I’ve had Myalgic Encephalomyelitis (ME) for 32 years. I was 24 when I first became ill with it after contracting a virus of some sort while teaching high school in East Salinas, California – just east of Monterey Bay.
The students I taught were the children of immigrants; hard working field workers of the Salinas Valley. This was Steinbeck country! Many of Steinbeck’s stories had been about the Salinas Valley. My students’ stories with their social injustices and economic hardships could have been taken straight out of one of Steinbeck’s novels.
Carnaval! Terri and her blond sister are in the middle of the picture.[/caption]In 1984 the school where I began teaching was surrounded by the fields our students sometimes worked in. I taught College Prep English and English as a Second Language to varying grades and levels of knowledge. My immigrant students were eager to learn the language of their new country, and I was eager to teach them. I wanted to unlock the barrier of language for them so they could rise to the successes they aspired to be. I had a passion for what I did, and it seemed I received so much more from the kids than what I gave to them. I was convinced this was what I was put on this earth to do. It was my purpose.
I understood the barriers of language because as a child I had been in a similar situation. I was raised in an assortment of countries in Latin America since the age of 5. When I first moved to Brazil, I didn’t understand why the cartoon characters on TV were speaking in a different language. My 5 year old brain figured it must have something to do with the electricity since the electricity was Brazilian and not American. Therefore, when the tiny black and white portable television set with rabbit ears was plugged in, it must have magically converted everyone’s words into Portuguese. It made sense to me at the time. I think we all have a need to make sense of the world no matter what age we are.
My parents were educators and wanted the experience of travelling while working in American schools abroad. And travel we did. We travelled to Iguacu Falls where we boated (I swear) right up to the edge of the roaring falls; we traversed and hiked the magical and mystical trails through the Machu Picchu ruins; we experienced the cosmopolitan city of Buenos Aires and the pampas of Argentina where we ate the best steaks of our lives; we travelled to spectacular Lake Titicaca which made us kids laugh each and every time we uttered the name; and we travelled into the high mountainous beauty and starkness of Bolivia.
As a child, I was in perpetual motion climbing coconut and mango trees (where I found out I was extremely allergic to mangoes), playing in the streets with the local children, swimming at the beautiful beaches, exploring the surrounding culture by participating in the local holidays and traditions, and eating the delicious cuisine du jour! There was always something exciting to see, hear, do, or try. It was a treat to the senses, with the exception of some of the smells at times due to the tropical humidity. The piles of garbage or rotting fruit along the side of the road in Brazil were no treat, and I’d breathe through my mouth in an effort to avoid the offensiveness.
When we traveled by car to some of these places, the humidity was so prevalent that our undergarments would not dry overnight after our mother’s tireless washing efforts in the hotel sink. Much to my older sister’s and my consternation, those moist garments were then hung out the car windows to dry in the warm air as we sped by 8 foot tall ant hills that dwarfed my father’s 6 foot, six inch frame.
With the noted exception of our flapping undergarments, which looked like banners of surrender streaming from all of our car windows as we travelled throughout Latin America, this was the idyllic backdrop to my childhood. I soon learned Portuguese, and in subsequent years, Spanish. Not many can say they started kindergarten in Rio de Janeiro and danced at Carnival, all in the same year!
There were many other places we experienced. I felt like I was a gypsy; although I had been born in the U.S., I was a child of the world.
My father occupied various jobs in administration in private American schools. Those positions ranged from vice-principal, principal, to Head Master /Director. My mother sometimes taught and other times stayed home with my sisters and I. We lived outside the US in four different cities: Rio de Janeiro, Brazil; Recife, Brazil; Lima, Peru, and, finally, Torreon, Mexico, before returning home to attend university because my grandfather was ill and dying.
My parents, years later when they first retired, moved out of the US and into the bubbling cauldron that was Medellin, Columbia during the time of Pablo Escobar’s infamous reign, but that’s a whole other story! Though Medellin was not a very safe place to visit, especially as an American, you’d better believe I travelled to visit them. I happily experienced the wonders of beautiful Columbia. I also witnessed the sad and violent dynamics of the drug cartels and political turbulence that had been inflicted upon their beloved country.
