When You Stumble, Make It Part of the Dance
During the time in the worship service for prayers and concerns, our minister announced that her dear friend had had been diagnosed with Multiple Sclerosis. Being an empath, my heart immediately went out to her friend. I personally know the disruption of MS. I have the disease.
A new study funded by the National MS Society has confirmed that over one million people are living with MS in the United States. This is more than twice the original estimate from a previous study.¹
¹ February 15, 2019, online issue of Neurology®, the medical journal of the American Academy of Neurology.
Multiple sclerosis is an unpredictable and potentially disabling disease of the central nervous system. It interrupts the flow of information within the brain and between the brain and body.
The immune system attacks tissue and cells within the central nervous system, damaging nerve connections and resulting in neurological symptoms. Women are two to three times more likely than men to develop MS. Most people are diagnosed between the ages of 20 and 50.²
Our society has only a vague and generalized awareness of multiple sclerosis. It is an immune disease. The body starts attacking the myelin sheath coating around the nerves.³ This myelin covering is similar to the rubber coating unraveling from the electrical wires in our houses. This, of course, causes shorts or faulty electrical connections. With MS, however, we are talking about the electrical connections between our brain and the neurons that control and stabilize our muscle movements.
³ Myelin is an insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. MedlinePlus Medical Encyclopedia
Typical Symptoms of MS
MS can cause extreme fatigue, impaired vision, problems with balance and walking. It often causes numbness or pain and other sensory changes such as bladder and bowel symptoms, tremors, problems with memory and concentration, mood changes, and more. This is a frightening circumstance. We don’t want our homes to have electrical shorts and plumbing issues. My gosh, we’re talking about our bodies.
Symptoms of MS are unpredictable because they vary from person to person and from time to time in the same individual. For example, one person may experience significant fatigue and episodes of numbness and tingling. Someone else could experience loss of balance and muscle coordination making walking difficult. Another person may experience slurred speech, tremors, stiffness and bladder problems.
These problems may be permanent or may come and go. Major symptoms sometimes disappear completely and the person regains lost function. In severe MS, people have permanent symptoms that might include partial or complete paralysis with difficulties with vision, cognition, speech, and bowel and bladder function.
What causes the symptoms?
MS symptoms occur when our immune system attacks the the protective myelin insulation surrounding the nerve fibers of our central nervous system.³ Scars (or lesions) appear in multiple places within the central nervous system, giving the disease its name. When any part of the myelin sheath (or nerve fiber) is damaged, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted. This damage to the nerve casing produces the variety of symptoms.
MS is difficult to diagnose because the symptoms can come and go. The symptoms are difficult for physicians to interpret so they must take a “wait and see” approach. No single laboratory test is yet available to prove or rule out MS. A magnetic resonance imaging scan (MRI) is a great help in reaching a definitive diagnosis.
A decade ago, I was jogging along with some children at a picnic, kicking a soccer ball with them. Suddenly, in mid stride, I collapsed to the ground. My muscles suddenly just gave out and I was on the ground. A few years later, I fell when slowly walking with my grandchildren. Both of my falls were years apart. I bounced back up. But for years, the cause of these falls remained a mystery. Because of those instances, this picture is my favorite:
Fortunately, there are a variety of medications that help lessen the frequency and severity of MS attacks. The hope is to reduce the accumulation of lesions in the brain and stop or slow the progression of disability.
With MS, you feel as if some mysterious force has magically replaced some of your muscle ligaments with rubber bands. You can’t hold your legs as steadily as you’d like. You gradually come to walk with some jerkiness. Occasionally, you have some buckling in your stride. There is a Star Wars cartoon character named Jar Jar whom I think I am inadvertently mimicking when I walk. I use a cane for longer walks to help with stability.
Some of us have tremors. When I drink a glass of water or hold something with one hand, my hand shakes. Typically I use my other hand to steady the glass. I tell friends at restaurants that my shaking simulates a California earthquake with a 6.0 Richter measurement. I say I am serving the public good as a natural simulator.
We are creatures of habit. We set the tableware in certain ways and put the silverware in the dishwasher the same way each time. We name our computer files, starting with the save date in the YYMMDD format before the more descriptive name. We do this so the file names automatically line up in order by date. We always write thank-you notes, no matter what. We tend to wrap our dental floss on our fingers a certain way because we have found what works best. My gosh, we’ve even figured out a way to trim our toenails so that our weight is supported by the floor. We do this rather than tentatively standing, with our knees and legs awkwardly hovering, as we sit on a chair.
In all the ways we do tasks, we are trying to gain some measure of consistency in our lives. In our own way, each of us has our own list of “best practices” for our myriad of chores. But no matter how regimented and organized we prefer to be, it all gets thrown off by MS. It’s as if we’ve had our batteries replaced by old worn out power cells. We simply can’t do everything we used to do.
The good news is that we don’t die from Multiple Sclerosis. “Lesions” or scars appear on our brain or spine. They show up in the MRI (Magnetic Resonance Imaging) scans that the neurologists perform. We may get tired sooner and end up taking naps. There’s no shame in that. It is just more difficult to work full time. Even then, there shouldn’t be negativity if the person’s MS is a known disability. It’s just a lifestyle change. Maybe, like in kindergarten, we’d be better served to take a nap. Huffington Post employees once were encouraged to do so.
