The hardest part of living with and loving someone with cancer is just plain being normal. Cancer is, quite literally, all-consuming. It is that puffy cloud that covers the sun on a warm balmy June day, whispering “I will never blow away.” The sun may peek out for a minute or two, but just as you feel your skin begin to warm, it is gone and there you sit in shadow.
It is exhausting. While you are doing your very best to help yourself and the people in your immediate circle carry on, you have the added burden of making everyone else feel better about your loved one having cancer. Why is this our responsibility? My husband can fly a plane, run a business, play the trumpet, make things explode, run a gas line, plumb a toilet, ride a unicycle, fix a car, play ice hockey, unsnarl a fishing line, and pour a martini so perfectly that its curved meniscus rises above the rim of its chilled glass without spilling a single drop. Sooo, make you feel better about his having cancer? Sure- why not. He can’t help it. He loves you all so much. Making you feel okay gives me anxiety. I had my first real experience with an anxiety/panic attack the first week of Kurt’s treatment when, surrounded by loving family members who had nothing but the best of intentions- I felt like I was going to suffocate. Sad, kind gesture after sad kind gesture was so overwhelming that I needed out... Immediately. I’m working on that. I will try to allow you to be sorry for me without my feeling vulnerable. I am really, really bad at that, I must admit. Yes, we are still so, so tired. I see my children immerse themselves in school and sports and friends. Well, kind of. My son’s grades have slipped and my daughter needs to rewrite her college essay; the one she wrote in September is no longer relevant. She keeps putting it off because it makes her cry when she thinks about it. But they have friends- really good friends. Monday mornings are the hardest for me. I have a million playlists and music aps for my long commute to work, but usually it’s just cancer, cancer, cancer, cancer, cancer. I used to cry every morning. I’m working on that, too. Songs that I used to never think twice about are now loaded with new depth, forcing me to emote. So, yes one of the things that always grounded me, that defined me, now reminds me that we are a long way from normal. I can say that there are some things that I thought would be hard to accept in our need for normalcy that have been easy- well at least for me. We have all adjusted to the ‘tape hat.’ Sure, it still gets double takes and an occasional question or two, but we are settling into its arduous routine. I’ve gotten proficient at applying and trimming the arrays so that if I need to change them before I leave for work I can manage. If I am shuffling around in socks, have trained myself to touch something before my husband so that I don’t get shocked. (Yeah, that happens). Kurt has developed a system for carrying his apparatus and extra batteries. Losing hair was not a big deal as it was getting shaved anyway. Did I mention Kurt looks great without hair? Normal? It is going to take some time. We are putting some coping strategies into place. Some need work. My goal moving forward is to push for that normalcy without making things weird. That is the trick. How do we have normal, how do we work on normal without creating something forced? This journey is still new and we are all still coming to terms with so many drastic changes. As time goes by, that familiar warmth will return. The clouds may never completely fade, but I can hope for longer patches of sunshine.
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AuthorKurt, Margo, Georgia and Spencer share their thoughts about living with and loving someone with brain cancer. Archives
April 2019
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