MULTIPLE SCLEROSIS: One Person's Story

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What mysteries about your disability have you resolved by looking back on your life?

Name: Deneen Babin
E-mail address: DEBabin@ameritech.net
Date: 09 Apr 1999
Time: 13:20:10
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Story

Multiple sclerosis (MS) is a chronic disease of the central nervous system (CNS) which often strikes in the prime years of a young adult’s life. The disease can take many forms from benign, nearly silent presentation, to the most debilitating progressive course, with symptoms ranging from slight blurring of vision to complete paralysis. Compounding physical disabilities is the added burden of a highly unpredictable disease process. The mental pressures can be at least, if not more so, challenging than the physical demands of MS.

My personal story begins with a confirmed MS diagnosis in August, 1994, at age thirty. It startles me to remember the date and realize that this was just over four years ago. The changes in my life have been so great and widespread that I struggle to identify areas which have remained unaffected. When I stop to take a breath and reflect on the last four years, I realize that I’ve had to examine, and often redefine, myself in physical, emotional, financial, professional and spiritual regards. This work in process has been overwhelming at times. But as I continue on, I’m realizing many positive changes which I doubt I would have reached had it not been for facing a chronic illness.

One of the many difficulties with multiple sclerosis is simply reaching the diagnosis. My personal MS story seems atypical in that a confirmed diagnosis was reached just days after my first visit to a neurologist. The difficulty I faced was in being directed to the appropriate specialist for my situation. Leg problems had persisted for approximately a year and a half before seeing a neurologist. My first MS symptom appeared as the dragging of my left leg which interrupted my routine jogging. Because of the leg drag while running I was nearly tripping on intermittent strides. I made adjustments in my exercise routine by eliminating jogging temporarily, so I had hoped, and substituting more aerobics. My balance and coordination, however, were not flowing as smoothly as normal. In retrospect, it is easy for me to see that these occurrences were the first manifestations of the disease process.

An examination by my internist offered no explanation for the peculiar reflexes in my legs, or for the interrupted balance and coordination. I was having no other physical pains or problems, and had an impeccably clean slate regarding medical history. My family history was similarly free of serious health issues. These first MS symptoms, forcing me to discontinue my jogging and aerobics, followed an intense and completely unexpected stress in my personal life. Only in hindsight did this become such a startling and significant connection to me. It took a confirmed MS diagnosis, my own education about the disease process, and knowledge regarding the mind and body connection, for me to clearly understand this piece of my disease puzzle.

While MS research and treatments are moving forward by leaps and bounds, I’ve always struggled with science’s inability to answer some of the most basic questions. Currently, there are some widely accepted ideas regarding MS genetic susceptibility. Yet that does not offer enough to clearly explain the cause of MS. Exposure to some exogenous factor, possibly a virus, appears to also be needed to warrant MS. But the exact nature of such a factor still eludes the scientific community. Identifying a trigger event for the disease process remains another MS mystery. The combination of genetics, an external agent, and a trigger event or events, more than likely differs for each case of the disease. Because I know all of the pieces of my own story, it is blatantly clear, at least to me, that a stress reaction was the igniting force for my MS. My own fight or flight response left me physically vulnerable to the disease process manifesting. This is a painful reality that I must face.

Deepak Chopra’s Journey Into Healing -- Awakening the Wisdom Within You has a passage which I believe profoundly identifies the final piece of the puzzle allowing my disease process to manifest. Deepak writes:

"To live without love, compassion, or any other spiritual value creates a state of such severe imbalance that every cell yearns to correct it. Ultimately, that is what lies behind the onset of disease: the body is sending a message that something lacking in the present — an imbalance existing somewhere — has given rise to highly visible, unarguable, physical symptoms."

An additional struggle I face is to not allow my intense interest in the mindbody connection to bring me undue guilt feelings. While it makes me somewhat uncomfortable, I am certain that Deepak’s words fit my own disease story precisely. My focus in this regard, however, needs to shy away from the negative side that my own reaction to emotional stress allowed my MS to present itself, and instead concentrate on the positive tool that working with mind and body provides me to manage the disease process. I am most excited to find alternative medicine going mainstream, and the medical community finally opening up to the psychological aspects of disease. My personal belief is that this bears significant weight, and potential for disease management, in an autoimmune process such as MS.

