The Unspeakable Bits; From a Life with MS
4/20 was long counterculture code for the use of marijuana. So on April 20, I put out a broad question about the medical use of marijuana (MMJ) for multiple sclerosis to the Life with MS Facebook page. I was surprised by the overwhelming response and support for the legal use of the substance.
I was diagnosed with primary-progressive multiple sclerosis in 1997. "Progressive" means that the disease, well, progresses. I am now functionally quadriplegic, having only partial use of one arm.
To write this I am using speech-to-text software on my iPad. I also use my iPad to control the lights, heat, music and door locks in my house. I have been a wheelchair user for 12 years. I am unable to perform any of the activities of daily living (for instance washing, dressing, toileting, eating, etc.) and am completely dependent on home aides to help me with everything. Yet I continue to live alone in my own house.
Every mom wants to do the best she can to care for her kids and keep them safe from harm: We make sure our cars are equipped with proper safety equipment like anti-lock brakes and strap them lovingly into child seats and seatbelts to protect them in case of an accident. We make sure they are wearing a helmet when learning to ride a bike. At home, we hide the dangerous chemicals and put away the knives.But there are some things we can't prepare for, or protect our children from, such as devastating illnesses. Sometimes, our babies grow up safe and sound, and we still find ourselves taking care of them later in life. In that case, we want to ensure they are comfortable and looked after, and do our best to keep life as normal as possible when it might feel out of our control.
I have on occasion thought about moving away from Connecticut, where I have lived for 30 years, and returning to my home state, Maryland.
But whenever I start reviewing all the things I love about Maryland, I remember all the things – the people, places and experiences – I would miss if I left my current home.
You might call my wife, Kristi, and I a “Hollywood” power couple. I spent six years in the 80s (of my 20+ years in the industry) working on one of the most popular sitcoms of all time, “The Cosby Show.” Kristi is a professional voice-over artist, best known as “the voice of time” on the Food Network’s “Iron Chef America.” But… we no longer live in Los Angeles. In 2007, seeking a place that was quieter, slower and more family-friendly, we packed up our four kids in the car and moved to Spokane. Since I had been diagnosed with multiple sclerosis in 1997 and the LA heat had the potential to exacerbate my symptoms, we were also seeking cooler weather – we found it!
Immediately after my diagnosis, I took up video editing (a “sitting” profession) out of fear that I’d be dependent on a wheelchair within the coming year. I still do some editing and contribute to three video companies, but more and more I’m focused on raising my kids, fishing and speaking about what it’s like having MS at various local National MS Society events. I am not dependent on a wheelchair – I’m proud to say that my MS has been successfully controlled by treatment.
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.
After months (or even years) of questioning our symptoms, questioning medical professionals, questioning “Web – the Great and Powerful,” and questioning others with multiple sclerosis, we have reached the inevitable answer: we have MS.
Why then do so many people feel like they have the right to question us?
I love the “connection” theme for this year's MS awareness campaign. As scientists are discovering the amazing process by which nerves start to form new connections (remyelination), we in the MS community are also finding new and creative ways of doing the same thing. This month, we are broadening and strengthening connections within our neighborhoods and throughout the world. Connections are often created because there is a common need, combined with a realization that this need can only be met by a group effort. In many cases, the resulting connection stays alive throughout generations and becomes a part of history. Such was the case with a movement that many people still don’t know about: the disability civil rights movement.People with disabilities used to be even more isolated than we are today. Not only were we overlooked in the civil rights laws of the 1960's, but in some cases we underwent forced sterilization and mandatory institutionalization. There was also a general assumption that if we were unable to use a sidewalk or get into a building to apply for a job, it was the unfortunate hand we had been dealt and it was our responsibility to accept and cope with it.Things changed when people with disabilities – all kinds of disabilities – worked together to change peoples’ minds and eventually change the law. Ed Roberts, the “father of the disability rights movement,” used the press in 1967 to persuade University of California, Berkeley that he could attend classes in an iron lung. In 1977, disability activists organized a five-week sit-in at a government building in San Francisco, until the Carter administration finally implemented regulations to make public buildings accessible. And in 1988, hundreds of students and alumni at Gallaudet University for the Deaf effectively closed down the campus until a deaf president was hired. It was these types of protests that eventually led to George H. W. Bush signing the Americans with Disabilities Act (ADA) into law in 1990. In fact, the Society just honored a congressionalchampion of the ADA at the annual Public Policy Conference. Although we have a long ways to go before we have finally achieved a society free of disability discrimination, we are in debt to – and forever connected with – these heroes.
