“But You Look So Good!”
Marcia Blake Talks About Disability

I was thinking this morning about MS and how little it's understood —both by otherwise-knowledgeable researchers and physicians and by the public at large. That made me think in turn about my own ability to educate at least the people I know, and then I also began to think
about other diseases, injuries, and conditions — both physical and mental — that are not well understood by those who don't suffer from them. There are a number of folks at St Bede's who have injuries or illnesses that have had a significant impact on their lives, and I would like to learn from them. Perhaps understanding the challenges our brothers and sisters face
might help us to grow even closer in a loving, compassionate, and
active faith community. To get the ball rolling, here is my story:

“But you look so good!” That's often the first thing those of us who have multiple sclerosis hear from our friends when we tell them of our diagnosis. The enormous dissonance between what we hear about our appearance and how we really feel is one of the few constants in a disease whose chief common characteristic is its very unpredictability.

MS is a debilitating disease that affects the central nervous system—the brain, spinal cord, and optic nerves. Doctors and researchers think it is probably an autoimmune disease, which means that your immune system attacks part of your body as if it's a foreign substance.

In MS, the body wrongly directs antibodies and white blood cells against proteins in the myelin sheath that surrounds nerves in the brain and spinal cord. This causes inflammation and injury to the sheath and ultimately to the nerves that it surrounds, which results in multiple areas of scarring (sclerosis). When myelin or the nerve fiber is destroyed or damaged, the ability of the nerves to conduct electrical impulses to and from the brain is slowed or blocked, and this produces the various symptoms of MS.

Symptoms of MS are unpredictable and vary from person to person—and from time to time in the same person. They may include heat and temperature sensitivity; bladder and/or bowel dysfunction; dizziness, vertigo, and weakness; difficulty walking and balance or coordination problems; abnormal sensations such as numbness or “pins and needles”; pain; spasticity and/or tremors; depression; changes in cognitive function, including problems with memory, attention, and problem-solving; speech and swallowing disorders; vision problems, which may include blurring or double vision or partial or complete loss of vision; hearing loss; sexual dysfunction; paralysis; and even seizures.

At one time or another, I've had most of these symptoms; currently, I suffer from the first nine in that list. In addition, one symptom that afflicts almost all individuals with MS is fatigue, and that is the symptom that I have found most frustrating. It is hard to explain to outsiders. MS fatigue is nothing like being “tired”; rather, it is a pervasive, overwhelming, bone-deep physical lassitude that makes the slightest effort a challenge which no strength of will can overcome. It affects everything in my daily life, and has even changed my perception of who I am.

(It is also common for people who have one autoimmune disorder to have others, and I have two: Crohn's disease, which is a chronic, debilitating illness of the gastrointestinal system, and vitiligo, a benign disorder in which some areas of the skin's natural pigmentation is lost.)

Because many of the symptoms of MS are invisible, some people assume that I don't really have a disease. Family members, friends, employers, and even doctors may doubt the validity of invisible symptoms. This seriously undermines my confidence and relationships, and can discourage me from seeking help for problems. Like others with MS, I also live with other things that people can't see: feelings of anger, uncertainty, frustration, and fear. People with invisible symptoms must constantly adjust to the differences between how they feel “inside” and how the world reacts to us when we “look so good.”

There is still no cure for MS. There are various strategies available to modify the disease course, treat exacerbations, manage symptoms, and improve function and safety. In combination, these treatments can, to some extent, improve the quality of life for people who have the disease.

Getting around in Santa Fe is difficult for me, especially during the periods when I must use my wheelchair. Since I no longer drive, even getting around to complete the basic errands and tasks that sustain life is a challenge—as is finding the energy and coordination to do them. I must depend on Santa Fe Rides for transportation, which is expensive on a tightly restricted budget and often inconvenient. Many stores and buildings that claim “handicapped access” actually are not disabled-friendly at all: They may have automatic doors, but their aisles are too narrow for me to negotiate, or there are obstacles at every turn, or objects are placed out of my reach or are too heavy for me to lift. Crowds are a threat to me, too, as children—and even some adults!—have occasionally kicked a crutch out from under me.

I miss the work I used to do and the contributions I used to make to my communities, and that has diminished my sense of self-worth. I often have to cancel my attendance at or participation in long-planned events and outings, and that increases the isolation that comes with chronic illness. Because I can't function independently outside my home (and am slowly losing my ability to remain independent even there), I often feel like a burden rather than like a friend or a useful citizen.

Please don't be afraid to offer help. It's still difficult for me to ask for assistance, and I do not take offense when someone holds a door, or picks up something I've dropped. If I tell you that I'm tired, please don't tell me that you had a big night last night, too. And when you see me walking like a drunk—even with my assistive devices—just offer a smile and a steadying hand; it's not alcohol or a character flaw, it's MS!

Marcia Blake

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© 2006 St. Bede’s Episcopal Church, Santa Fe, New Mexico