“Hello… is it me you’re looking for? Cause I wonder where you are, and I wonder what you do…”
That’s one of my favorite cheesiest-of-the-cheesy love songs. Lionel was an 80s fixture for me, for sure. Now that song will be stuck in your head all day.
“And I want to tell you so much… I love you.”
It’s been a long time, friends. I’m not sure I’ve ever gone for two months straight without penning a blog. Thanks for sticking around in the big, silent void.
There is nothing more tedious, I’m sure, than to listen to someone chronicle a medical journey, so I’ll just say this instead: It’s been a long couple of months of health and cognitive issues, the worst case scenario has finally been taken off the table, I’m down fifteen pounds (not in a healthy diet and exercise kind of way, but in a can’t-keep-anything-down kind of way), and we’re moving forward. My doctor says this journey is a “process of elimination.” Bit by bit, we’re eliminating what it isn’t so we can get closer to what it is. That sounds expensive and time-consuming to me, of course, but what I’ve learned over these past two months is that we can never take these things for granted: good health, rock solid friends, and a family loved beyond measure. Money comes and goes. So be it.
Meds have rendered me a bit fuzzy and because they’ve seemed to do more harm than good on this go-round, I’m currently weaning off of them. But I’m clear enough to know and share these things:
Medicine is both an art and a science, and as an artist, I’m beginning to more fully understand this side of the equation. We must — in this crazy, insurance-driven healthcare world — be self-advocates. It took a full decade for my beautiful Mom to be definitively diagnosed with MS. A decade is a long time of not knowing. Keep asking questions. I believe that many of us women who are used to being the caregivers often struggle with being cared for. But no one knows and understands your body like you do. If something feels wrong, something probably is wrong. Don’t wait, don’t brush it under the rug. We don’t have to stop caring for others to also care for ourselves. In fact, sometimes caring for ourselves looks exactly like caring for others. There are so many, after all, who love and depend on us.
I’m approaching 45, and the body that has served me so well is starting to complain a bit. I’ve carried excess weight for years, and I’m certain that strain is beginning to catch up. This isn’t about fat-shaming, it’s about self-care. I’ve been 50 pounds lighter than I am right now. I can attest that it’s easier to breathe, easier to run, easier to sleep, easier on my joints, easier to exist without lugging those extra 50 around. I’m not about food deprivation or denying ourselves the pleasures of life, but the old cliche proves so true… all in moderation. Eat a little less, move a little more. I’m still learning.
Never underestimate the power of love to see you through any situation. We learned it with Gus, and we’ve relearned it again 15 years later. From friends who sat through CT scans and MRIs to friends who drove seven hours straight to deliver me safely back home to those who housed and loved and tried to feed me to those who texted, called, and checked not only on me but on Chris and the kids — we have been so well-loved. I have also learned, by the gentle touch of a friend’s hands on a swimmy head, that human contact can heal in its own profound way. As the great Annie Lamott recently said, “We touch hands, and it’s Communion. The most spiritual thing you can do is touch another human.” Amen, Sister Anne. Amen.
Sometimes I feel like I’m a Doubting Thomas kind of girl — I have to see to believe and to understand. Not just see, but experience. I’ve known others who have gone through similar, painful journeys. I didn’t fully understand. I didn’t take the time to understand. Now I do. I wish I had done more for them. I wish I had reached out my hand to touch a swimmy head. If this situation has taught me anything, it’s that I can always be kinder, I can always be more empathetic, I can always give a little more.
And also, I can receive with grace and gratitude. It’s a hard lesson for me, the receiving. But it’s a gift to those who can give, who are able to give, who want to give. Thank you, givers, for that gift. I’m beginning to understand.
Tranquility in an uncertain environment 