I Art, Or Am I?

Years of writing about aging–and what  Judith Peres calls the “vicissitudes of aging” — taught me that age as a number, a construct, a device. With a degree in math and a poet’s sensibilities, I have cruised through time, thinking that it did not quite apply to me. Or to anyone, really. We would all somehow carry on along this blue planet, our mortal coil. Despite sorrows and losses, we could hold each other up, and forever was one more convenient imaginary number. I could split that, too….

My body differs and jolts me with its own realities. It contains time, no matter how I count it. These bones are no longer 18, nor these eyes, no matter what BuzzFeed or some Facebook quiz calculates of my vision. 

Watercolor Pencil: Testing my Hand

Ditto for my hearing: my grandmother was right when she urged me to “turn down that caterwauling.” I have said something similar when one-too-many Kendrick Lamar tunes has blasted through some speaker in my house.

Even Bruce Springsteen is my father’s age. And when I refrain from Dancing in the Dark in my orchestra seats at the Walter Kerr theater come November, my Verified Seats will be in the handicapped area, thanks (I guess?) to several autoimmune conditions that flare at strange times and make walking and breathing a challenge.

Bruce, RFK, August 1985

HOWEVER, I am the daughter and granddaughter and descendant of so many strong women (and men, but it is the women I knew best) who gave up homes, families, opportunities…for reasons I cannot presume to know, but assume must have been to better their lives.  Have I done the same? Not often enough, but I pray and hope and think that I have raised strong people.

And I, too, persist, though I no longer think I will last so long as my paternal grandmother, whom my kids knew as Meme, who lived into her nineties. Or some of my mother’s relatives, who managed the same. They had some grit that I have scattered elsewhere in the course of this living. Perhaps I will gather it again.

Whatever or wherever that grit is, I am now beyond half done this life, for that is how the years add up. And the blues may be simply knowing that I have so much yet to learn, and yet not done. I am not ever going to be ready red hats and purple sparkles. More like my hero, Bonnie Raitt, whose website has this to say of her newest album, Dig in Deep:

 … Bonnie Raitt continues to personify what it means to stay creative, adventurous, and daring over the course of a legendary career. “I’m feeling pretty charged, and the band and I are at the top of our game,” she says. “This period of my life is more exciting and vital than I was expecting, and for that I’m really grateful. At this point, I have a lot less to prove and hey, if you’re not going to ‘Dig In Deep’ now, what’s the point?”

Bonnie Raitt Owns the Stage in DC, July 2017

How can I feel half done here, with so much yet to do? For instance, how will I roam around Annapolis on 9/19 for the SketchCrawl when I’ve just learned to draw?  My mother, artist  Mary Lynch, works five days each week in her studio at the Torpedo Factory Art Center. What some people call a Muse she has described as a monkey on her back. She says she has no time to waste. She and Bonnie Raitt are about he same age, too. Like Bonnie, my mother is not playing a game, she’s not dabbling. She digs deep and creates objects that have not ever been made before.

Still Life with Fruit

For my 55th birthday, she gave me a portable easel, which Ian, my 15-year old, set up for me just last night. I have watched it most of the day, and worked at a small watercolor for a friend.

Portable Easel Awaits Artist

How to paint something large, when I have only learned to do small things? There is only today. Only these hands. This moment. Here I go. What will you learn, old friends and new? What’s stopping you? What motivates you? I’d love to know. Share your ideas in the comments. Let’s go. 

Chronic Pain: Living What I Did Not Know

On March 13, 2013, a needle stab or two during oral surgery triggered chronic neuropathic pain, which involves my entire mouth and, on its worst days, my lips, nose, and palate. It is called burning mouth syndrome, a misery I would wish on no one.

I’ve spent the years since then trying to cope with life as a person with chronic pain, trying every medication and complementary treatment my doctor and specialists recommended. As Dr. Victor Montori told me–before I myself became a patient–patients have to complete many tasks, and work to regain health. Doctors must consider what else patients have to achieve while conducting the work of being ill.

Nothing ever really helps–or what sometimes helps causes short-term memory loss–and I’ve been forced to adapt to living with a condition that has upended my life. I’ve also developed several autoimmune diseases, which come and go and flare and vanish, a perplexing mix of symptoms and treatments.

Much irony in this, learning to live with multiple chronic conditions as I age. It’s a topic I’ve written about for many years, especially when writing about how to help frail elders and their caregivers. The issues sometimes seemed intractable, and the solutions often appeared to be simple.

I have since learned how tough all of it can be. In December, I agreed to participate in a new patient-centered medical home (PCMH) project. I signed on with relief, for I could no longer manage the dozen or so medications prescribed by seven different providers–none of whom interacted with the others! Even now, when a clinical pharmacist finally completed her review of my medications, with an eye for spotting any that might be discontinued, I have yet to see her recommendations.

It is not that I have not asked–but that her recommendations were apparently faxed to my primary care provider, who then faxed them to my care coordinator, who concluded that I should not see them until my next appointment with the PCP. Meanwhile, agitated specialists have called me to warn that someone has been calling them to suggest changes to my medications!

Whew! Health information technology (HIT)? Not there–the area’s clinicians have chosen HIT vendors whose programs suit the practice’s needs. This means that they might not connect with the records stored by other clinicians, or the hospital, or the diagnostic tests. I am still responsible for trying to convey the complexity of it all to each clinician, and hope that the independent pharmacist who fills some prescriptions (other than those required by my medical insurance to be called in for maintenance supplies) spots potential adverse effects or interactions.

When I voiced these concerns to my care manager, she noted, “Well, you are a highly educated person who is knowledgeable about what should happen. This [program] is still a work in progress, and it will require many tweaks.”

Tweaks? I’m tweaked! What about those whose health literacy is less sophisticated? I’ve found my own sophistication to be no match for the alternatives clinicians suggest to me. Often, I guess–do I like the sound of the medication? Have I seen it on direct-to-consumer ads? Have I tried it before? What do others think of it?

It seems a foolish and expensive way to make such critical healthcare decisions, yet off I go on this road less travelled. Please take some time to follow me for a while, as I chronicle the next few months–and the work I accomplish.

 

Key Words: chronic pain, pain, autoimmune disorders, care coordination, patient-centered, health literacy