Susan E. Cohen and her team are competing for the opportunity to create and perform a poignant musical about people living with ME/CFS called “Bathrobe Heroines,” which has reached the semifinals in the Chicago Voices competition. Bathrobe Heroines is competing against seven other groups for three spots to develop the story into an original music theater work with the support of Lyric staff and artists.
Please vote for “Bathrobe Heroines.” Voting takes place daily so cast your vote everyday until April 2. (Only those with a US zip code can vote.)
I do a pretty good job of passing for normal. I almost always wear gym shoes so people assume I’m some sort of athlete who jogs at dawn or is about to pop on to the nearest treadmill. I actually wear them because, besides being comfortable and supportive and a little more bouncy than a traditional shoe, they save tiny shreds of energy. I usually leave my purse in the car–my keys in one pocket and my phone in the other with a credit card saves carrying weight–more precious shreds of energy. When I travel with my husband, he will bravely carry my purse for me at times to save my strength. If I am feeling well enough, I take it back from him. I always do as much as I can–he understands that; he knew who I was before I got sick. He is really the only person who has fully witnessed my struggle.
I sit wherever I can–cocktail parties are the worst. People like to stand at parties in America– that way if a few minutes of chitchat is not highly rewarding, you can effortlessly move on to someone else. I know, because I sit at cocktail parties and wait for the courageous soul who will come and take the risk of committing to sit next to someone. I have been known to sit and even lay down sometimes in very unusual places, the floors of airports, the floors of supermarkets; anywhere you end up standing-in-line, you may find me sitting, which is why I usually wear pants.
I have an illness for which there is no cure nor any real treatments, a disease that does not sound like a disease, but is more disabling than most. When I am really ill, no one sees me except my family. You can only find me horizontal, laying on our bed or, if I am too weak to make it upstairs, laying on the couch; in either case my legs angled up against the wall at first to let the pooled blood circulate back. I will lay there for hours feeling like I am cloaked in death, a toxic sensation completely taking over that renders me helplessly weak and powerless to move, the body’s very effective way of telling you that you have overstepped your limits. At that point you don’t get to decide whether you can do more or not. The body cannot go further. Pain in the lymph nodes, lots and lot of pain. This is another feature that people don’t seem to grasp. No matter if I have tried to explain the illness before (which is why I usually don’t bother), any time I mention pain, they invariably comment again, “I never realized you have pain.” Most of the time, because I do not complain and am out of sight when I am severely ill, they do not even remember that I am not well.
Contrary to popular opinion, stress does not make me ill–only using physical energy will do that. Walking too long (and “too long” is not very long indeed) whether on a beach or a garden path or just on the street where I live, will render me hopelessly sick. A short spurt of dancing, my formerly most favorite of all human pursuits whether it be ballroom, modern, disco or folk will make me ill very quickly. Carrying, lifting, hiking, biking, cross-county skiing, tennis – all out of the question. “Face it,” I was told at a medical conference by an exercise physiologist, “Your aerobic system is broken.” I am forced to live like an invalid, while my body yearns to play like an athlete. I cook in the kitchen sitting on a high chair. I make brief “healthy” appearances and then I lay down.
I am a whole lot better than I used to be. For the first five years of the illness, I was bedridden much of the time. I could make it to the bathroom and the table to eat, but not a whole lot more. By experiencing overwhelming weakness, I am now able to understand how people actually die even when they desperately want to live more than anything else. I constantly come to terms with the limits of willpower, something that our culture does not accept. We battle our diseases in America, we fight the good fight, we overcome, except when we can’t. Until I had this illness, I did not understand how the mind, no matter how strong its willpower, must eventually bow to the body. With this disease, I learn this lesson over and over again.
And yet… every time I start to feel even a trifle better for part of a day, my optimistic side takes over and starts to seduce myself. Maybe I am improving, maybe I can walk a little further, maybe I can keep going. It is hard to believe that someone can keep fooling oneself over and over like a built-in Charlie Brown, but that is exactly how I live. One doctor called me, “The ultimate masker.” What I really am is a consummate amateur actress, playing the role of a healthy person for the public, playing the role of a not-so-sick person for my physicians, my acquaintances and, ultimately, for myself.
