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)!
Here For You offers a thoughtful selection of Compassion Packages to send to family and friends living through life's toughest transitions. Our practical gifts range from curated household essentials to customizable sets of self-care items, all prepared with a personal touch.
Kellyn, I have read your post several times and it touches a nerve in me that I wasn’t quite sure existed and didn’t know why it existed. I am so sorry for Your loses and how much it has affected your young life. But I can really relate to your feelings and you have such a beautiful way of expressing it. I saw your father getting sick but I think at the time it was easier to not get too involved or ask too many questions because you don’t know how somebody else feels. Now that I am experiencing a very similar disease as your father did, I have opened my eyes to try to put myself in somebody else’s place so I can be of some comfort and support in the difficult times. I’ve struggled for a long time with my illness but I often didn’t share everything with my family because I didn’t want to hurt them or make them feel bad for anything they may have done or said. My kids also had the burden of dealing with their fathers illnesses. He often lived in his own little world of denial which made it easier for him to cope. Now that he has very recently passed away because his body just couldn’t take the stresses of his serious diabetes among other major medical issues, I realize how affected I was by his illness. And my kids too. For years my biggest fear was to be my myself with Michael when he passed to the other side and there was nothing I could do to prevent it or help. That is exactly what happened and now I have some degree of relief that I was with him just to hold him in those last moments. I now realize that my kids were also traumatized by knowing how sick he was although they tried to deny it also.
Kellyn, I feel a very large connection to you and your mother. Although our situations are different, no two situations are exactly the same. But the hurt of losing a close family member way too soon is part of grieving. I have always felt that talking about my feelings was very helpful for me, but I also know that some people are not quite as comfortable sharing their most intimate feelings. I thank you for forming this blog because it helped me to share some of my feelings. I live with physical and emotional pain every day as I know your dad did. And now I know the feelings of losing a husband. I am angry that he refused to take care of himself. I am hurt because it was too hard for him to acknowledge my medical problems. And I am somewhat released because I don’t have to worry every single time I walked into my house. I hate to think of it as relief but if I’m honest, it is relief. And I am angry when I see the hurt that my kids are feeling. They are too young to go through this also. Jonathan is 24, a little younger than you when your father passed.
I hope this long blog made sense to somebody and maybe even make somebody know that they are not alone in the feelings of lose. I think about you all the time and I wish you well. Big hugs to you and your mom. And of course the rest of your family also.
When the compulsions came back instantaneously after Alison was diagnosed I knew I couldn’t be alone – and with just a little asking around I realized that quite a few people do it…
I look forward to hearing some of the strategies next time I see you :-)
And yes – I too find that being busy and having a full day is helpful.
I do the microwave thing too!! Since my cousin’s death from cancer in 2016 and after your sisters death last year my health anxiety has become out of control. When young vibrant people pass away it just ruins me. Whenever anyone calls me I panic about what bad news it could be. Every time I or my family members experience symptoms that are out of the norm I automatically assume the worst. Headache? Brain tumor. Back pain? Kidney or ovarian cancer. Tingling fingers? ALS. I am taking meds (which help some) and seeing a psychogist – I’ll have to share with you what I’ve learned and some techniques she taught me next time I see you. Honestly though, being really busy is the most helpful thing for me. The less opportunity my brain has to wander, the less often I find myself lost in health panic.