Earlier this summer I posted on Instagram that it was my dad’s birthday. I honestly haven’t been thinking a lot about my dad - my head and heart are too wrapped up in the loss of my sister. Right now, I’m not a great model for managing multiple losses, as I’ve really just put my dad on the back burner. I don’t allow myself to think about him because I can’t manage handling these two losses simultaneously.
Alison, my dad and me in the summer of 1983.
My dad died when I was 20. He had been sick my whole life - each year marked with at least one major hospital stay. He was in the hospital for all sorts of reasons - blood infections, heart issues, a liver transplant, and broken bones. When people ask how he died I talk about autoimmune related illnesses and organ failure. Doctors couldn’t explain why his body attacked itself, and for 25 years he lived with constant physical pain and often many other uncomfortable ailments. When he died he was waiting for a dual kidney and pancreas transplant.
My parents in the early 80s. This is when my dad's health was still good enough that he could run and play sports (albeit - not well - Shoecrafts are not particularly athletic). I never saw my dad move faster than a walk.
As a child I had some habits that I picked up that helped me cope with the unexpected. When he died they disappeared. When my sister was diagnosed with cancer in 2016, most of the habits returned immediately, though not with the same intensity. They were ready and waiting. Unwelcome but so incredibly familiar. I know that my behavior wasn't abnormal. Many people living with the uncertainty of illness, either their own or that of a loved one, develop their own rituals and behaviors to try and make life predictable and manageable.
Compulsions and control. These are things that I would do to give myself a false sense of security that I could control my life and my loved ones' health. I was constantly having the mental conversation, “If I do (insert strange behavior that had no impact on anything) - my dad/sister will survive." Tasks included seemingly mundane everyday activities - like hopping along a row of rocks on a hike without falling, shooting a basket six times in a row, turning off the microwave before it beeped, getting the clothes out of the washing machine before the song on the radio was finished. The sense of relief and the dopamine hit that came from “saving” my family member was intense, and I constantly craved that feeling. Sometimes after successfully completing a task, I'd assign myself a new one immediately. The relief short-lived before the familiar panic of waiting to see if I could successfully complete another one. The panic of not achieving the task was heavy, a part of me believing that my failing to kick a soccer ball and have it stop on a specific brown spot of grass would result in my dad dying.
Hyper tuned in on voice tone. My parents didn’t share the complexities of my dad’s health with me. My sister was extraordinarily private about her cancer and didn't want anyone knowing about her diagnosis. I understand their rationale. How do you decide how much to share with child? My sister didn’t want to talk about her cancer because she was scared and seeing other people scared would only make her more terrified. I am obsessed with tone. I always assume someone is hiding something. Part of why I hate answering the phone is that I spend the first 15 seconds analyzing the voice of the caller. What bad thing has happened? What are they trying to hide from me?
Unable to make long-term plans. When my sister was diagnosed I had terrible anxiety when thinking about the future. Invitations to weddings made my gut twist. How could I possibly RSVP? Even more benign appointments - like dental cleanings 6 months in the future would make me upset. Sometimes buying something in bulk, like a big box of Costco Q-tips would make me wonder, “what will my life be like when this box is empty?” When my dad died in 2004 I finally felt free from my fear of the future. For the first time in my life, I thought about what life would be like in 10 years and felt secure that the people I loved would be there. I incorrectly assumed that I had paid my dues and would be safe from future heartbreak. Now I know that I am not safe. The future remains frightening.
Debilitating panic when you can’t reach loved ones. This is not uncommon, but I think it’s way more common for people who have had reason to be scared for their loved ones’ health. Growing up I would often not get through to my family (it was the 90s and life pre-cell phones) when I was at a sleepover, and then had to manage the appearance of being a normal kid when really I was trying to put the lid on a simmering pot of fear and the idea that my father was dead.
My father and brother in the late 90s - my dad's face swollen from steroids.
A recent Terrible, Thanks for Asking episode explored what life is like for a young man with terminal cancer. He lives weeks at a time between his scans, the relief of good news short lived because the next scan is just a few weeks away. Many people are living between scans and doctor's appointments. It is an incredibly difficult way to live.
I don't have answers for those who are living this way, though I know that for me, I always find comfort in connecting with others who are facing a similar situation. Facebook hosts support groups for all types of illnesses and conditions - a simple search will probably give you multiple to choose from. A search of Instagram hashtags of the particular illness that is affecting your family can also connect you with folks around the world. If you are a caregiver it is also important to give yourself space for support. What you are dealing with is traumatic, even if you are not the person with the diagnosis.
For those who are sick, in treatment, have stopped treatment, or living between scans I have found great insight in those who have lived with their own scary diagnoses. Writers like Kate Bowler and Ted Rheingold. I devoured Nina Riggs' The Bright Hour and Paul Kalanithi's When Breath Becomes Air. A disclaimer to readers that Kate is the only writer in that group who is living.
Lastly, though it won't be out until late September, Claire Bidwell-Smith has a new book coming out on anxiety (appropriately titled, too)!
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