Which is why people occasionally still invite me to travel with them. I am an adventurer at heart, but these good meaning people have no idea of how I would hold them back. I can’t go to the market place in the early morning and then through the museum and then on to the palace, the temple, the ruins. Only in my fantasy. I imagine that if I am in a different, exotic country, I will inhabit a different body, my real body, the body I was born with, the body that had limitless energy the first 24 years of my life, the real me.
Obviously, I still have not integrated the sick person I am with my self-concept. In my heart, I aspire to be an adventurer. In my brain, I am a popcorn popper of plans and temptations. In reality, I can do one activity and, on a good day, maybe two, but not day-after-day in a row. On a bad day I have to be still. I have to wait for the temporary reprieve that recovery mode will eventually bring. Have I ever been well for a whole week in the last four decades? I would have to say no. How about a few days in a row? You mean, the whole day, all of those few days? No. One whole day? In the first thirty years, never. Now, once in a great while, it happens. This is an illness that never leaves you. It inhabits you, it stands ready to consume you, it shadows you in the rare moments you appear to live normal.
Do I describe this to you now because I seek pity or sympathy–unequivocally, no. I describe it only so you have a chance of understanding how I live, that I inhabit a completely different world, that I function in a very unstable universe of illness, where things change every few hours and, therefore, for which I must make constant accommodations. That to my consternation, I find myself a delicate flower who cannot abide the cold, who can get a sore throat followed by bronchitis from a brief chill. I am someone who once canoed down the Allagash River, who camped outside in the winter, who worked as one of the first female mailmen, a person who ran along the beach for the sheer joy of movement. I remember myself going out to dance in the rain…
When I first became ill, I was diagnosed with Leukemia, then Hodgkin’s disease, then “nothing” because the disease I suffered from had not been named or even discovered yet. Our physicians knew they could not cure everything, but they thought they could, at least, render a diagnosis. If your complaints did not fit into one of the medical sorting boxes, you simply could not be ill. “You must have more symptoms,” I was told. “You must have fewer.” “You should get married,” the infectious disease specialist counseled.” “You should work on your brilliant doctoral dissertation,” the Mayo Clinic advised. I was told time and time again, “If you were a man, this would not bother you,” and, “If you got married, this would probably all go away.”
The disease I have was originally called CFS for “Chronic Fatigue Syndrome,” in this country, then briefly referred to as CFIDS for “Chronic Fatigue Immune Deficiency Syndrome.” There was a quick flirtation with “Neuroendrocrine Immune Disorder,” while Myalgic Encephalomyelitis or ME has been the title for a long time in most other countries. At the moment the medical choice of our national experts is a combo platter name of ME/CFS. The reference to “chronic fatigue” makes the illness sound like people are tired. Let’s face it, everyone in America is tired. Tired is nothing. We have all been tired. Tired is something you push through. You have a cup of coffee, you shake yourself out of it, you soldier on. Tired is not Chronic Fatigue Syndrome. Profound debilitating weakness—now that is ME/CFS.
A new IOM committee, supposedly validating the illness as a real disease, just recently proposed “SEID” for “Systemic Exertional Intolerance Disease,” which unfortunately conjures up the image of a “couch potato” or perhaps aged people propped up in wheel chairs in the halls of a nursing home.
Last weekend I attempted a walk in the Botanic Garden with a good friend. “Are you sure this isn’t too much for you?” she, who knows me well, asked. “No, I love it,” I answered bravely. “The fresh air feels so good, the walking really lifts my spirits.” By the time she dropped me off at my car, I was beginning the descent. This phenomenon—a severe reaction to even relatively mild physical exertion—is a hallmark of the illness called Post Exertional Malaise or PEM. I barely managed to drive home and get into the house as I felt the illness gathering momentum and then completely taking over. I cancelled our Saturday night plans; I stayed home Sunday waiting for the siege to pass. I was still in pain and enveloped with weakness at bedtime.
I had a lot of time to think. I thought about how nobody, except those who are stricken or their close family members who live with them on a daily basis, really understands this illness. I thought about how I hide it most of the time. And, as I lay there, feeling like I was dying, I decided that perhaps it was time to come out of the closet.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the