I’ve been resisting writing this blog post for a really long time. I mean…. years. It’s been years. I think I wanted to have a sense of my illness as a narrative but real life isn’t like that. It doesn’t have clearly defined beginnings, middles, endings. We assign a narrative to our life because it’s just something that humans do, we’ll talk about “the end of an era” when referring to a relationship or a job but if we’re honest with ourselves, the beginnings and endings are assigned or superimposed – they’re never really that clearly defined. There are always a few loose strands that don’t fit neatly into the narrative we’re trying to convince ourselves is the truth.
In writing about my disability, there is no real obvious beginning for me. Do I begin with the fact that my mom was malnourished through most of her childhood because of the devastation visited on the Philippines by World War 2? Do I talk about the childhood illness that left my Dad deaf in one ear and statistically unlikely to father even one child? Do I talk about the fact that I was born prematurely? That I had childhood asthma which meant lots of scary emergency room visits and a handful of near death experiences? Perhaps it was my cripplingly painful menstrual periods, the result of my having endometriosis (although this was not diagnosed until after I was disabled). Any one of these things may be a contributing factor to my current disability. We don’t know enough about ME* to know how or why it starts. It could be one of the above or all of the above. It could be something I haven’t even discussed in this blog because I don’t know about it. We just don’t know. So I’ll just start with when I started to feel not quite right.
In the summer of 2000, I moved to New York City. I’d been saving my money for a while to move out there. I decided I no longer wanted to work in the entertainment industry and I wanted a fresh start. A friend had taken a job managing a summer resort so he offered me his place rent free for the summer. It was the perfect set up for me. Not having to pay rent or buy furniture meant I had more time to look for the right job and the right living situation, one I could afford based on my salary. Unfortunately, it didn’t work out that way. The day before I was set to leave for New York, my friend called me. He’d fallen in love with a woman (who he later married & is still married to) and he couldn’t bear to be separated from her for the summer. He told me I could stay at his place as long as was necessary to find a place of my own. But when I arrived at his apartment, I knew it wouldn’t work. It was a tiny studio – great for a single person or a newly in love couple but not so much for a couple and their single friend. The next day I found a gorgeous apartment in Park Slope. The rent for my bedroom was more than double what I’d paid in L.A., and the deposit ate a huge chunk of my savings but it was worth it to longer be sleeping on my friend’s floor. Because of my expensive rent, I didn’t think I could afford to take the entry level positions that were offered me so I ultimately took a job waiting tables. I knew I could easily make the money I needed for my rent if the restaurant was successful. Unfortunately, the restaurant was brand new and I made almost nothing while I worked there. (On my best night, I made $400 in tips but after tip-sharing, I took home only $80 of it). I was working 7 days a week and was barely able to cover my groceries with the little I was taking home in tips. I was hemorrhaging money fast. And then I got sick. Because I couldn’t afford to take time off, I worked despite my illness. I would run into the kitchen to cough up thick green phlegm before serving my customers their food. (I’m sure I got a lot of people sick. Sorry about that. That’s what happens when you work in the restaurant business – there are no paid sick days for most restaurant workers.) Finally, my roommate, who had been a pre-med student, insisted that I go to the emergency room. When I went in, they wanted to admit me to the hospital right away. I had pneumonia, and my lung capacity test results were so poor they were justifiably worried that I would have an asthma attack and die. But I couldn’t afford a hospital bill – I had no insurance. So instead I asked them to load me up on steroids and antibiotics and let me go home. The ER doc and I made a deal. I would stay in the ER on an IV drip of steroids and antibiotics and take nebulizer breath treatments. They would test my lung capacity every hour. If it did not hit a certain number by the end of his shift, they would admit me. If it did, they’d send me home with antibiotics and steroids. At the end of the shift, I barely hit the desired peak flow (lung capacity) number and was sent home. I then spent a week in bed literally unable to move. Just shuffling to the bathroom was an exhausting endeavor. The restaurant called to threaten me – I would be fired if I didn’t come back in. I was too sick to care. When I got a bit better, a friend of my cousin found me a job waiting tables at one of the hottest bars in Greenwich Village. I met with the manager and she offered me a job right away. She assured me that I would easily make enough money to pay my bills. The problem was, I was completely and utterly flattened by my illness and waiting tables is a high energy job. I just didn’t know if I had it in me. I was running out of money and I couldn’t afford to stay in New York and not work while I rehabilitated. I opted to leave New York and move back in with my parents in L.A.
