March 19, 2011 at 5:24 pm (Uncategorized)

I nearly pulled out half my hair yesterday.  It started innocently enough when I noticed a grey strand glinting amidst my tangle of long, red-blonde hair.  I yanked it out, and stared at it for a while.  Maybe it wasn’t a grey hair, I thought optimistically.  Maybe it was just a blonder strand—a lot blonder than the blondest hair on my head, but blonde nonetheless.  However, closer examination of it revealed that I’d need more than optimism to consider that hair anything but grey.  I’d need to go into full-blown delusion.

Once I acknowledged that I had plucked a visible grey hair from my head, I felt old—and a little frantic about it.  How many more of those suckers did I have corrupting my hair?  Were they noticeable?  I scrabbled around my scalp and unearthed a bona fide nest.  Yank.  Yank.  Yank.  Yank.  Yank.  Yank. OUCH!  Yank.  Yank.  I dug into another zone of hair, and, Good God! There were more.  Yank! Tug! Rip! Pull! Yank! OUCH! OUCHOUCHOUCH!  By the time I’d finished my extraction campaign, I had a serious headache and a pile of silver—okay, grey—hair around me.

I’m not ready to go grey.  And the fact that I’m still so upset about a few—okay, a lot—of pigment-less hairs surprises me.  I thought that the whole process of having my mortality shoved in my face by a serious and chronic illness was my version of a mid-life crisis and that I’d be immune to the clichéd scene of “woman confronting grey hair in mirror.”  I figured that the real prospect of losing my life—and the corresponding awareness of how fleeting and precious it is—would inoculate me against the petty vanities about wanting to stay young.

Apparently not.  I’m turning 40 in August, and it seems that I’m not keen to roll over into the next decade.  Sure, I’d rather reach 40 than suffer the alternative.  But how did I get so old?

When I had cleaned up the tangle of grey hair from the bathroom and swallowed a couple of Tylenol to ease the aching of my scalp—and taken many deep, cleansing breaths—I regained perspective.  Sort of.  It makes sense that I would be particularly sensitive to anything messing up my hair.  After all the physical changes that sarcoidosis and its treatments have brought to my body—the major weight gain, the defibrillator and port bulging out of my chest, the surgery scars, the come-and-go sarcoid rash—my hair is the one thing I am still consistently proud of and happy with.   I’m not resigned to being 100 pounds overweight and thus not fitting into the “fat” clothes I bought when I gained the first 50 pounds on prednisone.  But I can accept that losing all that weight sensibly will take some time—and that I probably won’t get a self-esteem boost from gazing at my butt in the mirror any time soon.  My hair, on the other hand, gives me immediate satisfaction.

It’s funny, but in some ways, I feel like some benevolent force in the universe chose to spare my hair to help me through the darkest days with the disease.  The doctors told me that there was only a 10 percent chance that I wouldn’t go bald during my long stretch of chemo (and I usually don’t fare well with medical percentages).  Surprisingly, although my hair changed from the chemo, it actually stayed rooted to my scalp.  The hair is redder, coarser, and very curly, while it used to be bonder, straighter, and softer.  And it did take me a while to learn to manage it.  But it’s still hair that stylists ooh and aah over when I go in for my semi-annual haircut.  I also get complimented on my hair at least a couple of times a month by random strangers.  It’s nice to get noticed like this—not for my “bravery” in facing the disease, not for being a good Mom to Andrew, not for sticking with Jay through tough times—but for something as banal and self-centered as lookin’ fine.

“Will you dye it?” a friend asked me, when I’d called and wailed about going grey.  That would be one way to deal with the blow to my ego—just wash that grey right out of my hair and pretend nothing’s changed.  I do that a lot already—not with my hair, but with living with sarcoidosis.  I put one foot in front of the next (or, at least, I try to most days) and keep writing, keep trying to lose weight, keep showing up to my marriage and my family.  There’s nothing remarkable about this.  It’s how we all make it through the terrible and wonderful events we call life.  But dyeing isn’t for me.  I’m not opposed to it in principle or think badly of those who do choose to color—and I also reserve the right to change my mind and change my hair color later.  It’s simply that can’t imagine making regular appointments at the salon.  It’s already a feat for me to get there twice a year.  The idea of coloring appointments every 6 weeks overwhelms me.  I need to sleep 12 or more hours a night these days, which doesn’t leave much time for hair care.

More importantly, though, I don’t want to succumb to my vanity right now.  Of course I want to look good and feel good.  But if I decided to dye my hair right now, I’d be doing it for the wrong reasons—because I’m afraid of getting old and looking old.  I want to look my fear in the eye, not choreograph a complicated dance around it.  What lies beneath my horror at finding patches of grey hair isn’t really about my hair color.  It’s about reaching the midpoint in my life and fearing I haven’t accomplished what I think I should have.  It’s about not wanting this life to end.  It’s about not wanting to fall apart.  It’s about not wanting to lose control over my body (or any more control than I’ve already lost).  It’s about wanting to stay young and vital.