The MS process can interrupt a multitude of different bodily functions. In my own case, bladder and bowel function have been severely impacted. Even though leg symptoms were the first presentation of my disease, the MS diagnosis was only reached through a urologist’s findings. I initially battled frequent and repeated bladder infections, then the problem progressed to incontinence. A host of medications were introduced to combat the problem, but unfortunately all to no avail. At this point my urologist ordered a urodynamics test to fully examine the bladder function. This specialized test result revealed "severe detrusor decompensation," and "a possible, motor and sensory deficit" was highlighted.

My next step in the diagnostic chain was to see a neurologist. Spasticity in my legs had increased. Hyper reflexes such as the Babinski test, a recent attack of double vision, along with the urodynamics bladder test results, led my neurologist to order an MRI right away. The MRI, while not definitive, has become the best diagnostic tool available to reach a verdict of MS. My disease was confirmed just three days after my first visit to a neurologist. The diagnosis came only a year and half after the first symptom which was the dragging of my left leg while jogging. In the MS world, this is nearly record speed because of the varied nature of MS symptoms which can wax and wane. These symptoms often appear unrelated, and can cover several years before MS is even suspected.

My disease picture has been atypical from the beginning, particularly because of such severe bladder onset at the time of disease diagnosis. The relief I felt with the news of my MS was, while not completely unique, also more atypical. I can only attempt to explain my reaction by asking you to consider a young, healthy, physically fit adult whose body begins to dramatically change nearly overnight. My running and aerobic interests were abruptly interrupted. It seemed reasonable to simply take some time off from those activities. A snow skiing trip during this rest period resulted in a tear to my anterior cruciate ligament (ACL) in the left knee. I now believe that the balance and coordination problems I had been experiencing in aerobics also were a factor in my skiing accident. I underwent reconstructive knee surgery to repair the ACL. Consequently, I could easily dismiss leg problems over the next year to my being out of a shape, and simply needing more physical therapy and rehab as a result of the knee surgery.

The bladder problems which then followed were physically extreme, a challenge to my urologist, and mentally nearly incomprehensible for me. Such severe incontinence had me fearful to even go to work each day. Anything social took a backseat so as not to risk a possible episode while my urologist and I struggled to bring things under control. When my neurologist was able to put the pieces together and identify MS as the culprit, the sense of relief brought on by a logical explanation for my health problems far outweighed my fear of the MS diagnosis. "Deneen, your symptoms are in no way psychogenic," were the most welcome words that I had heard in quite some time.

It didn’t take me long to pour into the pursuit of MS knowledge. This effort began with learning about an autoimmune disease and understanding MS’s damage to the myelin sheath. The analogy of nerve fibers functioning like an electrical wire, and myelin serving the role of plastic coating insulating the wire, really drove home the point for my understanding this disease. It explained why MS can potentially affect so many different areas. Any function dependent on muscle can be impaired if myelin in the part of the CNS (brain, spinal cord, and/or optic nerve) serving that muscle has been damaged. The myelin coating is what facilitates the transmission of nervous system impulses to the muscle in a timely and efficient manner. Any delay or interruption of this message traffic can show itself in the muscle’s inability to fully perform. In Multiple Sclerosis - The Facts, Bryan Matthews identifies initial stages of MS to most often occur in a female around age thirty. He discusses an MS spinal cord plaque which may present as the dragging of one leg, inability to run, and difficulty on stairs. Acute retention of urine, impaired bowel function, and failure of normal bladder control are all also noted as presentations of MS by Matthews. Putting all this information together brought me answers, and thus eased at least one aspect of the MS emotional burden.

