"Snow and Multiple Sclerosis"
By: Alexander White M.D., M.S.
We came to Boston on a hot day in June 1987. My wife had reluctantly agreed to move to the US for two years only, not a day more, to indulge my craving for some foreign medical training - then we were headed back home to Ireland to live happily ever after. Life, of course, had different plans for us. My wife fell in love with Boston, got herself a cool job and our son became a Red Sox fan in elementary school. In 1996, when our daughter arrived, we knew we were not going anywhere.
So, here we are in Boston in 2015. We consider ourselves privileged to live in the greatest American city.
So, what’s with “Snow and Multiple Sclerosis”?
Ireland never gets a lot of snow. The mild climate relates to the North Atlantic drift which keeps Ireland from freezing in the winter. I do remember two distinct snowfalls in my twenty nine years in Dublin. Once the snow arrived, life in the city ground to a halt. The schools closed, the buses stopped running and the army was called in to shovel sand onto the main roads. The side streets and footpaths (sorry, sidewalks) were ignored and everyone complained. The pubs, as always, did just fine.
Snow, on the other hand, is a regular winter visitor to Boston. We quickly learned that it has to be a really bad blizzard to bring Boston to its knees. The infamous blizzard of ’78 seems to hang in the air over Boston like some ancient sword of Damocles and always comes up in conversation. We learned about snow shovels and the need to shovel the sidewalk outside your home. We cleaned the snow off the roof of the car after being blinded a few times when it all slid forward when braking on the Mass Pike. We learned the downside of hiring someone to shovel and plough your driveway (it’s expensive and they show up too late to help you get out of the driveway to get to work) and finally figured out that a powerful snow blower is worth the expense.
We eventually slept through the reassuring scraping and rumbling of the snow ploughs at night as they clear the streets for the morning commute. Within a few years we had adapted to the annual New England meteorological drama and it became part of our new life in Boston. We were able to reassure anxious relatives who called us on the phone that all was well, despite the dramatic scenes of polar desolation in Boston that would show up on the 6 o’clock evening news in Dublin.
What has any of this got to do with Multiple Sclerosis ( MS)? MS is that enigmatic neurological disease that hits young people in the prime of life. Just when my wife was hitting her mental and physical stride in her late 20s, raising a son, working full time , BAM…….. MS appeared. We were still in Ireland when she had her first attack, but like the Irish snow, it did not last. That first attack came at a tricky time for us. Our son had just arrived on the scene and we were planning the move to Boston.
“Don’t go” our parents pleaded. “ Stay here in Dublin. It will be easier” .
We went anyway because both of us are pigheaded and believed we could handle anything. Not bad character traits to have as things turned out. At eight months of age, our son had no input into the decision. Our new daughter in law is happy he made the trip!
Like the snow storms in New England, the MS attacks my wife experienced were much more severe compared to the earlier mild event in Ireland. I watched the strain on her face and also sensed a new strain on our family life as she lurched from attack to attack. We had entered the frightening world of chronic unpredictable neurological disease that included new hopeful drugs that she injected daily, rounds of chemotherapy that pushed her into premature menopause but controlled her disease for many years, ambulance rides to emergency rooms followed by stays in Boston hospitals and long stays in rehab. We had to learn how to deal with the blasts of MS while at the same time working, raising two children and trying to stay sane, miles from all family support.
Like dealing with the weather we learned, as a family, to cope with the MS. As a husband and father I had a lot to learn. Dealing with MS is like going through the five stages of grief in fast forward. Its hard to deny what is staring you in the face. Anger was very real for both of us. This new life was not what we had planned – we were supposed to be living happily ever after, not figuring out whether my wife could work, whether we could or should have more children, whether I should quit my academic job for a better paid (and much needed) different job to deal with the financial impact of the MS blizzard that was raging in our home. I was angry with myself for being angry at my wife who was angry at me for being ridiculously angry with her because she had MS!
There is not much bargaining to be done with MS. It just kept throwing us one neurological hand grenade after another, like some Machiavellian pitcher who knows and anticipates your every move and will strike you out, no matter what.
Depression for both of us was very real. My wife got great help and finally wrestled that devious monster to the ground and into submission. I struggled at work and at home with a toxic combination of anger and depression and finally with the help of family, great friends and supportive work colleagues emerged to a place of acceptance, a few years behind my wife. We have developed a few good habits, habit being a great friend to every human who has to deal with life. I am a better, but still mediocre, cook, I can pinch hit as somewhat grumpy care giver, I know when not to react, I make a mean cup of tea for my wife every morning and can prepare breakfast, read email and check the news on my iPad at almost the same time. I can get all the medications set up for the week in their little boxes in about 15 minutes. I am a master at running the every lengthening morning and the evening checklists. Thank God for checklists. I am a self confessed workaholic in recovery, who is learning to say “no” at work to things that will negatively impact the new life we have rebuilt.
Learning to cope with MS took a lot longer than learning to cope with snow. It remains a challenge , even after fifteen years of “training”. Now, we are much better equipped to deal with the intermittent neurological drama that MS sends our way. Marcus Aurelius, one of the Roman Stoic philosophers, talks about learning to win your freedom from life’s problems with patience, honesty and humility. We need to learn how to find a “safe anchorage” in our mind whenever the storm of life is raging all around. You must find a way to replenish your mind, your inner strength and your marriage by having a perpetual clear spring that can clean itself of all the mud and troubles that life will send your way. Mr. Aurelius was a very smart man , he is well worth a read, as his wisdom still resonates in 2015.
We have emerged from the MS jungle to a place in life that is better. The vagaries of the New England weather are just part of our life now. We eat dinner by the fire while the blizzard rages outside and I have fun with the snow blower the next day. Our two children, our daughter in law, along with family and friends both here and across the Atlantic pitch in and help when they can. Like the snow, a blast of MS will rattle our household from time to time but we are tougher now. We are lucky to be surrounded by a long list of New Englanders who help us manage the MS monster. Wonderful neighbors, doctors, home health aids, carpenters, plumbers, electricians, folk who adapt and maintain vans for wheelchairs and home care companies. Occupational therapists to figure imaginative ways to solve problems, physical therapists who maintain muscle function, nurses, psychotherapists, UPS delivery truck drivers, helpful lawyers, understanding financial advisors, humane bosses who mentor and guide…the list goes on.
The white plaques of MS are a snow storm on my wife’s MRI. We can handle it, no matter what comes.
Together.