I don’t like that I’m still wrestling with my achievement demons—after everything I’ve been through.  I’ve had a lot of crap happen to me, and I’ve done a lot of work…all of which should mean that I’m on a higher plane of existence where I don’t sweat the small stuff and value my life for the joys of daily existence and not for accomplishing stuff, right?  Right?  I guess not.  I’m not a superior spiritual being floating my way to nirvana.  And I’m OK with that.  I like who I am—even though I need to keep working on my perfectionism hang-ups.

So maybe it’s a good thing that I’m going grey and am a little annoyed by it.  It means I don’t want to get old—and that’s a good thing.  It means I care about my body—and that’s a good thing.  It means that I’m able to care about petty vanities—and that’s a very good thing.  I must be feeling better if I can spend time and energy fretting about my hair color.  It’s a sign of progress that I’m not so sick and so much in pain that all I can think about is sickness and pain.  I can be frivolous and silly!  Hooray!  I can be a normal, screwed-up American, obsessed with appearance and afraid of death.  I can fret about grey hair, assuming—Yank.  Yank.  Ouch!— I have any left.

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Home Again

March 12, 2011 at 6:50 pm (Uncategorized)

I’m back home after my vacation in Iceland.

Just writing that sentence gives me a thrill.  Not the “back home part,” but the “vacation in Iceland.”

I thought my traveling days were done—just like my hiking days, my cycling days, my having-another-baby days, my independent days, my life-as-it-once-was-before-sarcoidosis-came-and-changed-everything days.

A little over a year ago, I was lying as motionlessly as possible in a narrow bed in the hospital.  Any movement—even breathing too deeply—caused the pain pooled in my head to well up and then crash down on me like a tidal wave.  The pain came with vertigo that made it feel like the room was swirling around me.  Opening my eyes brought on nausea akin to sea-sickness.  Even worse, were the times I opened my eyes and saw nothing but a terrifying and total whiteness.  Without warning or any discernable pattern, my vision blipped out, sometimes twenty times a day.

The doctors knew that neurosarcoidosis was causing the pain, vertigo, and periodic blindness.  Since 2007, they’d been blasting my immune system with chemotherapy in the hope of chasing the disease out of my cranial nerves.  I’d made it through a grueling year of getting chemo every other week by telling myself that I’d beat this disease if I was tough enough and wanted to be cured enough.  I put all my energy into making it through chemo and vanquishing sarcoidosis.

By the time I was hospitalized last February, it was pretty clear that if anyone was getting vanquished in the battle of Rebecca versus Sarcoidosis, it wasn’t the disease.  I had given it my all, but it wasn’t enough.  I would never improve.  I had lost.  I’m not a quitter by nature, but I was exhausted, out of hope, out of juice, out of fighting spirit.  And I was out of treatments.  I’d swallowed or gotten injected or infused with Prednisone, Methotrexate, Enbrel, Remicade, Thalidomide, and Cytoxan.  Not one of these immunosuppressants had been able to do much more than slow the onslaught of the disease.

And so I lay in the hospital bed waiting for the end.  It probably sounds pretty clichéd, but there you have it.  I was in so much pain, and so tired, that I was done.  I didn’t feel particularly sad, as I lay there.  I wasn’t thinking anything along the lines of, “Well, it’s been a good life, and I sure will miss Jay and Andrew.  But you beat me, sarcoidosis.”  I was beyond thought and beyond emotion.  Sickness and pain will do that to you.  They’ll strip away your feelings and leave you blank.

It took more than exhaustion and pain to bring me to that thoughtless, emotionless moment of quitting.  Getting to that point of not caring if I kept on living happened only after years of sickness eroding my sense of myself.  It’s hard to understand if you’re not in Chronic Town.  Without quite realizing it, the illness devours all the parts of you that aren’t directly connected with fighting or succumbing to the sickness.  Imagine your dreams, ambitions, and habits as deer or some other herd animal that have wandered down from the timber into a valley to graze.  Then picture sarcoidosis or cancer or some other pestilence emerging from the forest, like a tiger or a mountain lion, hungry for fresh meat.   The predator takes the outliers first.  When you’re in a battle for your life, you’ll sacrifice the outliers—the aspects of your character that aren’t related to the fight for your life.

By the time I was huddled in that narrow hospital bed, I had sacrificed much of myself:  I wasn’t a writer anymore.  Or an avid hiker and cyclist.  Or a mother to Andrew.  I wasn’t Jay’s partner.  I wasn’t a daughter or a sister or a friend.  I wasn’t a traveler who had roamed through rural Thailand and climbed the steps of Angkor Wat.  I wasn’t the woman who had lived overseas on a small island in the Pacific Ocean.  I wasn’t dreaming of getting published the New Yorker.  I wasn’t someone who loves reading noir mysteries and poetry.  I wasn’t clever with words.  I wasn’t funny.  I wasn’t in love.