With this basic knowledge of MS, I could now understand how severe bladder incontinence had resulted. My bladder simply did not know when it needed to empty. When weak signals did make it through to the bladder, the muscle was not getting enough charge, so to speak, to completely empty. The result was a constantly filling bladder until an overflow point, without any warning, was reached. Disease diagnosis provided me with a much needed explanation, but unfortunately medications to compensate for such severe bladder impairment were not available. I was taught self-catheterization as a compensatory technique, and this has been my bathroom routine ever since that time.

Isn’t it amazing how resilient human beings are, and what adjustments one can make? While self-cath certainly isn’t my ideal regimen, it is far preferable over the incontinent alternative. It did take me some time to reach this point. The mental weight felt incredibly heavy. How could I adjust my identity away from being a young and healthy professional, to incorporate an almost unthinkable method of the most basic bodily function, and how many more adjustments would I face? Most of the answers that I longed for simply weren’t there, but I learned that I would have to approach this burden as an ongoing process to work through. In time, I’ve accepted the changes, and even come to welcome some of the new routines which can at least make chronic symptoms manageable. I only wish that science had similar compensatory measures for other areas of impairment, particularly walking challenges. We’re just not there quite yet.

I didn’t recognize until sometime later down the MS road that I hadn’t ever spent time with the emotions that the disease brought me. It wasn’t a conscious attempt to escape the feelings. A psychologist I worked with had warned me about over intellectualizing my MS, but I resisted even the suggestion. It was only when I had to leave a promising career on disability and found myself with too much time on my hands, that I had to spend time with the feelings that had been building over recent years. The reality came tumbling down which was crushing, to say the least. My personality leads me to close doors to the outside world and wrestle the feelings alone. I regret the hurt I imposed on family and friends during this time, but I had to be true to myself.

As I worked through this stage, I began to appreciate the disability benefit. I realized that liking the benefit and appreciating it are two different things. When I was ready to move on, I began by thanking the doctors who had helped me to secure disability, for they had each given time, energy and effort to walk me through the process. I felt safe in sharing some of the deepest feelings with them because they fully understand the far reaching implications brought on by MS. Even though the letter I wrote has a somber ring to it, to me it felt like a healthy step forward to articulate that aspect of my disease.

MS has meant a greater than anticipated burden to my relationships, both with family and friends. The disease impacts everyone who is close to me. We all grieve, but just as each of our personalities differs, we work through the feelings in different ways. I probably add a greater burden to my supporters because I am fiercely independent. In addition to adjusting to the physical changes, I face a tremendous challenge to accept my limitations and allow others to help me. While I recognize this shortcoming, my progress is admittedly very slow going. My strength in independence sometimes being an asset, taken to an extreme, at other times proves to be a weakness.

My current focus is primarily in the mental and spiritual arenas. However, I cannot ignore help from the traditional medical community. When new medicines or treatments are presented I typically resist. My approach is to take a step back, question, research, and consider other options, before signing up for this next step. There are always side effects, risks, benefits, costs and insurance matters to weigh. Dr. Chopra’s words, once again, speak the loudest to me. Also from Journey Into Healing, Deepak writes:

"We have a pharmacy inside us that is absolutely exquisite. It makes the right medicine, for the precise time, for the right target organ—with no side effects."

I have declined, or at least challenged, several of my doctor’s offerings. But other times I have come to understand and accept the case she made, and thus gone forward, usually thankfully, with her direction of choice.

Balancing the two sides of this coin, traditional versus alternative, can be especially difficult. The definitive answers, in black and white, are just not there. I see benefits in each camp, so using teachings from both schools, striving to maintain a good balance, believing in the mindbody connection, and trusting spiritual guidance and my own convictions, seems to be serving me quite well. There is incredible talent devoted to the laboratory and scientific study of MS. I find that most exciting. From the other side, Dr. Andrew Weil in Spontaneous Healing makes an argument that strong, pharmaceutical treatments can "unwittingly strengthen the disease process." He justifies this position by discussing the age old principle of homeostasis which may lead the body to overshoot disease function once treatments are completed or withdrawn. Isn’t that a fascinating idea?

Re: Mysteries about Disability

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Date: 19 Feb 2008
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