“How long have you been sick?” she asked.
“Oh, I’m not sick,” I responded.
The dental assistant who was taking my information looked puzzled. I continued, “The neurologist who is treating my MS suggested I see the dentist as he specializes in jaw problems which I am having.”
She asked again, “How long have you been sick?” I saw a look of impatience sweep across her face. Then I realized her inquiry was not about my current health but my MS...
Walking through the front door of our very old house I was greeted by the alarming smell of hot metal and something burning. As I ran into the kitchen, I discovered the metal was the empty tea kettle, which was now melting down the side of our 1940’s range and hitting a flooring product from the same decade that contained enough asbestos to just smolder rather than ignite. It was this incident that confirmed my husband of several months could not boil water. That was1988.
Things changed with the arrival of our son in 1993 as he quickly picked up the skills of making formula, which requires boiling water. Nothing like a baby to get you acquainted with the kitchen, and – as it turns out – to prepare him for things to come...
Looking down into my family room from my kitchen table, I noticed my blue, metallic walker with the seat on it had become an end table. Fortunately, it blends in well with the blue décor of the room. It holds the remote, phone, keys, papers, snacks and it’s portable. It has become such a part of the furnishings that I forgot I once used it to get around. Now it is being repurposed as furniture or auxiliary seating. This realization made me a little queasy, because I couldn’t remember when I stopped walking. I know it was a gradual process and I’m assuming that comes from having MS for many years.
Signs of the struggle to stay on my feet are all over this house. The wallpaper alongside the door leading from my bedroom into the bath is completely worn away from clutching the frame to steady myself as I made the transition from carpet to tile. Grab bars at all heights and angles now go unused except for the one of three in the powder room, which is perfect for hanging towels...
Looking in my rearview mirror all I could see was a profusion of pink. Leotards, tights, tulle skirts, slippers and dance bags belonging to the three giggling girls in my back seat. It was my turn to pick up the ladies from ballet that very warm fall afternoon. I got caught in heavy stop-and-go traffic. Suddenly, my right leg would not move anymore between the gas and brake, and when I did step on the brake my leg bounced wildly up and down.
Panic was not an option. My daughter was sitting in the front next to me and inquired as to why my leg was acting so funny. I reassured her it was just my bad leg acting up, which immediately was relayed to the back seat, “Mom’s bad leg is acting up. We are pulling over for popsicles and treats.” Fortunately there was a convenience store up-ahead and with the help of my left foot we made it safely into the parking lot. The corps du ballet jumped out, thankfully oblivious of what could have become a bad situation...
Seven months ago, in the frigid pre-dawn hours of January 5th, two New York state police officers stood in our kitchen. They explained to my husband and me that our beloved, yet very troubled, son had taken his life, and at that moment I forgot I had MS.
Oh, there have been other times since being diagnosed in 1999 that I wasn’t aware of my condition, but it was always lurking, ready to once again take up too much of my thought. On that morning it was the furthest thing from my mind, and it stayed that way as our now family of three stumbled through the next few horrible weeks...
It had been snowing steadily all afternoon – an unusual event even by Buffalo standards as it was only the second week of October. Big fat flakes that were at first melting but then, began to stick to my very green grass, baskets full of blooming geraniums and the leaves on all the huge trees in my back yard that had not even changed color.
My children, then eight and thirteen, returned from school filled with the excitement that the first snow of the season always brings. As for me, my excitement turned quickly to anxiety when the first of many enormous limbs came crashing down on the deck. This was the start of what now is referred to as “The October Surprise,” one of the most devastating and costly snow storms to ever hit the area...
When it got dragged to the curb, my good friend and neighbor Michelle, walked across the street and remarked, “Aren’t you embarrassed that everyone will know you have furniture like that in your house?”
We burst out laughing as my favorite recliner was now perched upon a frozen snow bank, full of stains, the wood frame showing through the rips of upholstery that Flash, our cat, created. The replacement was delivered, it was the perfect color, updated style and it swiveled. It was this feature that landed me in rehab with a broken leg. Getting there was more painful than the break...
