A diagnosis of Multiple Sclerosis is a challenge, but not a death sentence. With the right attitude, a full and active life is probable, not just possible.
Multiple Sclerosis, or MS, is a chronic neurological disorder that targets the brain and spinal cord, resulting in the loss or diminishment of certain body function and physical abilities. (p.42, Understanding Multiple Sclerosis. Biogen, Inc.: United States. c.2000.) In MS, inflammation in the central nervous system causes damage to nerve coverings. This impedes messages sent from the brain to other areas of the body by reducing the speed with which they travel along the nerves. Ultimately, this disturbance in communication causes the symptoms associated with the disorder. (p.9, Understanding Multiple Sclerosis.)
When most people hear the term "MS," they picture a person with significant disability, perhaps utilizing a wheelchair or cane for mobility. Certainly, this is one face of the disease. However, the vast majority of those living with MS are able to lead, active, normal lives. This is due, in part, to the individualized nature of the illness. It appears in a variety of ways, with symptoms that come and go. Periods of remission can alternate with periods of exacerbation. This ebb and flow allows for a "normal" life during the good days, and for proactive self care complemented with medical intervention during the flares.
Living with MS has its own set of challenges, and these cannot be denied, nor minimized. However, the key to living well with MS is awareness - both of the potential difficulties and the the opportunities that lie ahead.
Initially, one must become aware of the very real obstacles that MS can raise in the lives it touches. Physical symptoms, emotional issues, and spiritual questions can be exhausting, even on the best of days. A wide range of symptoms, ranging from numbness and tingling in various parts of the body to fatigue, muscle weakness, loss of balance, and blurred vision can make day to day living quite difficult during flares. Issues of anger, grief, embarassment, and vulnerability must be confronted with honesty and great sensitivity. Living with the uncertainty of the disease can raise questions like, "Why is God doing this to me," or, "Am I being punished?" These feelings and questions are a normal part of coming to terms with a chronic illness.
One must also become aware of the opportunities hidden on the MS pathway. "Opportunities," one might ask, "What opportunities?!" MS prompts those living with the disease to "take care of the basics," to listen to their body, to communicate openly, and to take risks that may have been put off for an unspecified future time.
"Taking care of the basics" can be a daunting first step, but it has a high payoff - peace of mind. Finding about insurance coverage, short and long-term disability benefits through an employer,
caregiving resources, and family concerns before serious disability occurs can help lay to rest nagging fears. Gathering this information is also a tangible, proactive task that can make the first numbing days and months after diagnosis seem less out of control.
Listening to one's body is crucial with any illness, but it is especially important with MS. Since symptoms come and go, and may vary from one flare up to the next, it is necessary to have a sense of body awareness. This can help distinguish a new symptom from an old one, or signal an underlying health condition that is making itself known. Body awareness is also important in dealing with matters of fatigue, one of the most common and debilitating symptoms of the disorder. Being attentive to energy highs and lows is key for planning daily activities. Minimizing energy drains contributes to both physical wellness and mental clarity.
Open communication, with one's inner self, family, and friends helps deal with fear and provides an outlet for the sadness, anger, and resentment that occurs as denial about illness breaks open. Personal journalling, art therapy, taking time out for individual pursuits, and allowing for the expression of a wide range of emotion helps lay the foundation for a climate of safety and healing.
Finally, a willingness to take risks can be another opportunity provided by MS. Determine what matters most, refine goals to reflect priorities of the heart, and know that you won't break. Have you wanted to take that watercolor class, but haven't because you didn't have the time? What time wasters can you eliminate so that you can work that class into your schedule? Have you been meaning to start a regular exercise program, but wondered if doing so would cause flare-ups of the disease? Start slowly, work with a trainer or physical therapist, and include both strength and aerobic training. Don't be afraid to push yourself
a little bit. You are much stronger than you give yourself credit for!
Multiple sclerosis is a challenge, but it is not a sentence for a miserable life. With honesty, compassion, humor, support, and proactive self-care, it is a condition that can be actively managed - another journey on life's winding path.
For further information, the following organizations provide invaluable resources:
1. National MS Society
733 Third Avenue
New York, NY 10017
(800) FIGHT-MS
2. Consortium of Multiple Sclerosis Centers
c/o Gimble MS Center
Holy Name Hospital
718 Teaneck Road
Teaneck, NJ 07666
(201) 837-0727
3. International MS Support Foundation
