As an independent writer with limited experience in legitimate publishing since leaving the field when I moved to Atlanta, I didn’t know whether to laugh or cry when I was asked to write about my life with mul-tiple sclerosis. An educated woman who has run Hometown News for 24 years, the publisher is an expert – but as an MS patient diagnosed with relapsing remitting multiple sclerosis (RRMS) 30 years ago, I’m the expert on this subject and I’m here to tell you, the assignment is a quite a challenge. The story being asked of me is more suitable to a series, a novel or a sitcom, but as a devoted member of this commu-nity, I’ll give it my best shot.
Multiple sclerosis is a chronic (incurable) disease of the nervous system, meaning it affects the brain and the spinal cord and thereby affects nerves in various parts of the body served by those two organs. A typical “first presentation” of MS, for example, is optic neuritis (inflammation of the optic nerve). This can cause a variety of eye symptoms such as double vision, blindness in one or both eyes (which usually re-solves over time or with treatment) or nystagmus, which is fun. It makes your eyeballs feel jiggly and makes eye focus out of your control. And that’s just the beginning.
After my first bout (“attack” or “exacerbation” are the terms typically used to describe worsening symptoms), I was fortunate to recover without treatment. Good thing too, because there was no treat-ment available. I am not yet 60, but at the time my symptoms first appeared – late 1970s until 1980 – there was not a single treatment option for MS. A number of treatments have been developed since that time, but none is a cure. Both the cause and the cure for multiple sclerosis remain unknown as of now.
Remember how back in the mid-20th century we survived – even prospered! – without cell phones or the Internet? Another technical wonder unavailable when I got sick was the MRI scan. As common as an X-ray today, MRIs were not in use until later, so there was no way for neurologists to intricately image the brain or spinal cord to locate the lesions we now recognize as signs of MS. A person was diagnosed us-ing a set of criteria, and that criteria sometimes took months or even years to add up to a diagnosis of “probable MS.” But after my third or fourth attack, and after being referred to a neurologist at the prestig-ious Albert Einstein Medical Center in Philadelphia, my compassionate primary care physician sat me down in his office, looked into my eyes and gently said, “I think you have multiple sclerosis.” The neurolo-gist’s official report was dated September 1980, and I have kept that original letter ever since. I remained able to walk, my eyes recovered, life went on and in 1988, I moved with my family to Atlanta to follow my husband’s job and settle in Decatur.
My daughter was enrolled in Shamrock High School. My husband had his challenging new job, and I floundered for a year or two before joining Children’s Healthcare of Atlanta at Egleston. After a brief stint in the social work department, I found myself working in the hematology-oncology department’s Brain Tumor Center, now known as the Brain and Spinal Cord Tumor Program. So as fate would have it, I would spend the next 12 years ordering, viewing and reading the reports of children’s brain and spinal cord MRIs, those very radiology images unavailable to me a mere 10 years prior.
At my desk one day, my computer screen suddenly became two. One moment I was looking down at a document, and when I looked up there were two computers as if it had split, amoeba-like, into two separate monitors. By the way, I do not use illegal drugs or tend to have hallucinations; I could only think it was MS, coming back to haunt me.
RRMS presents itself in different ways in different people; no two patients’ histories are the same and even within one’s self, a body is full of surprises, annoyances and frustrations on a daily basis. Someone with devastating symptoms such as vertigo, balance issues, eye problems, spasticity and pain can look great, even as they have no energy, poor motor skills, tingling sensations that come and go and numb-ness of the extremities even if not paralyzed. I experienced vertigo that was so severe I literally tore holes in my bed sheets as I tried to hang onto a spinning world, as my brain convinced me the sky was down and the floor was up. I couldn’t drive for over a year. I bought a cane. My vision is blurry. But I look nor-mal to most people, even as I feel anything but normal on any given day.
In addition to RRMS, which is the mildest form of multiple sclerosis, one can be diagnosed with other forms of MS, which are the same disease but manifest in either immediate worsening of symptoms fol-lowing diagnosis (primary progressive MS), or a slow slide in which a patient may lose abilities over months or years (secondary progressive, common after living with RRMS for awhile). Frequently read-justing lifestyle, house and home, career and social life to accommodate the new challenges the body brings is exhausting.
If you’ve dug ditches all day and your arms ache and you fall asleep immediately after a hot shower, you sure were tired. I wake up feeling that tired and achy most days of the week; that is how many of us start the day and struggle to work, maintain a household, raise children, etc.
Medications abound, all to treat symptoms (in my case, unremitting fatigue, nausea, dizziness, pain and spasticity). Mostly all medications have undesirable side effects and it may take months or years to find the balance that allows you to function to your highest level – if you can afford to pay for them.
Even good insurance coverage won’t always pay for the pricey meds necessary to maintain quality of life. Some drug companies will work with patients – especially those without insurance – to offer deep discounts or even free medications depending on eligibility.
When I found myself falling asleep at the wheel one autumn as I left my full-time job and it was get-ting dark by quitting time, I was prescribed a prescription that costs $16 per day. And when I lost that job and had no insurance, I bought that stuff over the counter at retail so I could go out and look for work. My savings were depleted and by the time I had my latest and worst exacerbation in 2010, I had no savings and no insurance. Hence my mantra: “MasterCard! Don’t leave home without it!”
I was deemed permanently disabled in 2012 after an 18-month battle with Social Security. I still walk unaided, drive short distances, fend for myself and have Medicare to pay for medical care. This isn’t the story of my life with MS. This is just the beginning of my story.
I heartily recommend anyone newly-diagnosed to get in touch with the Georgia Chapter of the Na-tional MS Society, where information, support, advice and all sorts of resources are available. Its web-site is http://www.nationalmssociety.org/chapters/gaa/index.aspx. Facebook has groups of supportive friends who discuss, support and advise each other. And of course your medical team should always be your first point of contact regarding treatment options. Myths, rumors and news tidbits are mislead-ing and can cost you money and your health. Stay away from non-professional “miracle” treatments and diets.
When I was diagnosed (remember, I’m a dinosaur), there was no Internet. I went to the public library and called the National MS Society, who sent me brochures. We have come a long way since then. When I was well, I did the MS walks to raise money, I stuffed envelopes for Bike MS and I was trained as a peer counselor over a period of eight weeks, to counsel others who needed an ear.
So I know what I’m saying. You out there, maybe scared or feeling overwhelmed, are not alone. I am here, along with the MS Society.
I have been blessed with a relatively benign course in that I can still take care of myself, have most of my faculties (short-term memory going, going, gone!), have world-class medical care via Shepherd Cen-ter and a family, friends and neighbors who I believe are angels in disguise, put into my life for good rea-son.
I have an awesome cane I purchased at the Yellow Daisy Festival, hand-crafted and polished to a burnished shine by a talented craftsman in Maine. I already have my shiny red scooter picked out for the day I will need it. And after the divorce, when I needed to move, it was no accident I chose a smallish, one-story, low-maintenance home that would later be amenable to “accommodations.”
Some call multiple sclerosis the “monster.” I think of it as “mystery sickness.”
Either way, it can be difficult yet make for fabulous chat at cocktail parties. It’s all in how you look at it. With God, all things are possible.