This past month and more has been largely taken up with the troubles of my sister Alice (http://medford NULL.patch NULL.com/announcements/obituary-alice-e-washburn), who died Monday after more than a month in a coma.
Like me, Alice had lipedema, and in many ways had it worse than I do, despite being two years younger. This year, she seldom left her apartment without a leg brace and a cane or walker. We were not the closest of sisters, but after I was diagnosed with lipedema we were able to bond about the condition and treatments, recognizing that this was something we both had.
Her death was only tangentially related to her leg condition — it was a rare combination of bad luck and complications. It started in mid-November when she slipped and fell in the bathtub, breaking her leg. Apparently while the leg was broken some bone marrow escaped into her system, causing a fat embolism (http://en NULL.wikipedia NULL.org/wiki/Fat_embolism) that got into her lungs and put her into respiratory failure. She spent more than a month in a coma trying to recover from acute respiratory distress syndrome (http://ardsusa NULL.org/facts NULL.htm), and at one point looked like she might be recovering, but took a turn for the worse just before Christmas. On Dec. 26, her longtime partner, our dad, and I gathered with a couple of close friends to make the sad decision to turn off life support.
There’s no clear lesson to be drawn from such a death, but I can share a few things that have occurred to me in the days since her passing.
* Make arrangements for your own death. Get or update your will, power of attorney and health care proxy. If you have kids, name someone to be their guardian. If you want to donate your body to science, fill out and sign the relevant paperwork now — most places will NOT accept a body on the word of your next of kin, we discovered in my sister’s case.
* Take care of your mobility. Exercise and stretch to whatever extent you’re able, as many days of the week as you can. Find an exercise that makes you happy, the way swimming does for me, and don’t let anyone or anything stand in the way of you doing it. Work with your doctor to get whatever therapy you need to stay as flexible and mobile as you can. Declutter your home to avoid tripping hazards.
* In the words of the late Warren Zevon, “Enjoy every sandwich.” Find something for which to be grateful every day. Tell the people you love that you love them. Smile at a baby, stop for a moment to feel the sunshine, notice someone in your life doing something right.
One wonderful idea I learned from all this: When she went into the ICU, Alice was in a coma and no one on the staff there had interacted with her while she was awake. A young friend of hers had recently done a unit in school about caring for people with Alzheimer’s, and used a notion she’d learned from that to make a poster for Alice’s room, describing the things she liked and the important people in her life, and including some pictures of her. Among the things listed was that she liked having her hair braided. So even though she could not speak to them or thank them, the nurses braided Alice’s hair every day.
Because many of us with lipedema have difficult experiences with medical authorities, it’s important for me to acknowledge the wonderful care my sister received at Massachusetts General Hospital (http://www NULL.massgeneral NULL.org). (On RomneyCare, no less.) The doctors and nurses in her unit clearly saw her as a person, not just a body in a bed, and were heroic in trying to find a way for her to make it. When it was clear that the end was near, they made sure her pain medication was left on so that she would pass peacefully. They cried with us and hugged us at the end, and I honor them for their long hours of service while most people were unwrapping gifts and relaxing with family.