NOW THAT I AM SICK, WHO AM I?
In August of 1995 I was diagnosed with Atypical M.S. and it attendants - CFIDS, Fibromyalgia, Toxic Brain Injury, Neurally Mediated Hypotension, Neuropathy and a host of other concurrent illnesses that basically felt like a death sentence. I had been dragged from doctor to hospital to labs and been poked and prodded and scanned so much since that April I was beginning to think I was going to glow in the dark. At first I was relieved to finally have an answer. I wasn’t losing my mind or suffering from a schizophrenic episode. I had been plagued by depression and panic attacks for years and believed this was it again. This is was somehow just another stone on the pile that was my life. And then I was filled with rage that I was still alive. The doctor should have said, “The good news is, it’s not AIDS. The bad news is, it’s not AIDS.” I had suddenly gone from being someone to being another casualty. And I was only 38.
Until that time I had a small but personally fulfilling acting career. I did a few local commercials in Boston, I did tons of voice overs, I had worked with a comedy troupe early in my career. I was not known, I was not among the elite – but I was happy. Acting for me had always been a transcendental experience. I remember being on stage at college and feeling like there was a river surging through me. Now I felt nothing but pain and fatigue so profound it defied explanation.
The comedy troupe I worked with in my first years in New York had so many gigs in 3 years that when I got back to my apartment every few months I realized the sheets had been on my bed for eons. The nicest part of it was the agents taking myself and my fellow power-hitter comedienne Deb Kasper aside and tell us, “You two are the reason we get are getting the troupe so much work.” (Deb Kasper eventually became a writer on the Roseanne show, subsequently Rosie O’Donnell’s talk fest and is now on tour with her own show ). Deb and I eventually went out on our own but I soon got married to the man I had been living with. And he was someone who didn’t want his wife in smoky bars until 3am telling jokes or out on some set in the middle of a cold night in Times Square. I sold the rights to all our writing work to Deb and moved on. But now, I couldn’t even be a good wife. I couldn’t get out of bed. In addition to physical paralysis, I was paralyzed with fear.
We in the CFIDS community all know what those first years are like. If you are lucky you are just fatigued. But since my form of the illness came from a toxic exposure it had passed my blood brain barrier and literally eaten into my limbic system. 2 gay men I worked with who had HIV died before they could develop full blown AIDS. 5 of us became permanently disabled and over 20 are still struggling with illness hanging on to their jobs by a thread.
Well meaning people would say, “Yes I know how you feel. I get tired too.” No you don’t. Not like this. No one got it except other patients. We would look at each other at the doctor’s offices where we layed down on the floor because we couldn’t sit up, with desperation. “Please kill me,” our eyes said. And the mainstream medical community continued to laugh at us as “tired yuppies.” I kept thinking, this is a bad dream. I will be back in a couple months. This can’t happen to me. But it did.
I had no control over my body. Time would bend. I saw shadows that weren’t there. I often couldn’t move on the left side. If I talked it came out like garble. I couldn’t hold food down and initially lost 25 pounds in just a couple months. I had to use a cane or a wheelchair. I was once a voracious reader with a B.A. in English Literature and I could no longer understand the language. I still have problems with speaking sometimes and I used to make my living at it! The doctors found I also had heart problems and the chest pain was unbearable. I couldn’t feel my hands. I was constantly sweaty as my body tried to deal with my assaulted immune system. I couldn’t exercise anymore as my blood pressure would fall through the floor and I would pass out cold. My sleep was unrefreshing and I felt like someone had hit me all over with a steel pipe every day. I couldn’t hold utensils. My hearing played tricks on me. I was emotionally labile and am still not able to make good decisions interpersonally. My tongue tasted metallic. I would not eat for days hoping maybe I would finally get off the planet and stop taking up space. And my brain was on fire. My dearest friend would come over and get me into the shower where I sat on the floor of it while she hosed me off. I couldn’t brush my hair or my teeth without help. I remembered the years I worked at the nursing home near my college to pay tuition. I was no longer the caregiver. I was the patient. I had lost all control over my life. I couldn’t drive and I couldn’t lift a finger. On days when my brain function was better I felt like a caged animal. I wanted to scream and nothing came out. Even my acting training couldn’t have prepared me for this. But I could cry and did.
Now the worst blow to me was in the family arena. I had been an infertility patient since 1985, starting shortly after I got married. I had initially hoped to have my kids in my early 30s so I could still be a mother and go back to work. I was always very mature looking for my age and my agent had assured me if I went back to work at age 40 or 45 he could get me work. I had it all planned out in my head. I was in control. I could do little jobs here and there. I took a couple full time jobs when I was on a break from the baby chase with a large Public Relations firm and as the Head Casting Manager for a Special Events firm among others.
