I work a lot with other people’s stories. Here is a chapter of my own personal story.
I have been sick from inflammation, off and on, for the past six years. In 2015, I needed surgery because of digestive inflammation that was gluing my insides together. I spent years trying alternative treatments and lifestyle adjustments. When it finally came down to a decision about surgery, my doctors couldn’t tell me if it would make me better or worse, or the same, or if there might be other complications. Even with a lot of support, I was the only one who could make a decision, and I had to take a leap of faith.
When I first got sick, nobody could tell me what was wrong. Not knowing what was wrong also meant not knowing what would make it better. For so many people living with conditions, the early months and years are about constant seeking and struggling, tests and appointments, symptoms and websites and treatments and endless uncertainty. Without a diagnosis, I didn’t feel like I had a way to move forward. Without a diagnosis, I didn’t have a peer group or the opportunity to form an identity around what I was experiencing. After my diagnosis, I still had the “lesser known, harder to treat” form of a disease, so many of these things were still true.
Research is showing that people who live with undiagnosed conditions, or who believe that their conditions may be curable, do not adapt and adjust as well as those with permanent diagnosed conditions. I’m not suggesting that having a permanent condition is easy or fair in any way; my point is simply that searching for answers and help is often painful and isolating.
I quit my job before my last surgery. I didn’t have to do this, but I was ready to hit the refresh button on life. My partner and I sold our farm and downsized. I had my last day at work and said goodbye. Two days later, I went into surgery.
As I drifted into the anaesthesia, I experienced myself stepping through this hole in my life that sickness and stress had created. And though I had no idea what lay on the other side, I knew that everything was changing. A little over a year later, I am still discovering all the unanticipated, inexplicably wonderful things on the other side of that passage.
Over the years, illness transformed my relationships, my work and school life, my connection to spirituality, and my belief in myself. For years, living was hard, hurtful, confusing, and exhausting. My insides hurt. My bones and joints hurt. This expanded my understanding of what it means to be healthy or sick. But I was lucky, and the slippery ladder I was struggling to climb leveled out into something else – a diagnosis and then another diagnosis, a way of coping, a few things that brought relief, a lot of love and appreciation, the shedding of things that no longer served me, and a kind of acceptance of my altered existence.
Being endlessly, sometimes hopelessly, frustratingly sick changed my life, and in some ways made it much richer and more rewarding. Struggling in my body led me to understand where my physical self ends and where the rest of me exists. It caused me to step way back and think about what I’m doing in this life, and what will matter at the end of it and beyond.
Along the way, I met other sick people, who shared their stories and struggles and hopes and anxieties. Extraordinary people helped me heal in ways that I still can’t describe with words. I read a lot of books about illness and injury and disability. Working professionally with physicians and sick and disabled people, while being sick and disabled myself, helped me uncover new interests and practice a new work-life balance. I even came to understand something about what the experiences of physicians when they are doing the best they can, and it isn’t enough.
Before his death of a brain tumour in 2010, David Simon, MD, said:
“It’s an amazing gift, that I’m focused on this experience of mortality, and in the very focus of mortality, I feel like I’m progressively becoming immortal. And so I want to share this with people who want to hear this, because I really think that it will free us, all of us, to be more present, to be more loving, to be more creative. There’s no better preparation for exiting than living fully, living compassionately, and living lovingly. Treating each other as if we were aware that it wasn’t going to go on forever.”
In the days leading up to my last surgery, the phrase “living inside the prayer” began to entwine itself around and through me, wrapping me in comforting, trusting hopefulness even when the circumstances did not seem to support hope. I am a person of faith but not religious per se, so this was unexpected, to say the least. It stayed as my doctors become increasingly, cautiously optimistic that my surgeries had been successful. To live inside a prayer, I think, is to exist in a state of Grace with regard to all the choices and consequences that led to this moment, and those that will flow from this moment and that are outside of our knowing and our control. It is knowing that we are simultaneously vulnerable, protected, and free.
As far as we know, my digestive surgery was a success. I’m not cured and I never will be. I’m much better off at the present time, for having made the choices I made. I don’t know what the future will bring. But I’ve transitioned from a life of “there’s only so much time” to feeling “only, there’s so much time” and I’m just grateful for every day that I can participate and contribute and feel good. I feel compassion for other people. I am clear about my purpose.
In the middle of 2016, I developed lung inflammation. I don’t know why. My doctors don’t know why. But also, I don’t need to know it all right now, because I have slowly and haltingly learned to grapple with things one day at a time (and in half days when a full day is too much “future” to contemplate). And when that doesn’t work, I have people to remind me that it’s okay to freak out, to be vulnerable, to be sick, to need help, and to let things go when today isn’t the day. Tomorrow may not be the day either. It’s okay. It’s part of life. It’s the way that it is, so much of the time, for so many people.
As I post this, I’ve just been at the hospital for yet another test, and last week I got an injection in my hip, and I’m feeling pretty good. I’m in grad school. My partner, as always, is amazing. I’ve got family and a community around me. I’m excited about the future. Let’s treat each other exactly as Dr. Simon suggested – with love, and with awareness that everything is temporary.
If you are sick or injured, or if you love someone who is having these experiences, I wish you acceptance, support, and freedom from suffering.