I’ve been writing, and thinking, about self-advocacy a lot lately. I blogged last week about how simply becoming better informed about issues facing people with MS can be a first step toward advocating for oneself.
I wrote that I don’t have a lot of experience as a self-advocate when it comes to managing my life and my condition. But on further thought, I have recognized one big area in which advocating for myself – by making sure I schedule time to exercise every day – has paid off in a big way. I have placed physical activity at the top of my daily to-do list. Making sure everyone around me recognizes and respects that has taken a bit of effort over the years.
When I was diagnosed, in 2001, lingering doubts remained in some experts’ minds as to whether it was advisable, or safe, for people with MS to engage in physical exercise. It’s hard to believe nowadays, but people with MS were once cautioned to refrain from physical exertion for fear it would exacerbate their symptoms or even hasten the progress of their disease.
But my instincts – and my own neurologist – told me otherwise. I simply knew that running, riding my bike, taking a hike, swimming and (when eventually I discovered it, yoga) made me feel better, stronger, more in control. It might have been easier, in a way, to just sit around on my duff. But my body felt compelled to keep moving.
I was also inspired by the former Olympic skier Jimmy Heuga, who was diagnosed with MS in 1970, when he was 26 and at the peak of his professional skiing career. Though doctors recommended he stop skiing, he didn’t. Heuga, who died in 2010, was a pioneer in helping the general public and physicians understand the benefits of physical exercise to people with MS.
Of course, it’s now widely accepted that physical activity can be enormously helpful to those of us with MS. Appropriately selected exercise can build and maintain muscle strength, coordination and balance. For those whose symptoms are heat-sensitive, alternatives such as swimming or choosing cool environments to exercise in can make physical activity more comfortable.
The National MS Society recently posted on its website a link to a useful article about exercise and MS; aimed primarily at African Americans with MS, the information it offers – particularly its long and varied list of exercise options – is applicable to all of us. The article wisely reminds us to check in with our physicians before embarking on a new exercise routine, just to make sure it’s a good fit.
One fun mode of exercise (one that might not even seem like exercise at all!) is the video game Dance Dance Revolution (DDR), in which on-screen directions guide you through a complicated dance routine. The level of difficulty can be adjusted to accommodate any skill level (thank goodness for me; I’m terrible at DDR!). A studybeing conducted at The Ohio State University Wexner Medical Center is examining whether, for people with MS, DDR can lessen the cognitive and physical impacts of the disease.
According to a press release about the study, “In the ongoing trial, participants exercise using DDR three times a week for eight weeks. The patients’ cognitive functions are tested at the beginning and end of the trial, and functional and structural magnetic resonance imaging is used to detect brain circuitry changes.”The release quotes research team member Nora Fritz as saying, “DDR requires a lot of cognitive processing. Players must look at a screen and time their movements to the arrows on the screen…. Incorporating DDR into standard MS treatments has the potential to improve balance, walking, cognition and motivation.”Those potential benefits aside, when I’m doing DDR – or running, walking, riding, or doing downward-facing dog – I try to concentrate on how good it feels to move and how much fun life can be. Breathing hard, sweating, and using my muscles are things I do for myself to keep my body and mind healthy. They are also things I have learned never to take for granted. Nor do I take for granted the vital role exercise plays in managing my MS. That’s why I insist on taking time to get out and get moving every day – even when I have to assert that need as a top priority. Learn more about exercise and MS at the National MS Society’s Exercise page.