When I got to LA, the plan was to rest completely and then go back to work when I felt ready. I rested completely but after three months, I still wasn’t able to return to work full time. I started working with a doctor to figure out what was wrong with me. She did all the typical tests. They were all inconclusive. In the end, she gave up on trying to find something wrong with me, concluding: “you just have to accept that you have a dog of a body”. Meanwhile, all of this weird stuff was happening to me. I started to have problems with gum infections. My dentist told me that it was the kind of problem they saw in patients going through chemo, or AIDS patients, any patients whose immune system was under serious pressure. One time I went hiking with my boyfriend & a friend and I fainted at the top of the hill. Because I was unable to hold my head upright without passing out again, I had to be carried down the hill by paramedics. I spent the day in the hospital getting IV bag after IV bag of saline solution. My blood pressure, it turns out, was dangerously low. I suffered a vicious herpes infection and was sicker with it than I’ve ever been in my life. The sores in my throat made me feel as though I were swallowing razor blades whenever I ate anything. I had a high fever, and an achy, miserable feeling. My ob/gyn told me that I could have had the virus for years and that I probably only experienced this attack because of poor immune system function. Another explanation was that my boyfriend was a carrier. Either way I was miserably sick and sick for longer than I’d ever been before. Despite these red flags that my immune system wasn’t functioning properly, none of my doctors could find a reason for my body’s inability to thrive. So I tried to carry on with my life. I moved in with my boyfriend and started temping. With temping, I could decline jobs if I didn’t feel good, or I could call in sick and have another temp finish an assignment. This ended up being a relatively productive period for me. Even though I never felt like I had recovered completely from my pneumonia, I was able to work and volunteer with my boyfriend’s theatre company. I wrote an adaptation of a play and started working on a novel, I even did some volunteer work with 826 LA and a feral cat organization. I felt as if I’d finally figured out how to live with my diminished functional capacity. I was hopeful that I might make a complete recovery with time. Because neither of us were working steadily enough to pay rent on our little Silverlake duplex, my boyfriend & I were forced to move into a cheaper rented condo with a roommate. The condo was in a bad neighborhood downtown (next to a park which was notorious for its drug dealings) – it had been an investment buy for our landlord, who bought it dirt cheap, apparently. Despite the neighborhood, the condo had been nicely upgraded by our landlord and seemed like an ideal place for us to live until we could afford a nicer neighborhood. After we moved in, the homeowners association decided to upgrade the piping in the building. A contractor came into our unit and knocked holes in all the walls containing pipes. But then the contractors never came back to finish the work. The HOA and the contractor went into a lengthy lawsuit during which time we hit rainy season. There’s a good chance that even if we didn’t have mold in our wall cavities before the walls were knocked down, we certainly developed them after the rains came. In any event, my fragile equilibrium was destroyed & I started to struggle with work & my other projects. I made adjustments to address my diminished functional capacity. I stopped volunteering & working with the theatre company. I stopped writing. I stopped going out with friends. I took a job with flexible hours so I could go home early or go in late or take a day off work if I wasn’t feeling well. As long as my work was getting done, no one cared how many hours I worked. I could even work from home some days. However, my boyfriend’s car had been repossessed so in reality, I still didn’t have that much flexibility in my schedule – I had to carpool with my boyfriend, which meant observing his office hours. And since my boyfriend was always working at the theatre at night, I ended up feeling like a prisoner in my own apartment. I had no car to go anywhere, I couldn’t walk anywhere because the neighborhood was so bad, the only times I got to go out was when a friend came to pick me up but since most of my friends were involved in the same theater company as my boyfriend, I ended up spending a lot of time alone. The truth was, I didn’t feel well enough to go out anyway. I was always exhausted.
It was a bad situation for my boyfriend and myself and ultimately we broke up. My parents had just retired and moved to Idaho so I had to find a new place to live very quickly. I found a cute little apartment in West Hollywood and moved in. Unfortunately, I was unaware of the fact that my new apartment had mold and I began getting sick again. This time, I developed acute chronic sinusitis. Which basically means that I couldn’t breathe through my nose because my nasal passages had swollen completely shut and that mucus poured out of my nose like water from a tap. It was disgusting and annoying and uncomfortable, but I was still able to do my job with it. By this time, my quality of life was a bit better because I’d successfully started my own public relations business and was making significantly better money than I ever had before, but I couldn’t enjoy it because literally all that extra money was going to doctors and various non-traditional practitioners in my quest to solve my health problems. Due to my history of asthma-related hospitalizations, I could only afford catastrophic insurance so every doctor’s visit, every CT scan, was paid for out of my pocket money. I finally had my apartment tested for mold and was able to break my lease when the result came back. I moved again to a place that thankfully did not have mold. My fragile health returned to stable but with lowered functional capacity. I began to realize that staying in Los Angeles wasn’t going to be sustainable for me in the long term, even with the flexible hours of my new business. I had no quality of life. All my money went to paying medical bills and buying the best quality food (when you’re ill but have no diagnosis, then your only option is to focus on your lifestyle habits and hope that it’s enough to restore your good health). I used all my spoons to work and take care of myself and I barely had any energy leftover to interact with my friends. I’d exhausted every opportunity for a diagnosis. Despite visiting doctors, medical specialists, acupuncturists, herbalists, naturopaths