The Solace of Shared Suffering

Today is my 4^th “Rebirth Day”. Four years ago today, I had my stem cell transplant to treat and possibly cure my acute lymphoblastic leukemia (ALL). I had expected to get back to something close to normal in a year or so. It’s what everyone said would happen.

But I wasn’t back to normal in one year. Or two, three, and now four years. Yes, I am somewhat functional. I have certainly improved since those dark days of complete reliance on my caregiver/boyfriend for even the most mundane “activities of daily living”. But I still struggle. I have chronic GVHD (graft versus host disease). I take a lot of meds, I have dizziness, and my legs are tight and stiff and can’t do the things they used to. Some of these meds make me immunocompromised so I must mask up and avoid crowds.

Over these years, I have searched for and read patient stories - looking for people like me. I needed to find stories of hope but also of shared experiences. I was searching for fellow sufferers. But many of the stories I found glossed over the hard parts. They wrote about their disease, briefly mentioned their treatment, and then fast forwarded to the happy ending. One man who lived in a snowy state and had undergone treatment like mine, talked about how he went skiing six weeks after his transplant. Other people wrote about what they had learned from their cancer and how their lives were enriched by it. I read one story where a man said he “made friends” with his cancer. I did not learn any valuable lessons from my leukemia. Either it was a lousy teacher or I was a lousy student. There was no big epiphany, no great enlightenment. I didn’t personify it as either friend or enemy. It was a freakish malfunction of one of the billion trillion reactions that go on in our bodies every second of every day. Where could I find people I could identify with?

I thought maybe I would find some solace by joining a support group. I briefly joined an online leukemia group hoping to find people like me who were struggling. When I say “briefly”, I mean I quit after one time. There were about six people in the group. At the beginning of the session, the group moderator asked everyone to briefly introduce themselves for about five minutes. Several people told their stories and politely stuck to five minutes. And then it was time for a man whose name I forget but we’ll call him “Talkie McTalkerton”. He started to tell his story, in detail. Lots of detail. He regaled us with how much all the nurses loved him and what a positive influence he is to all those around him. He was definitely a spotlight seeker. He talked for twenty-two minutes. By the time he stopped talking, there were only a few minutes left in the session. It was my turn – finally. So, I briefly told my story and ended with saying that I was feeling angry about what happened to me. Well, “Talkie” certainly couldn’t let that go by his bubble of positivity. He barged in, “I never feel anger. That is a negative emotion, and it doesn’t do any good”. I felt like a little snail and retreated into my shame spiral of a shell. The moderator then said, “Well, we are out of time. I actually had ‘dealing with feelings of anger’ on the topic list for tonight, but we’ll get to that next time.” There was no next time for me.

I moved on to an online meditation group offered by the UAB O’Neal Cancer Center. While the group’s focus was meditation it doubled as a support group. The core group was cohesive yet welcoming to newcomers. They got me through. Everyone in the group was open and honest about their struggles but also about finding joy in everyday experiences. Yet, I drifted away as I became busy with side gigs, physical therapy, and going back to the gym.

That gym I went to was the Lakeshore Foundation. If you're not familiar with Lakeshore, it is a paralympic training site that serves people of all ability levels. If you want to get some inspiration from true warriors, Lakeshore is the place to be. The people are a mix of veterans with lost limbs, people recovering from strokes, people with chronic, debilitating conditions, and kids with disabilities. When I first started there, I needed a rollator to get around. But I didn’t feel self-conscious as I was surrounded by people in wheelchairs and scooters, people with walkers, prosthetic limbs and canes – people for whom no barrier was too great to keep them from doing the work of getting stronger. Sometimes I see the pain in their eyes, but it’s more often determination. I feel at home there.

Recently, I joined a BMT (Bone Marrow Transplant) Facebook group. It’s for anyone who has had a BMT for any reason and for their caregivers as well. The suffering expressed here is immense. I feel akin to many of the people here who seek hope but also acknowledgment of their fears and struggles. There are people who have relapsed and are facing a second BMT. People who aren’t going into remission. There are people who, like me, are making it but are having a hard time coming to terms with a diminished life. One young man in his 30’s is struggling with his self-image as he tries to start dating again. But he feels unattractive because his hair isn’t growing back; in place of his once strong muscles, is lax skin. He doesn’t want to settle for a “new normal” – he wants his old normal back. I get that. There’s a single mom who struggles with being on disability. It doesn’t pay the bills, yet she doesn’t have the ability to go back to work. Others, like me, have GVHD, which is a constant battle. If it sounds depressing, it’s not. The support and encouragement that people get from others who have experienced similar challenges is heartwarming and hopeful. It's a place of great compassion and true empathy.

What I’ve come to realize is that if I wait until I am “all better” I will never do anything. I have battle fatigue – but I’m also battle hardened. So, I will figure out ways to become a whole person again and not just someone defined by a disease. We’ll see how it goes.

Beth Kitchin PhD RDN