Life in all of it’s beauty and struggle… doesn’t stop.
but it sure can feel like it sometimes.
Over the past two years I’ve had to take a significant step back from all things creative. My life was at a pivotal point. I knew things would be different on the other side, I just wasn’t sure where I would end up or how long it would take me to get there. Care-taking my mother full time became everything, and even tho she passed in April, I still wake up some nights going through one of many lists of her medical needs…
- Power up pump
- Add vitamin c (ascorbic acid)
- Add multi vitamins (MWF ONLY)
- Attatch tubing to pump
- Prime tubing
- Tap all bubbles out of tubing (Maddening)
- Flush port
- Attatch TPN
- Run 14 hours
- Stop pump
- Clamp tubing
- Detatch tubing
- Flush port (x2)
- Cap off port
- Remove battery from pump
Trips to the Cancer Center of America
For 8 months, my mom and I would make the 6 hour trip north to the closest Cancer Center of America we could find. Aside from the constant buzz of barely reachable radio stations the trips were quiet. I didn’t want to say anything… I didn’t know what to say…
Every time we passed the town of Shirley, IL, my mom would point and say “Shirley” and laugh, no matter how bad we were feeling, and we both came to find peace driving through the windmill farms that sprouted out of the Illinois plains.
But the outcome of the trips never changed. More Chemo. More Surgeries. More home medical instructions. It didn’t take long for me to start loosing hope.
I couldn’t speak. I couldn’t tell anyone what was going on out of respect for my mothers pride and dignity. I couldn’t tell anyone what was going on because who want’s to hear “well, my mom’s dying of cancer, and here are the details of how we’re struggling to keep each other alive…” when they ask you how you’re doing. I felt Silent. I felt numb…
So I started drawing. because I had alot of time waiting between doctors and chemo. because I didn’t know any other way to speak… and I needed to escape, to get out, to get… something… out.
Drawing became a way to connect with my mom during these quiet times. She often seemed to enjoy watching the way the ink would develop stories and images on the page. I also felt less guilt not talking when I was focusing on a piece.
Sometimes I wouldn’t necessarily want anyone to see what I was drawing/thinking at the time. I found a trick using white ink (a white gel pen) would allow me to lay out some basic text without revealing the message. From there I could work on the page around the text, and allow the message to appear slowly.
I can’t tell you how many times it became clear that the Dr.’s weren’t communicating with the nurses, and the medical supply company, and the local er and hospital and dr and so on untillit’sjustonebigconfusingmessofwhoknow’swhat’sgoingon… and before I know it it’s up to me. My mother was loosing the ability to keep track, and altho I could remember the many lists…. flush ports…cap ports…sanitize everything… there were days when even I couldn’t remember my own age, or where I was last week.
Other times even I could find a little bit of hope, through the support and encouragement of friends and family. But asking for help isn’t easy, especially when the tasks feel like they’re adding up to far more than a whole community can provide for.
Why I thought I could take it on myself, I don’t know… Why my mother was fairly convinced she could until the end, I may never know. But she, She never gave up hope. EVER.
I sat in a quiet and dark hospital room, scribbling and swirling away. After almost 2 years of care-taking my mother through stage 4 ovarian cancer, the community I feared would ultimately blame me for her failure to survive, had trusted me enough to make the biggest decision of my mother’s life. Continue receiving medical care in the hospital with little to no chance of functional recovery, or go home and stop medical care and start comfort care (hospice).
I had failed… No more all natural diets, no more trips to the cancer center, or chemo treatments, or windmills, or supplements or medications or dr’s or nurses… the choice was death or death, and no matter what, I had to make a choice.
I chose the one last gift I could. I chose hospice. The right for her to go home, to be among family and friends. On her own terms. If she had made one thing clear, in all this time, it was was that she wanted to be home. In less than 24 hr’s a hospice team had brought in and taken out a hospital bed, breathing machine, and all the medical equipment you would expect someone to need for weeks… but she only chose to use it for 12 hrs, and passed quietly on the 27th. And when they came to take her, I played piano, as she passed by me one last time, into the dim and misty morning hours.
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