I’ve taken a year-long vacation from blogging. During this time I cared for a family member with severe dementia, and nursed him through to the end-of-life in hospice. It was the culmination of four years of caregiving filled with anguish, love, and major health care advocacy. It was a complete 180 being a caregiver instead of a patient. Focusing on Alzheimer’s, a disease for which there is no cure or treatment, presented its own separate challenge and fight.
It was hard to stop blogging. I was addicted. But I needed to cut from my life many things I loved in order to focus my attention, almost 100%, on being a caregiver. Ultimately, it has been good for me to not focus so heavily on my own illness and on young adult cancer. I have discovered other parts of my identity that lay outside of my own oncology experience.
I’ve decided to resume blogging, though with a lot of new work on my plate, I’m modifying my approach. I might post less frequently and have decided to discontinue the comment section. I’ve loved all the dialogue created here over the past three years (just dive into the archives for some juicy conversation). I hope you will continue to link to my posts on your blogs, facebook pages, and twitter feeds, where you can moderate your own heated and fruitful debates about young adult cancer issues.
As always, I continue to respond personally to every email I get from a cancer patient or loved one. You can find my email address on the contact page above.
Wishing you strength, smarts, and maybe a bit of vengeance on your cancer journey.
I went to high school with a guy named Ram Gordon who is now a cardiologist. He has a great post today on the New York Times site in which he reminisces about watching ER with his roommates as a med student 15 years ago.
His post made me remember when as a kid and my whole family sat glued to St. Elsewhere on Wednesday nights, watching Mrs. Huffnagle’s death by hospital bed. Oh, Ed Bagley Jr. before his eco-trip. Oh, hot Denzel in his youth.
But I’m now jealous (only slightly) of my friends who have had a great Thursday night escape with what seemed like one of the few quality TV shows on air. Since my cancer diagnosis, I’ve tried watching ER many times, but couldn’t stomach the palpable reality of the hospital. It was as if I could smell the rubbing alcohol wafting off the screen. Great TV to one is post-traumatic stress to another.
Last month I rented Synecdoche. I liked Charlie Kauffman’s other twisted and addictive movies, Eternal Sunshine of the Spotless Mind, Adaptation, and Being John Malkovich. But when Kauffman’s wacky brilliance mingled with the plot a theater director suffering from strange symptoms that shut down his autonomic body functions, it flashed me back to my life as a 27 year-old choreographer, when docs spent a year and a half trying to figure out what was wrong with my body before I received my cancer diagnosis. Those were the days when I’d fall asleep in the morning on my cold bathroom floor after brushing my teeth because I couldn’t make it back to my bed. I turned Synecdoche off after 45 minutes.
Are you able to watch movies and TV shows about hospitals and disease? If so, what are your favorites and why? Are med shows and flicks comforting in their familiarity or do they hit too close to home? Has illness or being a cancer survivor made you squeamish or desensitized?
Some will fall in love with life
And drink it from a fountain
That is pouring like an avalanche
Coming down the mountain
I wanted to use this quote as the first page of my new book, but then I thought better of it. If you had never heard of this band, cracked open a book and saw the words “Butthole Surfers”, you might be slightly deterred.
The song has nothing to do with cancer and is a pretty harsh reality check about young people dying. So why do I love it so much? First, the music is an incredible receptacle for the of non-verbal, physical angst that piles up in my body, like right now as I’m only six days away from my check up. Blasting this song and dancing in my living room is an essential in my repertoire of fidgety distractions.
Secondly, I love the combined images of swallowing up life and having it cave out from underneath you. Avalanches are the most accurate depiction I have ever seen of what it feels like to be diagnosed with cancer as a young adult. You are sailing along, and it is not that you trip, or fall, it is that the entire face of the mountain you are on crumbles away beneath your feet and you go flying with it. Forget chanting or peaceful meditation; watching the intensity of avalanche videos just feels down right healing to me. Step away from the You Tube!
Do you have a cancer anthem song? What symbols, images, or metaphors do you relate to that describe your cancer experience or what it means to be a “survivor”?
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