Our travels exposed me to life in third world countries which was both beautiful and sobering at the same time. We slept in mosquito netting in Brazil, which might have sounded fun from the perspective of a child except there was no air conditioning. Instead, there was plenty of high humidity and heat mixed in with the packs of lethargic mosquitoes singing their frustrated mosquitoey songs all night. We witnessed torrential rains and the subsequent floods and mudslides. When my mother worked as a social worker of sorts she experienced the poorest of the poor in the favelas of Rio. We saw people with all sorts of horrific ailments like elephantitis, leprosy, and horrible birth defects begging on the streets everywhere.
We observed death at an early age. I remember people who had been hit and killed by cars being left in the streets, covered in blood stained newspapers. I don’t remember how long they lay in the street, but as a child I can tell you it left an impression. I remember one time walking down a dirt road by my house and hearing people talking excitedly and motioning wildly with their hands. As I got closer, I could see people quickly digging out dirt by hand from what had previously been a gaping hole in the red earth.
There had been a deep cavity by the side of the dirt street which had been left open for some unknown reason. Some local children found the hole and decided to lower themselves to the bottom of the hollow to play, when the hole suddenly collapsed, burying them with heavy red earth. A growing crowd appeared and people jumped in to help with the digging. I stood for a moment hoping those kids would magically appear and then walked slowly on, moved by the knowledge that there was no 911 number or O for operator to put you in touch with police or fire services. Your fate was left to the randomness of whomever happened to be around at the time.
Tragedies like this seemed to be a daily occurrence. The pain and suffering I saw stayed with me, propelling me to work in the toughest schools where I felt I had the most to give and where the kids needed me the most.
We weren’t wealthy. In fact we lived in a tiny, noisy apartment, in a very tall building. Rio was densely populated at the time and the only way to fit everyone in was by building upward. We lived many stories up.
The electricity was shut off at certain times of the day because in 1966 Rio de Janeiro’s infrastructure couldn’t maintain consistent electricity distribution to everyone at the same time. Consequently, I was trapped more than a few times in the elevator of our highrise.
After getting stuck on my own in the darkness of the elevator at 5 and 6 years of age several times for hours at a time and having to be pulled through the trapdoor by strangers, I decided not to take those mechanical lifts anymore and made up a game. In order to save face about being too terrified to ride the elevator, I told my family I would race them to see who could get to our floor first or get down to the lobby first. I was happy to run up the many flights of stairs and it was OK with me that I never won the game. I felt I had achieved a victory, after all, by not being encased in that tomb for hours at a time. My family kindly played into my game and said encouragingly that I had gotten closer to beating them each time we raced.
It’s so odd that after having been such active child, adolescent and young adult that today, because of my illness with ME, like many I can’t even climb one set of stairs without enduring horrible consequences to my body. I now use a mobility scooter to get around outside of the house because of the costs of that post exertional malaise (PEM) – the hallmark of this disease – exert on my body. Even though I’m still that hyper kid inside, I now use a heart monitor to help myself with pacing.
I was trapped before as a child – in those elevators in Rio de Janeiro. Now I’m trapped within my body. It’s dark and scary, having a disease that neither I nor others fully understand. Those elevators of my childhood worked until the electricity was shut down. Likewise, my body worked until my power source was damaged, but this time, my body doesn’t just shut down for a few hours each afternoon. It shuts down every day all day long.
Little did I know that those white undergarments flapping in the wind outside our car windows which resembled banners of surrender were a foreshadowing of what was to be: surrendering to a chronic illness. “ Resistance is futile,” someone once said on Star Trek and they were so right. This illness is a landslide; the caving in of a deep hole, burying you neck deep in thick, immovable earth. There is no resisting it. You must move with it as it carries you off like an avalanche, or you won’t make it.
I’ve had a hard time coordinating my will to the reality of my body’s condition. My will continually tells me I can do things that I can’t without paying a huge price. The real data of the heart monitor helps temper my naturally boisterous and hyper will which wants me to do everything right now! I pay attention to what my heart rate is and what my anaerobic threshold is and I stop well below it in order to avoid spending days, weeks, and even months in bed recovering. Even then, it still happens from time to time when reading or thinking too much, or being overstimulated by sound or light which bring on my PEM (or Post Exertional Neuro-immune Exhaustion).
