Helen

May 23, 2021

A week ago I met an extraordinary young woman, and I’ve been haunted by her ever since. I feel both inspired by her example and saddened by her life. I admire her courage, but I’d rather be dead than have to live a life like hers.

Helen (not her real name) lives with her family in northern California in a comfortable middle class home. In her early twenties, she has lived with a debilitating illness that has almost completely paralyzed her since birth. She can’t speak, so to communicate she uses a specially outfitted computer that features a female voice. She has to have a caregiver or family member at her bedside or close at hand 24/7.

I knew when I called to make my appointment with her that our interview would be challenging for both of us. My job as a field interviewer for a social science research company allows me to meet and interact with a wide variety of people, including people with various disabilities, but I’ve never had to interview someone who couldn’t speak. However, since she has slight movement in one of her hands, she’s able to manipulate a toggle stick that is connected to her computer, and is therefore able to select from various options on her screen. She can’t type, but can choose from a menu of pre-set sentences, words, or letters.

As I sat by her bedside and set up my laptop, I reminded her of the subject matter of our interview while I also studied her face for clues as to how I might interact with her. Her eyes moved back and forth from me to her computer screen, but except for almost imperceptible movements of her hand and her head, her body was frozen as she lay on her side under her bed covers. Her caregiver had positioned her reclining body so that Helen would be facing my direction. Her lips were open the entire time, exposing a mouthful of crooked teeth and causing her Latina caregiver to have to regularly suction the saliva from her drooling mouth and from the tube in her throat.

Yet though her face was expressionless, her “speech” was upbeat. When I asked how she was doing, she replied through her computer that she was “fabulous.” I didn’t believe her, but understood that she was probably being politely positive.

Her bedroom was decorated with cheerful photos, sayings, and artwork. There was a pinup photo on the wall of a handsome young man, probably a movie star or rock star with whom I am unfamiliar. It was clear that her family has surrounded her with loving and optimistic images in order to keep her spirits up.

Usually I hand my laptop to the respondent and it takes them about 45 minutes to answer the questions for the tobacco and health survey. But with Helen I had to read the questions aloud to her and record her answers, and with her physical limitations it took almost 3 hours to complete the interview. Obviously she has never smoked, so her answers saying no to the smoking questions were predictable. But what surprised me was her rosy response to some of the physical and mental health questions.

When I asked her to describe her physical health as either excellent, very good, good, fair, or poor, she chose excellent. Ditto for the question about her mental health. Again, I didn’t believe her, but dutifully recorded her answers. Yet she was relentlessly positive throughout the interview, causing me to wonder whether she was faking her cheeriness out of habit, denial, or social conditioning, or whether she really believes that her life is as hunky dory as she claims. I’m sure that she gets discouraged as we all do from time to time, but with me at least she kept up a good verbal front.

Her caregiver told me that Helen is intelligent, curious, and enjoys surfing the internet. I mentioned to them both that Helen reminded me of the renowned British physicist Stephen Hawking, who also had similar physical constraints. But while I projected a lively social facade, my “happy face” belied my pity for a fellow human being who is imprisoned in a body that is a permanent straightjacket.

I don’t know how Helen really feels about her handicap or about the quality of her life. She’s fortunate to have a loving, supportive family and a nice home. But it occurs to me that, in a way, she has no viable alternative to being so positive. What good would it do her to be depressed all or most of the time? She really has to be cheerful while living with her disease, because otherwise she would suffer and be miserable. And since she’s been trapped in that body since birth, she’s never known a better quality of life, though she can see that her family members and others are not as deprived of freedom as she is.

I would be terrified and claustrophobic to be so totally constrained, and would probably insist on escaping my confinement through assisted suicide. Then again, I’ve only known good health, and so if I were to suddenly experience paralysis at this late stage of my life it would be shocking in a way that Helen has had a lifetime to adjust to.

Even so, it must take a lot of psychological and emotional energy and strength to confront what anyone would acknowledge is a most difficult life. I admire Helen’s fortitude, and am grateful to her for showing me a fine example of a courageous spirit in spite of what must sometimes feel like a hopeless fate.

A few days after I met Helen I went hiking with friends at the spectacular Point Reyes National Seashore. It was a sunny but cold and extremely windy day, and a tiring hike. But I thought of Helen and what she is missing, and I thought of my mom who is also bedridden and unable to enjoy the natural beauty and freedom that I so often take for granted. And I thought how trivial my challenges are compared to those of Helen and my mom. My occasional complaints are ridiculous and petty compared to what so many other humans have to contend with on a daily basis. Of course, that realization won’t stop me from feeling frustration and self pity at times.

But Helen is a reminder to appreciate my good health and freedom while I have them. I can only hope that if I ever have to face insurmountable odds, I can do so with the grace and resolute cheerfulness that Helen displays.