I was just a woman with a disease rampaging through my brain.  I was in pain.  I wanted nothing more than relief.  I would have given up my son and my husband for the pain to stop for an hour.

Thankfully, I got a chance to reclaim myself.  My doctors came up with another medicine called Rituxan for me to try.  It’s not like I was suddenly cured, but I have improved slowly and steadily for a year.  I’m not in remission.  I refuse to even think in those terms anymore because getting well is a lot more complicated than the dichotomy of sickness/remission lets you accept.  I still have days when pain, vertigo, and blindness knock me on my ass.  I’m also awfully out of shape from so many months in bed, and my compromised immune system means that I catch every cold or flu Andrew brings home from school.  But I’m doing much better than I would have dared to hope last year.

As I’m getting healthier, I’m coming alive again.  I’m rediscovering the parts of my identity that I had to scuttle in order to survive.  Now that I’m not marshalling all my resources into the fight against sarcoidosis, I can spend energy writing, reading, practicing piano, drawing with Andrew, cooking Thai food, taking slow walks with Jay.  And traveling.

Thinking of myself as a traveler was an important part of my pre-sarcoidosis identity.  Jay and I lived overseas and traveled extensively around southeast Asia before Andrew was born.  We were able to take Andrew with us to Thailand when he was two, but then I became too sick to make any trips that weren’t to see sarcoidosis doctors.  I can’t explain why traveling was important to me, any more than I could explain why I like writing or cooking, or why I prefer nectarines to peaches.  I simply love arriving in a new place, finding my bearings, walking through crowded streets where I don’t know a soul or hiking on a trail through totally unfamiliar terrain.  I love tasting new food and learning new customs.  I love getting lost in a new city and then finding my way.  I love how even light and air can look and feel different in new places.

Traveling can be addictive.  It certainly got under my skin.  I cried for three days in a row when we had to return to the US from Palau—the small archipelago of Pacific islands where we lived for 18 months.  The only thought that kept me sane during the culture shock that came with re-entering life in the US was that we would do it again—we would move abroad again.  I got pregnant with Andrew just a few weeks after we got back to the States.  But having a child didn’t seem like an impediment to us traveling and eventually living overseas again.  Rather, it would be doubly important and triply fun to show our child how vast the world is, how unique each little part is, and yet how alike we all are.  Jay and I decided that by the time our as-yet-unborn child was in first grade, we would be living somewhere like China or Vietnam.

But except for that one trip to Thailand, the only traveling we’ve done as a family is to see sarcoidosis doctors.  As with so much else that got lost to sarcoidosis, I intentionally didn’t think about not being able to travel.  I pivoted my focus, tossed the dreams of hiking in Nepal or backpacking in Iceland overboard so that I could kick ass in my fight against my disease.  I would not let myself be sad or even disappointed at what I had to give up.

When we first got the idea of going to Iceland (by discovering an extremely cheap airfare and hotel package), and I realized that I was probably well enough to make the trip, I didn’t get excited.  I didn’t tell myself, “Finally! I can return to doing something that I love!”  Instead, I was scared.  What would happen if I caught something on the airplane?  What if my sarcoidosis flared in a strange country?  What if I needed to be hospitalized?  What if my foot bones broke or ankle ligaments snapped again?  What if the customs agents confiscated my medications?  I worried about disappointing Jay and Andrew by needing to go slowly.  I wouldn’t be able to charge up mountains on 20-mile hikes, like I did on our trip to New Zealand before Andrew was born.  I would need extra rest and help, as well compassion and caring from Jay and Andrew.

I didn’t express to myself the source of these peripheral anxieties.  But I was able to articulate it to myself once we’d made it to Iceland.  What if I tried to travel again and failed?  Wouldn’t it be far more devastating to try and reclaim a part of my life and discover that it was gone forever instead of staying home and keeping the possibility open that someday I’d travel again?  It’s easier in some ways to live with past memories of how good things used to be before I got sick than to dive into the life I now have.

Reclaiming myself means figuring out ways to live with my disease, instead of giving everything I have to fighting it and then waiting for it to disappear.

I’ve said that living in Chronic Town means learning to live fully the life you have—not the life you want to have, or the life you think you should have, or the life you could have had.   Of course, it’s always easier to proclaim lofty sentiments like this than to put them into action.

But I’m proud of myself for trying—for pushing aside my worries and perfectionism enough to make the trip.  I had faith in myself, faith in Jay, and faith in Andrew.  It was amazing.  It was a wonderful trip.  Certainly, it was also a new kind of trip.  No scaling mountains or kayaking marathons.  But we did have seven beautiful days exploring a place I quickly came to love.  And I rediscovered how much I love traveling, no matter the limitations.  I can’t wait to go back.

Making the trip was like finding a way back to who I am, or finding a new way into myself.  It was leaving that led me home.

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