It’s emotionally as well as physically painful to be confined to bed day after day, week after week, month after month, year after year and to be kept from who we truly are in our souls. In my mind’s eye, I’m still that idealistic, carefree 24 year old teacher in love with teaching and working with my students. I still yearn to do my bidding through teaching, to be setting my students free through education, to have them be all they were meant to be. All the while, I long to be set free and be who I know I was meant to be.
There is such a need for medical help for our patient population. People very debilitated by this disease often live in isolation with no help. Conditions are so poor for our fellow sick community members that patients continue to commit suicide from the isolating despair of their lives and/or the physical suffering they can no longer bear. And no one comes looking for them anymore. No one is tracking our lives or our deaths. Deaths are also resulting from cancer or heart disease or some other opportunistic infection or disease our bodies can’t fend off.
We aren’t able to just walk into a doctor’s office off the street or into an emergency room and get the help we need. Many doctors don’t know what to do with us and, sadly, some want nothing to do with us. I went through four primary physicians who were open to taking on more patients at the time who rejected me as a patient because I was very upfront about asking whether they would work with a patient who has ME. I didn’t expend energy going into their offices. I simply talked to their assistants, informed them I had ME and they all called back to say that it wasn’t a good fit or that it wouldn’t work out. The fifth physician, much to my surprise, welcomed me with open arms. It’s sad that I or anyone in our patient community should be surprised when we find a clinician who believes us or doesn’t have a misconstrued view of what this disease is. He’s not knowledgeable about the disease, but at least he listens to me and believes me.
We don’t have any FDA approved medications or treatments. We don’t have official biomarkers. We have things the specialists look for like natural killer cell function, viral titers and the VO2 max test which shows how efficiently (or inefficiently) our oxygen is being used within our cells. A very low percentage of medical students ever hear about ME.
When I go to the E.R. for help, most times I don’t say I have ME unless I feel they are willing to truly listen to me. Mainly, I reveal only portions of my diagnosis: Common Variable Immune Deficiency, Orthostatic Intolerance, and other conditions which are deemed legitimate by the medical community.
There is a stigma attached to this disease. We’ve been ignored for many years by the federal government and medical community because they have felt that what we are experiencing is a psychological disease. Most of the research on ME has been done by individual non-profit entities, but that is very slowly starting to change. Our advocates keep slogging through, trying to make people listen to us to in order to acquire federal research monies which are commensurate with our disease burden. It’s hard to garner the attention in order to be seen and heard, though many people have tried for years.
I don’t live in a third world country anymore, yet often with this disease it feels like I do. Sometimes it feels like I’m an unwanted illegal alien in my own country without the ability to access the resources I need to survive. I expected much, much more of my country of origin. ME must be admitted to the big leagues and become a household name as readily recognizable as cancer, MS, HIV, or lupus.
I also feel grateful and count my lucky stars every day that after 26 years of having this disease, I somehow gained access to see one of a handful of true specialists in ME that reside in this country. Dr. Daniel Peterson of Incline Village, Nevada, has provided treatments and answers for the last six years that I never had before. I have learned so much and feel so secure in his extremely talented hands. I have ascertained that I have Common Variable Immune Deficiency which means my immune system is impaired and is susceptible to infections, and that my body doesn’t produce enough antibodies to fight off infection. I have become acquainted with the names of the many viruses that haunt my body.
I now understand, after 32 years of having this disease, how to pace as best as I am able while wrestling with my wily will. I have become knowledgeable about what my anaerobic threshold is. I have grasped what NK cells are and know what level mine are at after each lab test I complete. I have become knowledgeable about my brain inflammation and what causes it. I have become aware of numerous medications that are beneficial and the kinds of anesthesia for dentistry and surgery to avoid. There are so many other things I have been taught, and it is critical information that all patients should be privy to. I have met some of the kindest, most talented, and empathetic people I have ever met before. I love our patient community!
I understand the pain and suffering caused by living with a chronic illness and the loss of so many distinct parts of our lives: the loss of our lives as we once knew them, the loss of our identity and our productivity through work, the loss of our finances and financial security, the loss of our friendships, our spouses, and our connections to our communities and loved ones, and the loss of activities like reading, dancing, travelling, and going out to dinner. Many of us have suffered the loss of credibility and standing in our own communities because of stigmas attached to this disease. So many patients suffer these astounding losses quietly and in isolation. We must look to HIV and other diseases which were once marginalized, but have now found acceptance and resources for our inspiration. We must examine their blueprint for success so we, too, can shed our erroneous stigmas and gain the assistance we so desperately need.
