Oy, the pain!

“On a scale of 1-10,” the nurse’s aide asks, “how bad is your current headache?”

That is such a hard thing to evaluate.  I don’t want to understate my pain, but  I also want to leave room in case it gets worse. It can always get worse.

I came to headaches later in my life than many.  When I was younger, I certainly had headaches from time to time, but a bit of Advil — or Ben’s favorite combo of Advil and Tylenol — would take care it.

Then came my stroke.  It was, indeed, the worst headache of my life. It came on suddenly and brought me to my knees; I was crying hysterically when I called 911.  The paramedics came, wondering what was wrong, wondering if I was drunk or stoned.  Fortunately, Ben, my husband, arrived soon after they did.  He assured them that something was terribly, unusually wrong.  So, they put me in the ambulance, and to the trauma center we went.

I was so lucky.  The ER was first-rate, and the doctors were both smart and kind.  After a quick CT (or MRI?  I don’t remember), they diagnosed my stroke and offer me treatment:  TPA, the new clot-busting drug.  There was a risk, the docs said, but this was my best shot to get my left side and my speech functioning again.  It was a miracle.  My left arm, which had been hanging uselessly, suddenly rejoined my body.  My tongue no longer felt heavy and clumsy.

There was rehab, of course.  I was still unsteady on my feet, and my balance disorder lingers until today:  sometimes better, sometimes worse.  I have canes, a four-point pain, a walker, and a wheelchair.  I never know what I might suddenly need.  Chronic exhaustion is still a problem today.  Polka-dots and stripes make me dizzy and spark headaches.

And the headaches. . . oy.  I had never had headaches like this, migraines.  Suddenly I will see an aura or get nauseous.  The blood vessel behind my left eye will start pounding, determined that I pay attention.  Pain, pain, pain.  Is it normal to live that way, with my head always unhappy?

At first, Ben and I headed back to the hospital with these headaches.  They were not as bad as my stroke, but they were insistent and I did not want to miss a TIA or small stroke.  But the results kept coming back the same:  no blood clot, no external reason for the headaches.   And so, I entered the world of chronic migraines.

I have more days with headaches than without, significantly so.  Sometimes the pressure behind my eyes, or the dizzy, light-headed sense I feel — somedays, it’s better, quieter, less intrusive, while other days send me to bed in a quiet, dark room, perhaps with the aid of a narcotic pain-killer.

For almost 20 years now, I have been searching for help for these headaches.  Most medications have not really helped, or haven’t helped enough  I am no as good at keeping my headache chart as I should be, but I know that I average 22-24 days with a headache each month.  Thankfully, many are in the 4-5 range on the pain spectrum.  Others, however, reach up to 7, 8, 9 and I become desperate for a cure, a remedy, a temporary time-out without a migraine.  My thesaurus tells me that the antonym for “headache” is “relief.”

Relief is relative, though.  For me, it’s a minor pain, say a 2 or 3.  I no longer expect the headaches to go away forever.  Rather, I am seeking ways to understand my headache and its role in my life.

Making meaning of these headaches is a challenge.  There are so many in the world who are suffering: hungry, homeless, acutely ill.  I am none of those; I am a woman with all sorts of privilege, and I want to honor the pain of others.  These headaches, it turns out, won’t kill me; they simply disable me, sometimes more, sometimes less.  Am I entitled to claim my hurt, or, as I am afraid, does doing so make, , “too big a deal” out of them?

It’s not a contest, I know (in theory, at least).  Acknowledging my hurt does not diminish the pain of others who are suffering.  And yet, it feels to  me that I am doing exactly that — saying I am in pain turns the attention to me.  Is there only a small, fixed amount of care in the world?  If I have a need, does that mean that others do not?   Is there enough love, enough compassion in the world for all of us?

I would like to think that my illness(es) over the years have taught me about empathy, and not just about selfishness.  I want to take care of other people, a role I have sought since childhood.  What my headaches, my exhaustion, my balance issues, and, yes, my mental health challenges have all taught me over the years is that I can’t really be of service to others unless I take care of myself.  I have tried to do the opposite, to spend all my energy on the people I love and those in my life who need care, while ignoring my own, nagging needs.  But that model doesn’t work for long:  I give, I listen, I care, I teach. . . and then I fall into bed for a few days, trying to make up for having done too much without attending to myself.

A friend of mine tells me she has 15-20 hours (at most!) each week for being in the world, and no more.  These hours are used up by all sorts of things: her teaching, her writing, her medical appointments, everything!  Cooking counts, she tells me, as does having lunch with me!  That is not to say I am a burden on her, but rather to note that energy out is energy out.  She may feel uplifted and happy after seeing me, but she is still tired, still using up her “spoons,” as the lexicon goes.  She has, say, 15 spoons per week.  Everything she does uses at least one spoon, maybe more.  And when she is out of spoons, she needs to rest and recuperate.  She is an amazing person, one I respect and long to emulate in her caring, her tending to the needs of those at the bottom of society, such as immigrants and those with mental health issues.  But she can only give so much before she gets ill.

I don’t judge her for that.  In fact, I admire her self-knowledge and her candor about her limitations.   So why do I judge myself when I need downtime, when I can’t do as much as I think I should do?

Acceptance is the key, I guess.  Accepting that I have headaches, that they are real and demand my attention, is the first step.  Figuring out when to push ahead, and when to rest is the tricky one for me.  I tend to ignore my own needs.   Keeping that in mind, I need to stop and listen more often to my body.  Taking care of myself does not mean I am lazy, bad, unproductive, or a drain on my family, my friends, the world.  Rather it is, finally, admitting my limitations, and understanding that all the effort in the world is not going to change what I can and cannot do.  It is saying, “Oh, a headache.  What do you, my migraine, need from me today?”  Sometimes I need a dark, quiet room; sometimes I can still be in the world, working, teaching, learning, albeit with a pain in my head.  Sometime, pushing through is a good idea; sometimes lying down is a better one.  If only I knew how to figure out which is which!

Compassion might be the next step:  compassion for others whom I love, empathy for me and my poor tired body. Perhaps we can share headaches, and heartaches, together, leaning on one another when the hurt gets too bad.  Perhaps that is the meaning:  my pain helps me care for others who are suffering — and vice versa.  Instead of a competition, we can have a club: all who are needy, all who suffer, join us in being human, with all our fragility.  Let us see each other’s pain, and let our love sustain us all.