It hit like a body blow – fast, hard, and unexpected. In the course of a day, I went from feeling unwell but reasonably happy to deeply depressed. I heard myself begin to apologize for every bit of space I inhabited, for every need, for every way that my life touched the lives of those around me. For the past few weeks I have awakened morning after morning sad, lonely, and insecure. It is as if all the years I spent developing a place for myself in the world and building loving, egalitarian relationships have suddenly melted away and I have reverted to the damaged child I was when I emerged from my difficult childhood. Even as the weight of my life rests on my shoulders, the cause of my sudden, desperate sadness is clear to me: after months of trying different treatments, my breathing problems have persisted, and the pain and fatigue have finally worn me down. For the first time in the months of struggle against this symptom I lost track of the loving care I consistently receive from my family, friends, and doctor and fell into the narcissistic abyss of self-loathing.
Of course, I am not the first person with MS to become deeply depressed. In the 19th century, Jean-Martin Charcot, known as The Father of Neurology, was the first physician to provide a detailed clinical description of the disease we now call MS. He observed patients over their lifetimes and then studied them post-mortem, thus confirming that the source of their symptoms was MS scarring in the brain and spinal cord. His lectures on MS describe an array of symptoms he suggested physicians use to identify MS in their patients. As early as 1870, when referring to a patient he called Mademoiselle V, Charcot identified severe depression as one symptom of her disease. Charcot’s connection of Mademoiselle V’s depression to her disease was supported by the fact that she also suffered from a host of symptoms we now know are common to MS—emotional lability (inexplicable and uncontrollable fits of laughter or tears), double vision, vertigo, paralysis, and spasticity so extreme that she could not stand without the assistance of two aides.
Over a century later, I think of Mademoiselle V and her role in Charcot’s lectures, her pained body moving in ways she could not understand. What, I wonder, was she thinking? Her intellect was probably unaffected by the disease, so she was aware of her body’s slow deterioration and I can’t help but imagine that she felt misery and loneliness when that deterioration intruded on her life day after day. The illustration that appears on the cover of the collection of Charcot’s lectures that contains Mademoiselle V’s story portrays a naked woman, her arm thrown over her head in what appears to be an uncontrollable spasm, and a contorted face full of pain and fear. What Mademoiselle V could not have known is that by the 21st century MS would be considered the most common neurological disease and that according to the National Multiple Sclerosis Society it affects 2.1 million people worldwide. She could not have known that there would be a host of organizations whose work is to support patients, to help fund research, and to provide information to MS sufferers and their caregivers. More than that, she could not have known that one day the Internet would provide people with MS companionship and that we could communicate with others whose experiences are similar to our own and who can sustain us as we struggle to understand the debilitating changes our bodies impose upon us.
As Mademoiselle V stood before those men, her body and emotions out of her control, she also could not have known that even in the 21st century the symptoms she experienced would still be significant impediments to the happiness and comfort of people with MS and that even at this late date there would be no cure for the disease. The paralysis, spasticity, difficulties with speech, vertigo, emotional lability, and depression that were so much a part of her life would still plague people with the disease. While contemporary sufferers certainly have medications that help control MS symptoms, their effectiveness is sometimes hit and miss and more often than not a drug that relieves a symptom like spasticity exacerbates others—like muscle weakness and fatigue. I am deeply moved when I think of Mademoiselle V; I wish I could reach back to her, offer her support and camaraderie, and tell her that her suffering changed my life, that she not only helped give my disease a name but also helped me know that my own depression has a reason, that it makes sense and can be explained. I would be sorry that I would have to tell her that even after all this time MS cannot be cured and that in many cases its progression cannot be halted.
This brings me back to my own recent struggles with depression. Approximately 50% of people with MS will in their lifetimes experience some form of depression, and these depressive episodes can range from short-lived to chronic. There seem to be three main causes of MS depression: stressors like the progression of disability, loss of career and livelihood, changes in familial and/or romantic situations, etc.; demyelination of nerves in the brain that control emotions and emotional expression; and medications used to control symptoms or to help decrease the number of relapses in patients suffering from the relapsing-remitting form of the disease. Of course, many more circumstances faced by people with MS can cause or contribute to depressive symptoms, but these are considered the three most common.
As I say above, depression seems an obvious and even rational response to the daily experience of progressive MS. In my case, the severe spasms in my bronchial tubes and the girdling sensation I described in my last post distract me from most of the activities that are important to me. I awake each day determined to write a blog post, to participate in my online support groups, to answer e-mails, or to engage in the other activities that bring me joy and comfort these days. But day after day I find myself distracted and fatigued by the struggle to breathe against the intense spasms. More often than not, I am quickly reduced to a quiet sadness. Lately, as I have read about Mademoiselle V and pictured her there alone, sad, and in pain before those healthy men I want nothing more than to sit with her, to offer her some companionship, to share with her a song called “I am Willing” (performed by MUSE, Cincinnati’s Women’s Choir)