Family, friends, and fellow patriots,
I have Multiple Sclerosis.
Every morning, the first thought I have in the first millisecond that I am awake, is that I can’t do it—I can’t go to work, for a walk, to the gallery, to my studio, I can’t get out of bed. And almost every morning, I do anyway. Imagine that you have the flu every day. That is not so far off from how I feel. And the flu days are the regular days; things can get much worse from there. This statement is not hyperbole.
I live daily with hot, stabbing nerve pain, muscles so tight that they refuse to bend to do what they should, muscle spasms all over my body that keep me awake at night, legs that ache like I have a fever, problems with my vision, dizziness, arms and legs that go numb and weak at inopportune times like when I am supposed to be driving or walking, bladder problems, and the most crippling fatigue you can possibly imagine. Not the kind of fatigue during which you binge watch a show on Netflix; the kind of fatigue during which you moan and cry and feel nauseous.
I’m pretty sure I have had MS since late high school (I am now 45), though I remember some of these symptoms from earlier than that. In the nearly six years since I was diagnosed, I have had back surgery, a fractured femur, a broken big toe, developed a foot deformity, and a drop foot. I have hip flexors that prevent me from running (and sometimes walking) normally, countless bizarre infections and illnesses, vision loss, numerous exacerbations of my disease which have caused any number of bizarre and lasting problems, brain fog which causes me to forget things and confuse words, and a continuous decline in my general physical abilities. I have such a wide array of symptoms, pains, weird sensations, and ailments that I could not possibly list them here and am quite sure that no one—not even my husband—has heard them all.
I inject myself with beta-interferon subcutaneously three times per week to manage my disease. It’s a pretty lousy task to attend to on many fronts. I pre-medicate with Naproxen to help combat the fever and achiness that result from the beating that I am subjecting my immune system to. The side effects of my disease treatment are a battle of their own. I sometimes have to cancel social engagements on short notice or ask other people to accommodate my scheduling needs because of my limited energy. I truly hate this. As time with this disease wears on, I find I have to work much harder to do much less.
MS is a special beast; it is disease and disability neatly packaged in one cruel monster, difficult to describe and sometimes difficult to see, easy for others to invalidate. To live with a cruel disease such as this is certainly not for the faint of heart; to live with a cruel disease such as this and have your integrity in relation to it questioned is formidable.
And so here I am defending my disease, disability, and access to civil rights.
"I live in crippling fear of the fact that all of the money I can summon from the people I know cannot pay for my healthcare needs, present and future, with or without for-profit health 'insurance.' This is a fact."
I am a full-time professor, member of an artist-run gallery, president of the board of a social justice non-profit, artist, gardener, mother, wife, dog and cat parent, animal rights advocate, yogi, and once I was an avid runner. Why am I doing all of these things when I claim to be sick, you might ask? Well, let me tell you in a list of three reasons:
1. Because I want so badly to be me, not my disease. My disease is a big part of me, but I was, and still am, so much more. I am a painter. My father has asked me when I will start painting about what it’s like to have MS. Perhaps some day I’ll be ready to do that, but in the meantime, my paintings are about climate change, maternal anxiety, and the suffocating encroachment of technology. I don’t make work about MS because I am more than my disease and because I have other pertinent things to say about the planet and my fellow earthlings.
I love being part of a community of artists who ask questions about the systems that don’t always support us, and who provide varyingly radical reactions to being told to follow the rules. I love working in academia and seeing my students off to the world asking more questions than they could possibly ever answer.
In short, I do the things I do against my better judgment and the signals from my body and mind because I want to be part of the world. Please remember this. People in my position want to be part of the world. People in my position do not quit their jobs without agonizing deliberation. People in my position do not want to withdraw from the family, friends, and culture that sustain them.
2. Because I have no choice but to live in the present. There is no cure for MS, nor is there a reliable prognosis. If you are not familiar with it, MS is a disease in which your body recognizes your nervous system as an invader and attacks it. The myelin sheath on the end of a nerve hardens, preventing nerve impulses from going where they should. This hardening is called a lesion and can form on the brain and spinal cord. The result is a myriad of undesirable scenarios: weakness, numbness, tingling, spasticity, incontinence, blindness, paralysis, difficulty breathing and swallowing, and death. The list of symptoms and ailments is endless. The nervous system is a crazy, cosmic thing. It’s hard to imagine how crazy and cosmic your brain and nervous system can be until yours is failing you. Basically, when you have MS anything that can go wrong, can go wrong. Some people live to be 85 and die of a heart attack. Some people progress quickly and die a grueling, early death. Some people seem like they are going to cruise into old age only to take a sharp detour toward the excruciating death part without much warning other than an unlucky exposure to a bacteria or virus. And some others live a long life full of disease and disability requiring intensive or extensive healthcare.
