I am grateful for the opportunity to submit my thoughts in support of those struggling with chronic illness. I wish to tell my story, here as well as in other venues, because often people, especially men, find it difficult to speak of illness, much less an illness so erratic and “invisible” as mine. Also, frankly most who suffer from chronic illnesses are often too tired to tell their story. They’ve told it countless times to friends, family, co-workers and medical professionals; some believed them, some didn’t, and few have completely understood.
I have had to learn, sometimes to my great chagrin, to ask for help, admit to limitations, to reassess just who I am when stripped of most of the social identities that pass for solid ground in our society. They have, too.
Before I left work in 2010 due to my second pneumonia in three years, I had struggled for seven years to work consistently while having undiagnosed CVID (common variable immune deficiency). For seven years I struggled with fatigue, chronic respiratory issues, and increasingly severe sinus infections. I had a terrible attendance record at work, and was three times demoted to part-time due to my inconsistent health. Even at part-time status, I was increasingly unable to maintain the hours expected of me due to my declining health. Had I not been working for a non-profit agency with a great deal of compassion, I would have been fired long before I was laid off. My episodes of illness and fatigue stretch back further, from frequent bouts of fatigue and sinus infections in high school, into the late 90s, when I was frequently absent from my job as an Airline operations supervisor. I have struggled a long time with trying to live and work what most consider a normal life, but as my health has worsened, on most days I struggle to find the energy for the simplest of tasks. Some days even getting out of bed is impossible.
Disability is devastating to any person, and to those who love them. There is not an employer, co-worker or friend or family member who has not witnessed and been affected by my illness, who has not been subject to my repeated last minute cancellations of plans, absence at birthday parties and other life milestones. My life has been disrupted completely by this array of illnesses: my wife and I have given up our dreams of parenthood, and have lost our home, I have had to contend with the loss of my identity as a teacher and dreams to be of service to the underserved, and my independence has also become more fantasy than reality.
I am currently on disability, for which I did not apply for lightly, or with any gusto. It is an arduous process for a relatively small monthly sum in financial compensation. It does not keep me awake longer per day, restore to me my career and identity, or give me enough energy to pursue the lifestyle of activity and ambition to which I am accustomed. Countless others have stories of suffering and hardship, none of which can be reduced to stereotypes that temporarily appease ideology or investor, or make it easier to pretend that there is no human cost to legislation. It does not change the reality of my illness and daily struggles; what it provides is a lifeline, without which only make it harder for that struggle to continue with basic needs more or less in place. That situation is getting worse.
Just in the last year I have developed permanent sinusitis, vision deterioration as well as cognitive and balance impairments. Within the last year I have also developed vision loss that prevents my driving and carpal tunnel syndrome. I have always worked hard, whether 60 hours a week as an FAA certified ramp supervisor or as a teacher in a homeless shelter in the inner city, where I took less money than I could have earned teaching college, in order to be of service to my community. Mine is only one story of someone who has had to contend with the losses we have accrued – the loss of our home, the loss of the children we might have had, and the loss of my identity as a contributing member of the community.
Before we lost our home, we had bled through our savings, retirement, 401 (K), my inheritance, money from an online fundraiser and help from family. Disability and chronic illness are frightening experiences, as is the process of asking the government for assistance. Given the loss of independence that comes with illness, and the stigma attached to admitting one needs help, the fact that to many people these illnesses, being invisible, unpredictable and not “as severe” as cancer or PTSD, only increases isolation and self-doubt.
Yet there is never lack for opportunity, even when one’s body is offering few predictable choices. There is opportunity to let go of who you thought you were, and to focus on who you are today. Nothing that I have just shared has been cry of self-pity, or of resignation. I am still here, still ambitious, still capable in many ways as I have always been. However, what once took me an hour or a day to accomplish now takes several hours or a week, or longer. I hate that; I also accept it, fully. As a former writer and teacher, I have lived most of my life in the mind, with barely a notice of my body. Today my body calls the shots. I listen, I do what I can, and I appreciate—with both grief and wonder—that in many ways I am a new person. My illness has taken away every material security I’ve had with the major exception of my marriage; it has given me a chance to see the world and my life in new ways, and an opportunity to see the struggle of others with more compassion and common sense.
I try to keep to a daily schedule—of tasks, reading, people to call or email, on top of my daily office as a Zen monk. I try to be mindful that I most likely won’t accomplish everything on my list, but I think having some structure helps—it can often be the only predictable part of my day. Accepting my limitations has allowed me to go easy on myself. Guilt has no place in a life where you cannot do or be in ways you always assumed defined you. Humor is a good replacement, as is taking comfort in the successes of my wife and friends. I share in their ambitions as well as in their losses, in ways that were maybe impossible before I got sick. That doesn’t make me a saint: it makes me someone who accepts what has happened, and been open to the idea that if I can fall apart unexpectedly, so can anyone, and I’d like to try and be there if they do.
Meditation helps, as does painting. For a writer, losing focus and attention is frightening. Thankfully I’ve been able to play around with some more tactile art—drawing, pottery, painting—that not only has helped me express myself in new ways, but also takes the sting out of not being able to write as I once could. I won’t lie: had I not already had the experience of having to let go of cherished ideas about myself, no longer seeing myself as a writer would’ve been shattering. I know there are people who don’t have some of the opportunities and support I’ve had that have allowed me in some ways to turn loss into some positive change. The main thing anyone can do who suffers from unpredictable minds and bodies is to remember that you are still here. All those self- images hopes you had no more defined the real than being sick is your current disabilities. I know that sometimes it feels like living without a net, or reliable solid ground..it is, but it is also a chance to live despite the pain, in new ways not tied to old ideas of what did or didn’t give you value. It’s hard, but maybe you can try to see the value of living doesn’t depend on accomplishments; you can live a rich life from the couch or bed as well as from a cubicle or office.
It is my hope that by sharing my story and trying to help people with chronic illnesses, I can bear witness to what this mercurial state does to people and how they can rise above their limitations and pain and fear. I’m not calling on magical thinking. The day to day efforts are hard and the loss of some of one’s dreams is true and powerful grief that no one should work through alone. But you are still here, and still have choices. We can’t always—and don’t always—make the best ones. But remembering that we do have those choices can make us feel less alone, and less dependent upon someone else to define us.