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.
“If I ever have kids and they’re upset, I won’t tell them that people are starving in China or anything like that because it wouldn’t change the fact that they were upset. And even if somebody has it much worse, that doesn’t change the fact that you have what you have — good and bad.”
This quote captures what I try to say when someone tells me that their suffering isn’t a big deal compared to all the other horrors in the world. It’s been so hard for me to put this concept into words, but Charlie in The Perks of Being a Wallflower says it so eloquently.
Yes, the world is full of disasters and atrocities, and while you shouldn’t ignore these issues, “putting things into perspective” can do you more harm than good. It minimizes what you’re going through and keeps you from understanding and accepting your suffering as real. It also keeps you from mourning the real losses in your life.
Just thinking about what others are going through doesn’t help you or other people. You can’t help the people starving in China unless you help yourself first.
Keeping the tragedies of the world in mind is important too, but it shouldn’t interfere with how you treat yourself. Perspective does keep you from steeping yourself in sorrow forever, but some wallowing is necessary to cope with illness.
Treat yourself kindly. It is not you’re fault that you’re sick, nor are you a bad person for thinking about how your illness affects your life. Most important is that you take care of yourself so you can care for other people more effectively.
I’m writing this for myself as much as for you. Putting myself last is a lifelong behavior, just like for Charlie. I think I’m getting better at being nice to myself, but it’s not my instinct.
If you haven’t read The Perks of Being a Wallflower, I can’t recommend it highly enough. The main character, a 15-year-old in his first year of high school, is astute and charming. The themes are applicable to adult life and the novel inspires thoughts about how the reader’s teen years shaped the adults they’ve become.
Nearly everyone who e-mails me about The Daily Headache says that they are relieved to find someone who identifies with the wild emotions, bizarre symptoms and, of course, horrendous pain of headache. I felt this when I began reading headache forums and found it tremendously helpful. While community is an important element in coping, everyone’s experience of illness is ultimately unique.
The Lonely Patient: How We Experience Illness is a new book that delves into the solitary nature of illness. This excerpt certainly resonates with me:
Like all of us, [Joanna’s] unique, irreplaceable, and healthy body was the reference from which she made sense of every experience. Joanna took this so much for granted that illness felt like a betrayal. The world lost meaning, or at least she discovered that the meaning of her world was based on health to a greater extent than she had supposed. The meaning of life became simplified: I am my body, my body is sick, I am sickness. Life’s stability had been threatened. The journey to the state of illness had been short and ruinous. (NPR has the rest of the excerpt)
Many people have used Elisabeth Kubler-Ross‘s stages of grief to explain how to come to terms with illness. Similarly, author Michael Stein identifies four “emotional stages” — betrayal, terror, loneliness and loss.
The book has only been out for a week, but your local library may have it. Mine doesn’t have it shelved yet, but I was able to put it on hold. I’ll give you a review when I’ve read it.