"For a long time now I have been aware that you are taking up more of my life everyday..." - W.H. Auden, Letter to a Wound
My Valentine Ian gave me the most extraordinary present this year: a gleaming silver oligodendrocyte on a chain: Like a starfish, but smoother, less symmetrical, reaching in all directions. Oligodendrocytes are the cells that repair and create myelin, the insulation stripped away by multiple sclerosis. I picture my brain’s oligodendrocytes wrapping their many tentacles around my scarred axons, feverishly working to insulate my nerves. They wear happy, determined faces. But it’s more complicated than that. Now I imagine them lounging on what must be a couch of a partially myelinated axon, chatting, dozing, or just slacking off. As I learn more, the picture changes: these oligodendrocytes have done their work and have retired. They would like to help, but they need more recruits. Research into making the cells that could create those new recruits and remyelinate MS lesions, possibly resulting in restoration of lost function, is just one of the many areas of investigation that might help us understand and possibly cure MS.
I treasure this necklace. It holds symbols of protection and repair. Many years ago Ian gave me my ex-fiancé’s first novel, which I’d helped along in early drafts. On the gift tag he wrote, “I hope I can always give you what other men can’t.” Now, he’s given me a symbol of something my body can’t fully offer.
A friend recently told me she’s had MS 13 years. That’s about as long as Ian and I have been married. Which brings me to the realization that my relationship with MS is the longest-running relationship in my life, twice that of my marriage. Like Auden and his wound, “nothing will ever part us.”
My first eight years with MS were fairly uneventful. I could forget about the disease sometimes. With no treatment options available, I simply adapted. Sometimes, though, riding my horse over jumps in horse shows, I would feel MS passionately seize my hand so I felt nothing else and dropped my rein. He at least was kind enough to do this only on the side the judges couldn’t see. (I will henceforth refer to MS as a he, but he is invisible, inaudible and rather unpredictable, most likely genderless.) Minor symptoms would bring me down to earth, I thought; forgetting was the reward. After a few years, MS decided I should quit riding and training regularly. He can be a bit possessive.
When the first disease-modifying therapies (DMTs) became available, faculty in my graduate program would stop me in the hall, asking if I was hopeful about the latest medication. My standard reply: “but that would mean saying good-bye to an old friend . . .”
“Yes, but MS is not such a good friend,” a poet wisely replied in his melodic Polish accent.
Gradually, MS visited more often, gripping my left leg, pulling it back with each stride, or hitting my head with the boxing glove of dizziness. I always came back to baseline after the flare miraculously left, so I could still forget about MS for long stretches of time. About a dozen years after diagnosis, I was put on disease-modifying therapy. I learned that this did not mean saying good-bye to my friend; rather, it reminded me that even when MS wasn’t making his presence known, he was still around. Depending upon which medication, injections at regular intervals would remind me that MS was imperceptibly slipping his arm across my shoulders, particularly close to my spine.
I no longer forget about his presence. In fact, I am grateful for the days I walk without having to think about each step, or when I can walk my dog, fingers deftly wrapping the leash, after the hard work re-learning how to use them. My amber-tinted contacts and glasses cut most glare, pain that never quite left after optic neuritis. The lenses turn my eyes coppery, beautified by illness and treatment. My vision is literally colored by my disease. Thanks to MS research I take medications I never thought possible to mask other lasting symptoms such as spasticity and pain, helping me forget, but not quite. The treatment makes me remember. Also, literally, a pill helps my memory.
MS ultimately cannot be forgotten. It is both my friend and foe, intermittent but lasting. If I am an MS activist, I know it is through awareness—my own, and creating it in others—in my teaching and writing, in everyday interactions, knowing that the disease is so deeply linked to who I am and what I do.
We mustn’t let anyone forget, least of all ourselves. Or Congress. This week over 300 MS activists are meeting with federal legislators on Capitol Hill to urge continued funding for MS research and the FDA, standing up for those of us whose stance is words, for those of us whose stance is experience, for those of us who may know weakness, but turn our weakness into a source of strength.