“This is not what they signed up for, not at all. . . . Redefinition is a nightmare — we think we’ve arrived, in our nice Pottery Barn boxes, and that this or that is true. Then something happens that totally sucks, and we are in a new box, and it is like changing into clothes that don’t fit, that we hate. Yet the essence remains. Essence is malleable, fluid.” Anne Lamott, A Slow Walk into the Amazing Now
Anne Lamott’s writing has hit me straight in the heart once again, this time in an essay about a friend who has ALS. Usually I’d add my reflections, but this doesn’t need much. Almost everyone reading these words knows that redefinition is a nightmare — a gut-wrenching, life-twisting, heartbreaking nightmare that feels like it will destroy the very essence we hold dear. Amidst that, it’s difficult to see that one’s essence not only remains, but is stretching toward the light and growing ever stronger.
I spent many years lost, not knowing who I was under the onslaught of chronic illness. I mourned for my lost self, sure I’d never see her again. Even though I couldn’t see it, my essence was still there. It was, in fact, what carried me through, changing in the ways necessary to keep me going. In this year that I’ve had remarkable physical improvement, I still haven’t seen the Kerrie I used to be. That’s OK. I like this redefined version so much more.
Being in Seattle this summer has brought emotional turmoil. I love it here and am grateful to get to spend time away from the Phoenix storms. But, I love it here and am angry that migraine is the reason I don’t live here. The grief from not being able to live in the city that feels like my home is immense.
In My Favorite City, Another Migraine Loss, published today on Migraine.com, I wrote about my immense grief and the anger it triggered after I visited my old neighborhood:
“The tears flowed, not out of nostalgia for the times I had here, but grief for how much I love this place I do not live and that migraine is the reason I do not live here. … I’m also angry that migraine has made this choice, and so many others, for me. I didn’t invite migraine into my life, and yet it weighs in on every single decision I make.”
I wrote that post a few weeks ago and my emotions have settled down a bit. The grief is no longer acute and I don’t feel quite as connected to the city as I once did. Perhaps that’s because Seattle has changed a lot in the last four years; perhaps because Hart just visited for a week and I realized that, more than any particular location, he is my home. Or maybe it’s just the ebb and flow of grief.
When I write, the words often flow from my fingertips before I consciously assemble them in my mind. I type and suddenly thoughts I didn’t know I had are splayed across the computer screen. This can be an exciting, almost magical experience. It can also force me to face truths I don’t want to acknowledge.
Even though I felt pretty good migraine-wise last week, something else always seemed more important than writing. It wasn’t until Saturday when I read a novel in which a teenager who was taking a creative writing class was continually surprised by what her writing revealed that I realized I was avoiding something. That truth I didn’t want to see? Ritalin is not the amazing get-your-life-back pill that it was the first week I was on it.
My migraine brain is not impervious to cloudy days. The mental fog has returned. I still have a migraine attack nearly every day. Sometimes I’m so fatigued it feels like sandbags are weighing down my body. I do not pop out of bed raring to go after seven or eight hours of sleep, nor do I go nonstop all day like the Energizer bunny.
While I mourn that lost energy and mental clarity, I also feel like an ungrateful brat. After a month on Ritalin, the pain tops out at a level 4 and I’m fairly productive even though I have to push myself hard to get going. Reducing my highest pain level by a full point and being able to get out of the house more? That’s a migraine preventive triumph.
Except that the losses continue to obscure the wins.
My oldest niece has been accepted to the college of her choice. I’m so, so proud of her and excited for the adventures awaiting her. And I’m crying because I missed her middle and high school years. Debilitating chronic migraine robbed me of the chance to watch, and help, my niece grow up.
Much of what migraine has taken from me I can still have — the career, time with friends, travel — but kids don’t stop changing. There’s so much I wanted to do and be for my niece and her sister and brother. Yes, they know I love them and that I’d visit and call more if I could (at least as well as kids can understand the havoc chronic illness wreaks on an adult’s life), but I wanted to be present as they grew up. I wanted to watch them mature from kids to preteens to teenagers to young adults. I wanted to be an adult they could call for help navigating the perils of adolescence.
The opportunity hasn’t completely passed me by. I truly believe I’m on a path to more migraine improvement. My oldest niece is 17, the younger one is 15, my nephew is 13. Many chances remain for me to be in their lives, especially if I do continue to feel better. Still, I’ve missed so many years, so many pivotal experiences, so much growth and change.
I’ve said that I don’t think I could survive these years of horrendous migraines without my innate optimism. I can always find the silver lining. Not today. Knowing I may have good times ahead cannot make up for all that I’ve missed with these kids I love so much.
My heart is breaking.
After a brief migraine respite (by “respite” I mean a few hours each day in which I can cook, run errands, etc. even though my pain levels hit at least a 7 most days), I’ve been back in Migraineville since late March. The last few days have been decent, yet I’ve been reluctant to return to the blog. An increased heart rate and shaking hands betray the nervousness I feel, though I can’t locate the source of it.
As cathartic as the blog has been, I suspect I am reluctant to return to the place where so much of misery is stored. [cue tears] It is difficult enough to look at the migraine diary I’ve kept since February and those are just numbers. I don’t have to re-read The Daily Headache; I know it contains five years just like the last few months. This pain I fight to escape isn’t any better now than when I began.
Blogging also reminds me of the many plans and hopes I have for The Daily Headache. I still believe I will eventually get that newsletter/support group/coaching going. Maybe I’ll even revive the forum I had to abandon in its infancy. Right now it feels far more likely that I’ll be thrilled to get a post written every four months. Kinda like the last two years have been. I can’t help but feel demoralized.
You know how hard I strive to keep a positive attitude. Blessed with a natural optimism, I’m generally fairly successful. But I still long to have my life back.
P.S. My mood was much improved within 30 minutes of posting this. Must be that catharsis thing I mentioned.