Though I am no longer able to work and this disease has brought about many losses which are hard to bear, my world has expanded by virtue of being able to access a center of true medical excellence. The infusion room where I receive treatments has afforded me the possibility of getting to know wonderful patients and fabulous nurses who have become dear friends. Though I may not be able to travel yet, my world is expanding as well through the virtual friendships I have made through the chatrooms for ME. Having the opportunity to be treated by a doctor who is world renowned means getting answers to aspects of this crazy disease I never had before.
Reading the latest information online about the most up-to-date research helps encourage my hope that one day we will have an answer for everyone. The gift that I have received from this awful disease is that I am peeling back the layers of the onion that is my life. I am discovering who I am at my core. I am discovering that though I’m no longer able to work and produce in regular ways, I am valuable just by virtue of existing. I’m learning who the real people are in my life; the ones who, like my husband, show up consistently no matter what.
Many ME patients handle their losses in different ways. I am learning how to take lemons and make lemonade as best I can. The hardest time for me was not becoming sick, but letting go of what was and accepting what is for the time being. Everyone manages the illness differently and there is no one right way of doing so. My way of making it through the twists and turns of coping with this very difficult disease has been to find a loving, healing, and accepting church community through the Episcopal Church. They have supported me by sending someone out to visit me at home once a week. They have also supported me by becoming more aware of disability and “ableism.” It’s a beautiful thing to be greeted by love and understanding when you haven’t been. The sheer notion of acceptance takes my breath away. I want it to be like this everywhere for everyone. I don’t want anyone marginalized for any reason.
I understand that this may not be the road for many of you to travel. I feel everyone must find what works best for them. I can only share my experiences of hope and strength through what has worked for me. I discovered St. Perpetua through some reading I was doing and felt an instant connection with her world experiences, even though she lived 1,815 years ago.
I hold St. Perpetua as a symbol to aspire to because her credo was to not let suffering be a stumbling block, and I was suffering mightily at the time I discovered her. This illness felt like a suffocating noose around my neck. It’s easy to slip into a very low mood when focusing exclusively on all the things that are not going right and the hardships of living that our disease provides day-to-day.
I resolved, like St. Perpetua, not to allow my illness to be a stumbling block in my life and take all my joy away. I am fortunate to have a mobility scooter and a lift on the back of my car which affords me some independence away from home. I continue to seek out more information about this disease. I have found through a recent tilt table test that orthostatic intolerance is much more of an issue than I had previously thought. Compression pantyhose and medication designed to pump up my blood volume have enabled me to have more precious time out in the world.
I continually work on acceptance of my limitations and working within the confines of this disease. The more I resist and try to control the outcome, the more I stumble and the worse I feel both physically and emotionally. I’ve learned to ride the avalanche. That doesn’t mean that I won’t ever give up trying new things, learning, and attempting to regain some abilities. I won’t give up striving to help my fellow patients by trying to spread awareness, however and whenever I am able. I’ve learned a huge lesson, though it was a very difficult one. Simply put, my needs must come first always. That’s a tough one when we are taught to put those around us first. It’s about self-preservation and survival.
I have a very practical prayer out of the Book of Common Prayer from the Episcopal Church which helps ground me. I read it every morning whether I can get out of bed or not.
This is another day, O Lord. I know not what it will bring forth, but make me ready, Lord,
for whatever it may be. If I am to stand up, help me to stand bravely. If I am to sit still
help me to sit quietly. If I am to lie low, help me to do it patiently. And if I am to do nothing,
let me do it gallantly. Make these words more than words….
I do take these words and make them more than words found in an old prayer. I work on making them my daily reality and my mantra. You don’t have to believe in God to believe in the power and fortitude you possess within and that you are worthy and valuable and good just because you exist. I imagine these words on white banners displayed for the world to see, much like my mother did when we were little kids with all those wet undergarments that needed drying.
Unlike those flapping light-colored unmentionables of my youth, I want the world to see our disease and all of us, not as symbols of surrender, but as we are: as brave warriors living with a debilitating disease and proclaiming our worth, our hope, our solidarity with one another and ultimately our victory over this humbling disease.
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