Likely, few of the parishioners hearing of the minister’s friend’s MS diagnosis are aware of the dramatic lifestyle change accompanying the disease. That’s because our MS deficits seem mild. Our disabilities amount to some physical weakness in moving about. It isn’t, fortunately, always so debilitating that you are inhibited from leading a normal life. MS is not a pressing matter where you have to gather your friends and relatives and set your affairs in order.
Everyone who has MS has a relatively unique circumstance. In general, there are three forms of MS.
1.There is “Relapsing-Remitting MS” (RRMS). The symptoms come and later disappear. 85% of people initially receive a diagnosis of RRMS. Relapses, also called attacks or exacerbations, are followed by recovery periods called remission. Relapses can last from days to months and then subside. There can be full or partial recovery with no apparent disease progression between attacks. During remission, symptoms lessen or disappear. Relapsing-Remitting MS is two to three times more common in women than men. Approximately 85% of people begin with this disease pattern.
2. A second type or stage of MS is “Secondary Progressive MS” (SPMS). Close to 115,000 (28%) have SPMS. In Secondary Progressive MS, relapses can become less frequent. Symptoms may become worse as disability progresses. Secondary progressive MS begins initially with a relapsing-remitting course. It later evolves into a more consistently progressive course, with or without relapses.
3. The third form of MS is “Primary Progressive MS” (PPMS). This is a separate form that only affects about 15% of people with MS. This form of MS progressively becomes worse. In PPMS, the disease is characterized by a gradual but steady progression of disability with few or no relapses or remissions. Occasional plateaus and minor improvements may occur.
I apparently have the third type of MS — Primary Progressive MS. Fortunately, the FDA has approved a chemotherapeutic drug named Ocrevus that stops the progression for many patients. It’s not a cure but it does prevent the MS from getting worse. It costs $65,000 a year (gasp) but fortunately, my health insurance is covering it.
MS patients have to live with the reality of their diagnosis. The general public do not see us walking around with electronic billboards on our backs, boldly announcing which form of MS we have. Our MS diagnosis is often uncertain. That is because multiple sclerosis is a complex disease to diagnose. In fact, it takes at least a year or more of trips to numerous neurological specialists to finally obtain a diagnosis. Even then, the initial diagnosis is the neurologist’s best guess at which form of MS we may have. Even a couple of weeks in a row without medical appointments or tests is a treat in the early months.
That said, most people don’t see the many medical appointments dominating our calendar. They only see the small impairments to our stride or balance.
The biggest inconvenience an MS patient has is a lifestyle disruption. These are the habits we have come to associate with “normal” life. Your life has changed.
We get tired more frequently. We can’t walk several miles, even though we may have had decades where we’ve easily hiked five or ten miles at a time.
Because our stamina is considerably diminished, we tend not to work full-time. We take life in smaller pieces. There were periods in my life when I regularly worked 60 to 80 hours per week. If anything, being forced to back off from my relentless type-A behavior achievement treadmill may have saved my life. The number of hours I worked, for years, might have done me in had I continued it. With MS, you can no longer work yourself to death, no matter how bent your aspirations have been in performing, producing, achieving and accomplishing.
My MS has aged me 15 years. It makes me feel frailer and more dependent. There isn’t anything I do in life without pondering my ability to do it. I must calculate if I have the energy it will take to do it. Perhaps, getting MS has been, for me, a giant Zen Buddhist lesson in living in the present. There is simply no place or driving energy to compete and strive for things that I now know are out of reach. But there is a wonderful sense of contentment with what I can realistically accomplish.
Since we are creatures of habit, with MS, my habits have been forced to change. I am unable to do as much as I had done before so I must be creative. This is a good thing. Throughout my life, I’ve used my mind to innovate and invent more efficient methodologies. With MS, I now apply my creativity to smaller daily tasks. Having MS may be causing me to live a more creative life.
Along with MS comes a profound sense of gratitude. My life’s focus is not on what I am unable to do. Now, more than ever, it is about what I am able to accomplish. I don’t take things for granted.
I’m warmly grateful for anything my wife does for me. I see more clearly, then ever, that wherever she stands, it is holy ground — that I am in the presence of the divine. I am also more alive to the presence of the Creator in the acts of kindness of neighbors and friends. Like the image above, my occasional stumbling reminds me of the temporariness of life. When I sense my frailty, it opens my eyes to see more of the dance of life. I now see acts of kindness with more focus. In many ways, I am more fully alive to how each of us is a person of great worth, wonder creativity and joy.
I see more clearly the needs of people I meet. I’m more aware of the loneliness that dominates the inner lives of my everyday acquaintances. There is a profound sadness that many have occupying their souls. With MS, you become awake to how each one of us has needs. We all are frail. Every person’s needs are worthy of our attention. This mindfulness is the rhythm of the dance of life.
In the decade or two that I have left, my expectations are modest. My sights are considerably curtailed. That’s OK. I don’t have to save the world or succeed in comparing myself with others.
Instead, I strive to be fully present and compassionate with the people in front of me. If I can live as if their needs are as important as those of my own, then, I think, I can make a difference. Those are the habits I seek to cultivate in my time ahead.