I later worked as a legal researcher for an agency that serviced the legal industry after taking courses at Fordham. I was raised with a strong work ethic and the thought of not working was foreign to me. So I made sure I had survival jobs between gigs. I had great relationships with well known white shoe legal firms who were regularly fighting over my services. It was a real ego boost during the down time. My mother had always wanted me to be a lawyer. I probably would have been a great one with one catch – I have a soul. So this was better than nothing in her eyes. But even this was not to be. I often worked 70 hours a week, late into the night and was a total stress junkie. I could type over 90 words a minute and knew more about open cases than most of the Senior Partners at firms where I worked. Now I was crawling on my hands and knees to get to my bathroom.
Medical intervention was nothing new to me. I won’t bore anyone with the laundry list of procedures and surgeries I had done to me to try to get pregnant. Suffice it to say I was on a first name basis with most of the Reproductive Endocrinologists in Manhattan. I was the poster child for women with Polycystic Ovarian Syndrome trying to conceive. I found I was one of the oldest diagnosed patients in the United States and became friendly with doctors and researchers at the Human Genome Project. I was a lab rat with a goal.
For almost 12 years my legs were black and blue from hormone injections. Every infertility chat on the internet knew my name. I gave up covering up with a gown at some appointments as half the New York medical community knew what I looked like from the waist down. I was just waiting for my uterus to be featured on some Infertility pamphlet. I tried to handle it with my usual bravado but as the years dragged on and the many miscarriages came and went and I was still childless, it became a singular obsession. In my mind it was a total assault on who I thought was supposed to be and my femininity. My life prior to coming to New York wasn’t always rosy and I was having such a good life after I got here I thought I was finally getting a break. Wrong.
Disability almost ended my dreams. It totally reduced me down to nothing. Maybe I had gotten too cocky. Maybe this was it for me. This was the end of the road. And my family wasn’t terribly enthused. In fact, they were downright embarrassed. Not our daughter – the force of nature. I couldn’t think of having children in this condition. What kind of mother would I be? I couldn’t work and more importantly, I couldn’t be me. I spent two years fighting with my lawyer for Social Security and have a continuing battle with my Long Term Disability Company. My Workers Comp case looks like it may take 10 years to settle. My savings went down to almost nothing and my credit report looks like Swiss cheese. This from the girl who used to get everything handed to her on the corporate dime. When I thought about my life I was beginning to feel like God’s Personal Entertainment Center. As if it was a test to see when I would cry “Uncle.” But I wasn’t mad at God, I just wondered what it was he wanted from me.
When I could actually make it to the subway four blocks away and drag into the City I was so in love with, I couldn’t meet anyone’s gaze. I would see people from my old life and avoid them. Or they would see me and not recognize me. I couldn’t go to Broadway without getting so upset I had to leave. I needed almost an extra hour to get anywhere when just a few years before I would practically sprint the streets. I couldn’t seem to remember how to get to the apartment I had lived in since 1989 or sometimes even what borough I lived in. The stimulus I used to crave was now more than my brain could handle. Seems the virus was ‘chewing on my wiring’ so bad that I could barely read or even watch television. I started to try to do little things to retrain my brain like puzzles, hand sewing and writing out papers for my lawyers in longhand. Often I would go back and see what I wrote and it made no sense. What used to take me 20 minutes now took days. I would memorize little things where before I could easily memorize long scripts in very short amounts of time. As my friend, author of The Night Side and fellow CFIDS victim Floyd Skloot once told me, “Once you get CFIDS forget having a memory and carry a big notebook everywhere with your address and instructions how to get home in it.” He was right.
What had I done to deserve being this sick? I finally came to the conclusion that I had done something horrid down the line and this was my fate. The calls from friends dwindled, the calls from work stopped almost immediately. Except for a small inner core of friends and support, I was alone. And the friends my age who already had children stopped wanting to be around. They just blasted past me with their families. I was sick. And no one likes to be reminded that it could be them. And I couldn’t take the pity.
In Fall of 1996 I started to pull up out of the 2 year free fall from health and normalcy. Things got incrementally better but I still was living in a restricted box. The box sometimes got bigger but it was still there. Before, there was no box at all. I was and remain unreliable and unemployable. But I decided to try one last time for motherhood. My husband and I talked it out and I was determined to handle this or give up. At my second IVF, just one week after I turned 40, success finally came my way. Initially I started out with quadruplets. I made a painful decision to reduce the pregnancy to protect the children and myself. But the day I went for the reduction the doctor told me it was down to twins on its own. So I thanked God for making that decision for me and hung on for the ride. Silently I wondered if I should have done this. What were children going to do with a mother like me? How would they explain me to their friends? And could I handle it?
