People say that humans can’t remember the physical sensation of a painful event after it has happened. We can remember the emotional and cognitive experiences, but not the actual physical pain. I can’t find solid evidence for whether this commonly held belief is true, but I’ve just tested it and have to say that it is for me.
Last week I had the first level 6 migraine I’ve had in months. The worst of the pain only lasted an hour, but I spent that hour marveling at how much pain a level 6 migraine could bring. Level 6! That’s at the LOW end of my severe pain scale. For many years, level 6 pain was a reprieve from higher daily pain levels.
When I got beyond thinking “Wow, migraines really hurt,” I moved onto the question that continues to baffle me: How in the world did I survive? This quotation from Anna Quindlen that I shared in The Daily Slog of Chronic Migraine provides a partial answer:
And then sometimes we become one of those people and are amazed, not by our own strength but by that indomitable ability to slog through adversity, which looks like strength from the outside and just feels like every day when it’s happening to you.
I survived because this was the normal life that I slogged through each day.
I survived because the alternative is a choice I wasn’t willing to make.
I survived because I am stronger and more courageous than I ever thought possible.
From the many readers I have heard from over the years, I know these traits aren’t unique to me, but are common among those who live with a headache disorder, chronic pain or chronic illness. You and I and everyone else who wakes up with debilitating pain and illness each day — we’re pretty incredible. Whether or not we go to work or make dinner or even get out of bed, we overcome the insurmountable every single day. We are awe-inspiring.
“If I believed in miracles, this would qualify as one.” I wrote that last week in reference to how much better I felt on Tolerex. It’s been bugging me ever since.
A miracle arrives out of the blue and is conferred by an outside force, some otherworldly or supernatural being. My improvement is not a miracle. It is a direct result of what *I* did, not the whimsy of some outside agent.
I’m the one who pored over articles from medical journals. I’m the one who has sifted through the highly unreliable information on histamine that’s available online, trying to differentiate fact from anecdote. I’m the one who created a spreadsheet and has logged every food I’ve tested. I’m the one who chose to give up real food to see if that would make me feel better. I. Did. This.
You know that I’m far more prone to self-criticism than self-congratulations, that I’ve adopted the criticism of the people who doubt the severity of my illness and my efforts to overcome it. Not this time.
It took going to extreme measures, but I can finally see how hard I’ve fought (and continue fighting) to try to reduce my migraine frequency and severity. Only a desperate, dedicated person would give up food (FOOD!) in an attempt to feel better.
My improvement is no miracle. It’s the result of not just a couple months or years of effort, but of 12 years of slogging through the days, attempting one unsuccessful treatment after another, and picking myself up and trying yet another avenue again to find relief.
So, yeah, I’m proud of myself. I think I deserve to be. I *finally* think I deserve to applaud my tremendous effort. This long, painful journey is nowhere close to over. But it’s far easier to move forward now that I can see myself as the courageous warrior my loved ones have been telling me I am.
Just the thought of being vulnerable makes most people recoil. Open yourself emotionally to the whims of others? No, thank you! But when you’re sick, you have no choice. You must rely on others to take care of you or the responsibilities you cannot deal with; you have to repeatedly reveal your deepest agonies to health care providers (who may not be understanding) and hope they’ll give you the treatment you need; you have to let others see you at your worst, when you have absolutely no strength to keep up airs.
The vulnerability inherent in illness feels like a weakness, when the truth is actually the exact opposite. Vulnerability is a sign of strength and courage, as well as a powerful tool that allows us to connect deeply to others and live wholeheartedly, according to the research of social work professor Dr. Brené Brown. Her TED talks provide an inspiring look at vulnerability and shame (another major emotional factor in chronic illness).
I highly recommend watching both. In The Power of Vulnerability, Brown discusses her research and personal aversion to vulnerability, as well as how important vulnerability is living fully. Listening to Shame addresses the power of vulnerability as well, but looks at the epidemic of shame in our culture and the difference between guilt and shame — an important distinction for those of us with chronic illness.
Brown’s talks aren’t proscriptive, but provide insight into the power and strength of vulnerability. Although I didn’t realize it, I’ve been applying the principles she discusses as I’ve become increasingly open about the true impact of chronic migraine on my life. In letting people see me when I was at my sickest, in reaching out for help when Hart and I were alone in a new city, in not hiding the magnitude of my pain or degree of disability from friends, my connections to others are so much deeper and richer than in all the years I tried desperately to pretend I wasn’t as sick as I am.
By trying to hide chronic migraine, I was putting a wall between myself and anyone who tried to connect with me. Because of my shame over being sick, I wasn’t living honestly or authentically. No one could know me, not even myself. It’s not coincidental that I lost my sense of identity at the same time I was attempting to be invulnerable.
Vulnerability is frightening for everyone. To be open about an illness that is heavily stigmatized and often dismissed as inconsequential or made up is even more terrifying. And, yet, Brené Brown’s research shows that being vulnerable is the key to living wholeheartedly and authentically. It is also a sign of tremendous strength. As she says in her talk on shame, “vulnerability is our most accurate measurement of courage.”