I Was a Weight Lifter, and Then I Got Mono
When you can't sit up without a struggle, you rely on other people to survive.
At age 22, during my last year of college, I was obsessed with fitness. I taught group exercise classes five days a week on top of my coursework. I dabbled in bodybuilding and did some modeling in my spare time. Most of my days were spent at the gym, where you could usually find me asking someone to hand me a dumbbell. Now, seven years later, one of my more frequent questions is, "Will you hand me a bedpan?"
In 2010, I contracted a bad case of mononucleosis, which basically never went away. After months of uncertainty, I was diagnosed with a multi-system disease which severely impairs metabolic functions in the body. The disease is often referred to by two names, myalgic encephalomyelitis (ME) and, more patronizingly, chronic fatigue syndrome (CFS). (Because the latter is such a trivializing term, and not descriptive of the severity of the illness, most patients choose to ignore it. Instead, many of them prefer to use myalgic encephalomyelitis, a name used in other countries for essentially the same disease.)
I am one of the most obvious examples of how inappropriate the term chronic fatigue syndrome truly is: My symptoms go far beyond being constantly tired, as the name suggests and people often assume. Every day I feel intense nausea, debilitating weakness, extreme pain in my muscles and joints, and a slew of other symptoms that have left me bed-bound for more than two years now.
For half of that time I was unable to speak, eat solid food, elevate my head or laterally move my limbs. Now, as my health gradually improves, I can't help but reflect on all I have lost. My physique has gone from tan and muscular to flabby and ghostly pale. My muscles have atrophied and my days of flipping tractor tires have been replaced by my efforts to sit up in bed. And because I am often too weak and pain-stricken to care for myself, I require help from caregivers to perform simple tasks like brushing my teeth and changing my clothes.
Every morning I wake after a fitful sleep and feel around my bed for the pager to call my caregiver. Over the many months I've been stuck in bed, I've had at least three dozen of them, so on any given day it's not entirely certain who is going to answer my call. It could be my mother, an exceptionally dedicated woman who is nearing retirement age, yet maintains a full-time job and cares for me after work. My mother puts in long hours because I can't afford to pay for all of the care I need, roughly half of which she is unable to perform since she is either at work or too exhausted.
The people who serve as my caregivers keep my small world afloat, and for that I am incredibly grateful. But as much as I appreciate them, they can be difficult to work with. Some can be demeaning.
"Hey hon, you look cold. Do you want your blankie?" one caregiver asked me a few months ago while she was changing my sheets.
Because my ability to speak was limited, I gave her a thumbs down—a sort of nonverbal double entendre to both express my disapproval of what she said and to tell her that I was warm enough.
"Okay sweetie, just let me know when you're cold and I'll get your blankie for you," she replied in an equally saccharine tone. She then tucked the sheet around my torso, looked me in the eyes and said, "Aw, look at the baby!"
I can't remember a time when I felt so insulted or angry. But because I was too weak to retort, there was nothing I could do to diminish the torment I felt over my regression from independent man to perceived infant.
My frustration doesn't end with the baby talk. A few memorable examples: About a year ago, as I struggled to tell my caregiver I was choking on a pill by pointing to my throat, she got so confused and impatient, she blurted out, "Do you just want me to slit your throat?"
A few weeks later I was dismayed when someone visiting me discovered a different caregiver snorting drugs in my bathroom. I never saw for myself because I couldn't get out of bed, but thinking back, it always struck me as odd that she spent so much time in the bathroom and it was naive of me to think that the snorting sounds I heard were just her allergies acting up.
After her long bathroom breaks she would rush into my room and literally hold me as a captive audience to her drug-induced rants. This, of course, was only slightly more terrifying than the caregiver who talked to herself all day as she walked around my house. I didn't mind the mumbling so much—people inevitably talk to themselves, and besides, she had nobody to talk to except me, a man aphonic and bed-bound. But things started to get alarming when the conversations she had with herself went from innocent self-talk to possible schizophrenia. Her voice would suddenly rise, and she would shout something like "Stop! Come on, you're an idiot," followed by, "I know, I'm sorry." Because I could not properly communicate to my family, this caregiver's mental illness went largely unnoticed until she finally just stopped showing up for work.
Unlike other employers, I am simply unable to do background checks or even call my caregivers' references. I suspect this is the case for many disabled people with in-home caregivers—even if we are physically able to check a prospective caregiver's references, it is the last thing on our minds.
Despite the chaos of the unusual characters who have been my caregivers, I am lucky to have received their help. They have, after all, attended to my needs when I couldn't care for myself, and many of them did so on holidays like Christmas, and Thanksgiving. Some even came to work when their children were sick and needed care.
Now, as my health has started to improve, my reliance on caregivers has lessened. When I do need their help, communicating with them has become easier. My speech is still limited, but I have regained enough strength to communicate with my caregivers through messaging apps on my smartphone (which I recently wrote about in an Op-Ed for the Los Angeles Times). Now that I have enough strength and energy to use my smartphone, it is my main method of communication. In fact, I wrote this article entirely on my smartphone. On the rare occasion I can't get my message across using technology, I can often muster enough strength to quietly speak a few words—no doubt a welcome improvement for me and my caregivers.
In 2015, the National Alliance for Caregiving and the AARP Public Policy Institute estimated there were 43.5 million people in the country who had served as an unpaid caregiver, like my mother, in the previous year; at least 5.6 million of those people had cared for a loved one between the ages of 18 and 49, like myself.
Although I alone cannot afford their services, I need the help of paid caregivers. I have no regular income besides a meager monthly disability check; my savings is used up, and my mom has depleted most of her retirement account, so the money to pay my caregivers now has to come from government aid, which is often inadequate.
Throughout my convalescence I have relied on Medi-Cal, California's Medicaid system, which pays my caregivers minimum wage and allots me around six hours of their time each day. However, not many caregivers where I live—certainly no good ones—are willing to work for $10 an hour. So I pay them as much as I can afford—usually an extra two or three dollars an hour on top of what Medicaid pays them. But I have had caregivers ask me for $25 an hour, which is more than I can currently afford.
It's a paradoxical situation: I cannot afford to pay for the help I need because the people caring for me make more than I earn. I have no other choice but to rely on Medicaid, an unfortunate reality because the current state of the program is inadequate. But the truth is it may only get worse. The House just passed the American Health Care Act (AHCA), a bill that if enacted is likely to reduce, if not eliminate, vital Medicaid benefits such as caregiving services for people like me.
I may gripe about the indecencies of having people take care of me in my home, but if the AHCA becomes law I may find myself griping about having no care instead of just inadequate care. And while my situation could be worse, it could also be much better. Despite our country's tumultuous political landscape, I still hope for more government aid to ensure I receive adequate care and my caregivers are paid a fair wage.
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