out of desire. Financially we were able to relinquish my part-time income which allowed me to pursue other interests. What I gain from this is that rare four-letter word – TIME. I am fortunate to have time to explore other opportunities and interests at a deeper level.
I continue to try and build mental and physical strength and endurance through exercise. I wish I could say I am running marathons but this is not the case. I have developed more muscle tone– hooray! I have also increased my walking to a minimum of 45 minutes a day, and some days exceeding 60 minutes or 10,000 steps. With my friend the iPod I walk and sing as I make my way through town. How liberating is that!
Another hobby I have gained is watercolor painting. I began taking lessons this June and plan to continue for the foreseeable future. As with photography, learning painting allows me to see things in a different light. I can use another part of my brain and express myself from the inside out. As always reading and continued learning are constant companions. What I have tried to achieve as I move past the ten year anniversary of my diagnosis is a kind of balance that gives me that last and most important four letter word – HOPE.
Hope is that intangible thing that keeps us going. It consists of fundamentals that exist deeply in the heart and soul of each of us. For some it might consist of deep religious faith and for others it is belief in our inner strength. Nothing is more life affirming to me than smelling the ocean air or taking a photo of a dragonfly on a fall flower. Time ceases in those moments. As Emily Dickinson reminds us, "Hope is the thing with feathers that perches in the soul - and sings the tunes without the words - and never stops at all." My hope is that all of us with MS can find the balance that allows us to continue to hope. It might be a bird song coming through the window in the morning or a game of checkers with a grandchild. If we can all find that thing that perches in our soul, we too will never stop at all.
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