“I’m 99% sure you have Multiple Sclerosis (MS).”
– 1st Neurologist appointment, June 1984
The First Day
I’ve traveled a long road to overcoming all symptoms of MS. The first leg of the journey began when I was just 19.
The first day was the worst. It was 1984, the summer after my freshman year at college. I was working as a hostess at a seafood restaurant. That June day, I went to work for the lunch shift in the late morning. I noticed that my feet had pins and needles sensations like when you sit on your leg and cut off blood flow and then it floods back all tingly. Only this day, the blood didn’t flow back. No matter how hard I shook my feet, the tingling persisted. In the course of a few hours the tingling crept up my legs.
A few hours later I was sitting with my mom and dad in a neurologist’s office. The doctor did a cursory physical examination and with a spectacular lack of sensitivity pronounced “I’m 99% sure you have Multiple Sclerosis. We’ll have to schedule an NMR (nuclear magnetic resonance – the scary name of the machine that would become rebranded as an MRI – magnetic resonance imaging) to verify, but if I’m right, there’s nothing you can do but go home and wait and see if your symptoms subside.”
Multiple What?! The doctor sent us home with little information and we were left with lots of questions and a bleak outlook. By the time we arrived home, the tingling had crept up my whole body and abruptly ended at my chest. That evening my feet started to go numb and by bedtime the numbness had ascended and enveloped me like a fog. I couldn’t feel anything from the neck down. Not pinches or stubbed toes or even going to the bathroom.
Mom lay by my side in bed that night to comfort me. I remember we both cried. I cried harder when she hugged me because I couldn’t feel it.
Two Months of Uncertainty
For nearly 2 months my body was enshrouded in numbness. It was difficult to walk, not knowing where my limbs were in space. I shuffled like an old woman from my bed to the couch in the living room, grabbing at furniture to steady myself. It was a terrifying time.
My parents were rocks. In the afternoons dad would help me into the hammock on the patio. Since heat is known for making MS symptoms worse, he would hose me down so I could stay cool. Mom shared my emotional ups and downs, played board games with me, and helped with research and planning for the future. We envisioned how I might be able to attend a local university in a wheelchair.
Several good friends visited or called daily. I still treasure the ones who weren’t scared off by the mysterious disease. Some brought books or stayed and watched funny movies with me, and one taught me to knit. A dear friend of my mom’s visited regularly and encouraged me to explore the metaphysics of why I might have attracted the MS.
One book became my guiding light for taking control of my experience: Norman Cousin’s Anatomy of an Illness in which he recounts his personal experience of healing from cancer with laughter. This made perfect sense to me, so we made it a family mission to watch funny things on TV, like Cheers and I Love Lucy.
I started doing healing visualizations too. I imagined white light penetrating down though my head and targeting the “bad” cells that were attacking my own body. In those days my visualizations were a battle of good vs. evil. Every day for about 10 minutes a day as I lay on the couch, I suited up for mental battles with visions of laser beams and every healing intention I could muster and hold. Athletes have used mental imagery for years to rehearse and prepare to win. It is not at all surprising that more research is being done on the beneficial effects of visualization on healing.1The effect of guided imagery on stress and fatigue in patients with thyroid cancer undergoing radioactive iodine therapy; Lee, MH; http://www.ncbi.nlm.nih.gov/pubmed/24369476#
By mid-August, my body started to “wake up.” The numbness retreated in the reverse order that it came on, and then soon after, the tingling diminished too; and s-l-o-w-l-y (“slow“ as in a 2-year long process) they both finally subsided. Phew!
I went back to Vermont for college and began the dance of denial and hiding the fact that there was anything wrong with me.
The Dance of Denial & Hiding the Truth
Dad suggested I not share my MS experience with others. He was afraid I’d be perceived as having some weakness that might cause people to judge or treat me differently. So not only did I hide my MS from others, I also hid the reality of it from myself. I went back to a lifestyle of studying hard, partying hard, eating whatever sugary snacks I felt like, and I didn’t tell anyone but my 2 closest friends at school that I was still tingling and feeling like I was plugged into an electrical outlet 24/7.
This denial lasted throughout college and for the next 6 years. Two weeks after I graduated I joined AT&T Network Systems in New Jersey. My dad continued to urge me not to reveal any health issues, even when my symptoms caused me to take prolonged sick days. He was doing his best to protect me from colleagues who might have had a bias against someone who they perceived to be unable to carry her weight.
So I soldiered on with a heavy workload, overcompensating for any work absences, and was promoted and placed in a corporate leadership program which brought more work opportunities and more stress. I remember working long hours, eating lots of pizza and enjoying more than my share of red wine.
Another Message from my Body
In spring of 1989 after a relaxing vacation, I returned to work and upon entering the building with its glaring fluorescent lights, was struck with a blinding headache and impaired vision that would last 2 weeks. It took 3 trips to the emergency room and multiple specialists to finally diagnose me with optic neuritis, an inflamed optic nerve. A specialist at John’s Hopkins Department of Neurology informed me that this was, in fact, a symptom of MS.
Looking back on it now, it seems obvious that I had significant imbalances in my life, not the least of which was that I didn’t enjoy the highly political and rigid nature of corporate culture. But it would still take 6 more years of wearing the corporate “golden handcuffs” and a few more years of personal growth before I would take full responsibility for my choices.
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Take good care!
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