“Keep in mind it might become absolutely impossible to pull up your pantyhose while hanging onto a walker. Putting on your pants will be no easy feat either. While you can start out sitting down, a point will be reached where you must get up. We recommend you hope for the best while pulling, zippering, tucking and buckling. We also recommend that you stop wearing contact lenses as the dexterity in your fingers might become compromised enough that you can’t get those delicate disks out of your eyes. Now you have a nice day and the nurse will be right in to show you how to use your injectable.”
Of course this conversation never happened, but wouldn’t it be helpful at the time of diagnosis to have the "Reality of the Situation Committee" stop in and offer up some insights into what your life with MS might be like?
“Oh, I’m sorry, am I in your way?” “I’m sorry, could you hold that door?” “I’m sorry to bother you, but could you help me reach that cup?” “I’m sorry to hold you up, but could you help me to the bathroom before you go out?” “I’m sorry, I’m just having a bad day and I’m moving kind of slow.” Enough already! What exactly am I apologizing for? Having multiple sclerosis? What is wrong with that picture?
When a chronic illness like MS barges into your life and the lives of those around you, it opens the door for negative emotions such as resentment, self-pity and guilt, to name just a few. Now, guilt can be a good thing—in moderation. It keeps us on the right road at times, but feeling guilty because one has MS is ridiculous. And yet, I am sorry to say, I do. I feel guilty.
I never considered myself an MS activist, but the lobbying efforts happening in Washington, D.C., to keep MS research funding in place along with my own personal experiences dealing with MS since 1999 has made me reconsider. I need to become more involved with the issues that all people with MS face every day—issues that range from building accessibility to health insurance coverage to the complex web of Social Security Disability, Medicare and Medicaid.
I started being an MS activist this week over my health insurance coverage. My neurologist had wanted to try IVIG infusions after I experienced complications with one of the other infusible drugs. She ordered it, but my health insurance denied it on the grounds it was not an approved treatment for MS. I appealed; they denied it again. My doctor appealed with supporting documentation and they still denied her request. Many people have used IVIG for MS. Some other insurance providers cover the cost, but not mine. So I called a local TV station with a large news staff, some of whom are dedicated to consumer advocacy issues. They have started an investigation on my behalf and are considering a story on the bigger issue of who is really making our healthcare decisions. Stay tuned! This experience and my boldness made me realize that activism has many forms. You don’t necessarily have to go to Capitol Hill to be an activist—you just have to fight for what you believe in and need. Go to nationalMSsociety.org/appeals for more information on health insurance appeals.
Dealing with the Social Security Administration is a whole different ballgame, but they also need to level the playing field. I was denied Social Security Disability Insurance (SSDI) three times because at the time of my application I did not have enough working quarters immediately prior to my total disability. Even though I had dozens of years of continuous employment during which I paid into the system, I was penalized for being a stay-at-home mom. The rules and regulations must be changed to address the realities of those with MS who cannot rejoin the active workforce in order to establish their eligibility for SSDI.
Loopholes in the Americans with Disabilities Act still allow businesses, municipalities and even our healthcare system to pay lip service to the goal of providing disabled citizens meaningful access to public spaces. This is one thing we can all do something about. Complaining has its benefits. Squeaky wheels sometimes get greased. We people with disabilities must, as a class of citizens, speak up even when we think no one is listening. We must. Or else the drugstore will remain closed to me and anyone else who requires an automatic door. The local government office where handicapped parking tags are issued will remain inaccessible because of concrete stairs and the absence of a ramp or elevator. Even the front door to a local MS clinic will only open to patients with the help of others. So as a group, let’s advocate for each other, by advocating for ourselves. Become an MS activist, like me.
Learn more about self-advocacy at nationalMSsociety.org/selfadvocacy.