In November 2012, because of medical issues that I am suffering from, I had to turn my driver’s license in to the DMV. That may not seem like such a huge issue at first glance – but it has now been 18 months that I have been unable to drive. My wife works a graveyard shift, four tens a week, and so is effectively unavailable to assist me on those days. We live about four miles out in the country, so even if I wanted to use public transport, there is no way for me to access it. What this has meant, ultimately, is a major lifestyle change. I used to drive everywhere – to my job in Calistoga (which I had to quit), to writers’ workshops and readings all over Sonoma County, to visit with friends for coffee, etc.
One of the biggest losses was my Zen sangha. I belong to the Russian River Zendo (RRZ), located in Guerneville, an hour’s drive from my home. I have managed to deal with my transportation issues by various means: I have friends who provide rides, I save up tasks and errands for my wife’s days off, and I also found two wonderful senior citizens who I hire occasionally to be my drivers. But I pay them by the hour, and to have a regular commitment at the zendo, with the drive there and back, plus the time for sitting and service, is simply beyond my financial reach.
Thankfully, another resource appeared. Priest Beata Chapman, who I knew from RRZ, invited me to join her Suffering & Delight group, an online class/sangha that is for those dealing with chronic physical and/or emotional pain. Five of us meet via video conferencing twice a month, to sit zazen together, and then have a dharma talk/class. It has been a wonderful respite for me, to once again have sangha that is easily accessible.
One of the recurring themes in our group is the invisibility of our illnesses. All of us, at first glance, appear to be fine. Yet each one of us is suffering from some kind of condition which makes our life very difficult. Beata has used, a number of times, the term mundane anguish to describe what we are living with. Our illnesses/conditions are so much a part of our daily existence, that they have become routine, normalized. And each one of us does our best, as we get up each morning, to put on our best face, to smile, to get through the day, to do the most we can given the limitations of our illness.
Last week, I attended a day-long conference with about 60 people in Fremont. I was with four people I knew; the rest were strangers. Because I have a service dog, people are always fascinated with her, and drawn to her, so I always spend my first moments in these types of settings fielding the questions and interest. Everyone wants to pet her, which gets frustrating since she is working, but I typically will allow a brief hello.
During the course of that morning, at least eight people said, “Are you training her?” Ripley’s vest clearly states “Medical Alert Dog” and “Please Ask Before Petting: Working.” It does not say “In Training.” But because I do not appear to have a disability (i.e., I am not in a wheelchair or blind), and I am smiling and friendly, everyone assumes I am absolutely fine. I have no medical issues. I must be training her. Towards the end of the day, I had two of my seizure episodes at the workshop – what it looks like from the outside is that I slump forward in my chair, stop speaking, check out for several minutes. When I come to, I am slow to rise, and unsteady on my feet. It happened right in front of a group of people, but no one responded or asked me if I was OK. Only one member of my club noticed, watching me with eagle eyes as I re-entered the main room. I was leaning against the wall as I walked in – that’s how off-balance I was. I had another episode right after, and a third on the drive home. Other than my friend, only one person said something to me, just as we were packing up to leave: “I hope you feel better.”
In anger one day, after a particularly exasperating episode with someone in the public arena, I said to Sabrina, my wife, “What do I need to do, wear a sign around my neck that says, ‘Disabled’?” Because it isn’t just the loss of the driver’s license. I must deal with the fact that at any moment, without warning, I collapse. Sometimes it happens once a week. Sometimes it happens ten times in one day.
A friend of mine shared this story. Although always presenting a bright and cheerful disposition, she suffers from chronic and often debilitating pain. Because of this, sometimes walking can be difficult for her, and she has a handicapped placard. She recently went to an event with a friend, which involved a fairly lengthy car trip. Sitting in the car caused her pain to escalate, to the point that she was extremely uncomfortable by the time they arrived. At their destination, my friend said, “We can park here in this handicapped spot; I have a placard.” The woman driving said, “Let’s leave that for someone who really needs it,” and proceeded to park more than a block away. My friend put away the placard, did not say anything else, and walked the whole distance, paying dearly for it the next day. And she said to me, “I don’t feel the same way about that woman now. She didn’t see me.”
Not long ago, one of my friends said something to me about what a rough year I had had. And I thought, “Have I had a rough year?” It took me a minute to realize, oh, she means all of this I have been dealing with – the loss of my license, the escalation of the attacks, everything. I forget. It has become so normalized, so part of my daily existence, that I simply cope. Because what are the options? I could curl up in a corner in my bed and weep, feel sorry for myself. Or I can keep trying to live my life, as best I can. Mundane anguish.
I realize there are many, many people out there who are dealing with their own invisible pain – whether it is physical or emotional. I have learned to trust my intuition, and when I sense that someone is hurting, I ask. Better to be told, “No, I’m fine,” or even risk a “Mind your own business,” than to miss the opportunity to witness and support another’s suffering. Because it is not always easy to advocate for that support yourself.
And I may, eventually, need to get that handicapped placard. Sometimes I can’t walk from the car to the store, without leaning heavily on Sabrina’s arm. I pray I will not be judged if and when that happens.