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I have no idea which of these groups I will be in. In the interim, I want to be part of the world. Please remember this.
Reason number three is the reason that I am writing this.
3. Because I live in crippling fear of the fact that all of the money I can summon from the people I know cannot pay for my healthcare needs, present and future, with or without for-profit health “insurance.” This is a fact. My current disease-modifying drug alone costs $8,000 per month. We can argue about logistics, but you should know that people who are sick research healthcare exhaustively. I can tell you that our current national healthcare cost trajectory exceeds the projected cost of Medicare-for-All by trillions of dollars over the next ten years. I can tell you that Medicare-for-Some would require negotiations with the healthcare and pharmaceutical companies resulting in higher costs. I can tell you that people in this rich nation die waiting for essential healthcare. I can tell you that a horrifying number of people must navigate medical bankruptcy while being chronically or terminally ill. I can tell you that people choose to go hungry to afford their medication or forego their medication to buy food. I can tell you that Medicare and Medicaid are funded differently. I can tell you that Medicare is funded by an ongoing infusion of federal tax dollars, while Medicaid is funded by a finite amount doled out by your state, resulting in often limited healthcare and heartbreaking, cruel decision making. I can tell you all of these things and still you might imagine that the people in these scenarios have done something to deserve it: they have not saved enough, they did not work hard enough, or they did something immoral to deserve their disease.
"That is my lot in life—to work myself to the point of shattering disability, without the opportunity to enjoy life at a pace I can handle along the way."
The people in the above scenarios are me. I am them. We are a secret club of the unlucky. We are the people at your job who agree to do too much despite the bags under our eyes and the fact that we are clearly doing so many different things that we are not doing a good job at any of them. We don’t talk about it because we worry that we will lose our jobs if we do. When we do talk about it, our bosses and colleagues tell us that we look great, as if that should make us feel great.
I am doing too many things in order to fulfill the requirements of being a full time professor. I am doing this to keep my job for as long as I can, until I can no longer work because I am so disabled that I cannot operate independently enough to do so. That is my lot in life—to work myself to the point of shattering disability, without the opportunity to enjoy life at a pace I can handle along the way. All of this in the hopes that I will have enough money and accumulate enough benefits to be properly cared for later. And then I will still be too poor to receive nursing care in my own home with my spouse and pets. I may have to navigate an under-funded Medicaid system and spend my days in a facility hours away from my home. I may not have access to the healthcare I need to sustain my health or my life. This is an untenable amount of stress to live under.
That is what happens to a lot of us in this club. All of the planning and saving in the world can’t buy nursing care that costs upwards of thousands of dollars per week. Our loved ones will launch Go-Fund-Me campaigns. We’ll have beef and beer fundraisers. Our spouses and children will make impassioned pleas on social media. In the end, our needs will get lost in the white noise of our lacking healthcare system.
Friends and family, this will happen to you too. Illness is an equal opportunity tyrant. For most of you it will happen when you are old. Some of you may get lucky and die of a massive heart attack, painful, but quick. Most of you will get cancer or Parkinson’s or Alzheimer’s and suffer terribly. Or maybe you will even find out you have MS. You will get something I’m sorry to tell you. And when you are suffering on a daily basis, I’m pretty sure you will find it too much to bear to hear that you must fight for the possibility of relief. You will be outraged that you can’t possibly expect to enjoy the civil right of adequate healthcare that your peers enjoy. You will realize, perhaps too late, that you want to be part of the world. You will realize that you have things to contribute and that the limited energy you possess because of your disability or disease is being taken by the management of, and worrying about, receiving adequate healthcare for that very disability or disease.
"Our loved ones will launch Go-Fund-Me campaigns. We’ll have beef and beer fundraisers. Our spouses and children will make impassioned pleas on social media. In the end, our needs will get lost in the white noise of our lacking healthcare system."
This is an injustice only those facing this dilemma truly feel.
So friends, family, fellow patriots, please do not consider this injustice as one lesser than the other injustices you fight against on a daily basis. Consider the cruelty inflicted on the ill and disabled when we are told that we are not important enough to receive the civil right of healthcare, or that we must be patient and wait for it. Consider, while you may acknowledge your other privileges, you may overlook your well and able-bodied privilege. Consider what it means for you to tell me that it’s too hard to care for me when you do not suffer the same lack of privilege. And then fight for me. Fight for your future self.
Healthcare is a right.
Medicare. For. All.