and nutritionists, I was unable to find anyone who could give me a diagnosis or help me improve my quality of life or functional capacity. I couldn’t move back in with my parents because they lived in an extremely rural area, three hours from the nearest city. There were no jobs in their community. Most of my parents’ neighbors were either retired, or had a primary residence in Boise and used their New Meadows home as a vacation home. The nearest town didn’t have much more than a county hospital and a handful of restaurants. The nearest movie theater was over two hours away. There was no way I could make a living or have a life there. So I decided to move to Portland, which was eight hours away from my parents and had a rich culture of ad agencies, marketing and public relations firms. Portland was close enough to my parents that we could drive to visit one another, it was a city with rich cultural opportunities and it was much less expensive to live there than in L.A. I packed up all my stuff and drove up to Idaho. The plan was to spend a few weeks visiting my parents and then move to Portland. Unfortunately, when I got to Idaho, it was to discover that the forest preserve that backs onto my parents’ property was on fire. The air quality was so bad that every time I went outside I suffered an acute asthma attack. My acute, chronic sinusitis returned. I was sick the entire time I was living with my parents and decided to move to Portland sooner rather than later. It took me a few months to find a job. In that time my health seemed to improve slightly. But the start date of my new full-time job coincided with the start of winter. I admit, I assumed that because I was living in a healthy building (one that was LEED certified), I would be able to work a full time job as I had done in the past during higher functioning periods. Sadly, I was wrong. The ambient mold in Portland skyrocketed due to a wet winter season, and that, combined with the stress of my job, brought my acute chronic sinusitis back with a vengeance. Luckily, I had health insurance, so I could aggressively pursue solutions. At this point I was taking steroids daily – that was the only thing that was giving me the oomph I needed to work and keeping my sinusitis at bay. Unfortunately, it wreaked havoc with my sleep cycles and I suffered terribly from insomnia. Finally, after six months, I collapsed completely. I was so exhausted I not only couldn’t get out of bed, I couldn’t read or listen to music. I literally laid in my bed and stared at the ceiling all day, crawling to the toilet or the kitchen as needed. I thought I was going to die. My primary doctor told me that my blood pressure and body temperature were “worrisomely low”. I called my parents and made them promise to take care of my cats if I died. I was worried that I would die and my cats would be forced to eat my face and my parents would find that so horrifying that they’d shunt my cats off to a shelter, where they might not find a home and so they would end up being killed. It was really important to me to make sure that my cats had a good home after I died. My parents were so alarmed by this conversation, they jumped in their car and drove over to Portland. I took all my sick days and all my vacation time and for a month I went through a battery of tests to figure out what was wrong with me. My parents did the cooking and cleaning. They drove me to doctor’s appointments. They sat in my living room watching streaming television on my laptop and then went to a motel to sleep. After my month was up, I was called into my boss’ office. They told me I had to return to work immediately or quit. The day before, my immunologist had told me that she had no way of returning me back to a state of health. Her best recommendation was to move to Idaho and hope that the rest and clean mountain air would heal me. Her best guess as to what was wrong with me? An extreme sensitivity to mold. (Because Portland has the highest levels of ambient mold in the country – it was literally the worst possible place for me to live.) I quit my job, packed up a car’s worth of stuff (everything else I’d gotten rid of before moving to Portland – my apartment had been rented furnished) and moved to Idaho. This May will mark the sixth anniversary of the move to Idaho. I recovered some functionality after that terrible crash but I’m by no means well. ME has almost completely disabled me. I spend 80% of my time either laying down or sitting upright propped up by pillows. I can only move around an average of about 4 hours a day. That’s for cooking, cleaning, grooming, brushing my teeth, walking across the room to the bathroom. I’m lucky that I’m able to live a somewhat independent life (doing my own errands & chores) because some people stricken with ME can not even get out of bed. Some of us need to use wheelchairs and need assistance to do even the simplest of tasks like go to the bathroom. So I’m grateful for this small thing – that I’m able to live independently and that I do not need assistance to walk.
You’ll notice that even though this post is called “How I got sick”, I never really answered the question. The best guess is mold, which is why mold has been the driver for this particular narrative. But it’s entirely possible that in the next five, ten, twenty years, research will shed light on what ME is and how it affects our bodies. And when that happens, it may very well recast my entire disease narrative. Because the truth is that as far as ME is concerned there are no certainties, only questions. A lot of ME patients, myself included, will say things like, “if I had done, or hadn’t done, this thing maybe I would have gotten better”. We do that because it is a compulsive human habit to look at our lives narratively. The truth is that of course we do not know these things for certain. When it comes to ME, we are all fumbling around in the dark.
I’ll cover my long road to an ME diagnosis in a future blogpost. I’m feeling a bit exhausted today after writing this one. I hope that in some way reading about my story helps my fellow ME sufferers to feel less alone, I hope that it gives some understanding of what living with this disease is like to friends, family & community members. And, obviously, I am hoping that by writing my story I may find a measure of peace with it. That telling my story gives my life, my continued existence, some measure of meaning. Thank you all for reading my posts. Your supportive comments mean a lot to me.
*Myalgic Encephalopathy is the term I will be using from now on to refer to my disease. Those of us who have it are working to have the name officially changed from CFS to ME (which is what it is called in the UK).