My remission didn’t last long. About the third month of my pregnancy some of my CFIDS symptoms would come and go in a couple weeks. I was put on total bed rest but defied it by sneaking in housework or cooking when I felt good. I was at the hospital once a week for tests. Just around the 5th month I started showing and then just exploded into a mountain. It was hard to walk and harder to breathe. But the twins were doing well. I passed the genetics testing with flying colors and found out I was having 2 girls so I went shopping when I felt up to it. And then the birth came along. In late October of 1997 during a stress test one of the baby’s hearts stopped beating a few times. I was put on a gurney and rushed through the three block long lobby of NYU Medical Center with a doctor straddling me and massaging my belly while the nurse running along side told me not to worry. Right. How many times had a doctor told me that during my life and he didn’t even know what he was talking about. Little did I know this wouldn’t be my first trip. After a sleepless night in the hospital I was sent home still pregnant.
I attributed a lot of my problems to being disabled and my body being unable to handle anything. But I was slipping out of remission and I knew it and I was scared. The anecdotal evidence that CFIDS would get better during pregnancy didn’t apply to me. Two weeks after the first incident, on November 3rd, I was having another stress test done and suddenly saw the gurney come in. They didn’t want to upset me but I knew right away what was happening. I was losing a baby. One’s amniotic fluid was dangerously low and her heart was stopping again too much for comfort. Another long trip thru NYU Medical Center’s long lobby with my shirt and bra off, a nurse straddling me and hitting my belly with defibrillator paddles. Now most of First Avenue knew what I looked like with my shirt off. Oh well, there goes the last shred of my modesty. A few hours later I was strapped down for a C-section where so much cutting was done my abdomen has never healed and my muscles are permanently swollen. But the babies were alive and out. 'Baby B', the baby with the stop and go heart had jaundice and some other problems. 'Baby A' was very healthy. While in the hospital I felt myself sliding further and further down that hill. I was having symptoms and not telling anyone for fear they wouldn’t let me bring my children home.
The first 7 months were hellish. 'Baby B' had colic every day, 24 hours a day. The screaming in my apartment was relentless. My endocrine problem forced me to stop breastfeeding only 2 months in. There was no money for help and I was living on 2 hours sleep a night for weeks on end. I had severe Post Partum Depression and had to be given heavy medication to make sure I didn’t harm myself until about 18 months along. But I had my children, despite feeling very selfish and unworthy of them. I flew out West to be with my parents for a while and they helped me get some rest while they doted over the twins. But some of those nasty symptoms from the first months with CFIDS were creeping back at an alarming rate. And I was scared that they would come back so far that I would be forced to move in with my parents for a couple years and not be in my own home. Or worse, I would never be left alone with my children and need constant help.
But finally I had some definition again to who I was. I was someone’s mother. It turned about to be a double-edged sword. I wasn’t prepared for the bizarre and intrusive behavior mothers of twins get. And I was limping again. The questions. The looks. Thank goodness I was ‘Queen of the Snappy Comeback.’ One online support group of mothers threw me off because most of the members felt disabled people shouldn’t have children when normal people who want them can’t. I couldn’t seem to explain to them that I wasn’t always like this. The only other problem was that I no longer had a name. I wasn’t Barbara, I was “the woman with the twins.” This Mother’s Day my husband got me new license plates for my car that said “TWIN MUM.” O.K. I can take that. The new me.
I can’t tell what the future will hold. My toddlers seem to have no problem with the fact that I spend all day on the floor with them because I can’t get up very well. I went back to the doctor for treatments and little by little have started to rehabilitate myself through my children. Just a while ago ' Baby A' called me “Mama.” They smile at me when they see me no matter how awful I feel or look. I am still part of the invisible disabled underclass but slowly my children are pulling me back somewhat into the flow of life. God obviously felt I was going the wrong way and needed something to set me off in another. Guess he knew I wouldn’t take a subtle hint well.
When you become disabled it is like a Dark Night of the Soul. You must redefine for yourself who you are. Your goals become simpler. Like a pilgrim you are stripped of the outer shell and material goods become secondary. But if you have children you must not define yourself through them but become something worthy of their respect. You come through it transformed. You will eventually realize that real answers only come from within. And to be sure, your illness will always be there, reminding you of your fragile humanity. You will do things like choose your children’s health over your own. You will push through pain and sickness in a way you didn’t know you could.
Will I work again? I don’t know. Will I ever act again? I hope so. Did I make the right decision to continue pursuing parenthood? Absolutely. Will I get well? Doubtful. But I have accepted the brutal reality that I will never be what I was. And I have tried hard to embrace what I am. I do hours of online support with similarly disabled persons. Sometimes it pains me that my children will not know what I was before. So I work at trying to be good where I am. I take my medication to try to keep my viral load down. Maybe someday, somewhere this trial will make me shine like a diamond. I try to take good care of myself but mostly, I try to be the best mother ever. Disabled or not. Now that I can do. And that is who I am.
