Blog Archives

Open Letter to Patti Smith, Day One

Dear Patti–

I’ve been trying to write to you for months now. Things I should tell you follow behind me place to place like a trail of breadcrumbs, or a swarm of bill collectors. I type and delete, type and delete, type and delete, all the time my mouth so full of all I want to say I can barely swallow. But, here–I’ve made a start.

I’ve been thinking lately that maybe I shouldn’t have fought so hard to keep my uterus, when they found all those fibroids swarming inside me and I looked at the ultrasound and saw none of the usual things–no tiny heart, no nascent fingers, no promise. Just my blotted copybook of a uterus, colonized yet functionally empty. I didn’t know till then how much I wanted a child and though I knew I was running headlong toward the fertility cliff, that desire, that need roared up in me, desperate and hungered. And I’m telling you this not because you know what it’s like to not bear a child, but I suspect you know about hunger and need and how they can pulse inside you, a secret Morse code for which noone’s given you the handbook or answer key. But that was then–which is what we say about everything eventually, isn’t it? And now that I’ve stumbled off the fertility cliff and I find I don’t feel quite as “less than” as I thought I would, I’m wondering why all the fuss? True, I couldn’t quite bring myself to paint an infant onesie at a friend’s baby shower, but I was there and didn’t have to remind myself to smile so that counts as “this too has passed,” doesn’t it? What I’m really asking is how much of what I tell myself is true because it’s grown into fact and how much is true because it has to be, and is it also true that there’s a difference? is it true that that particular hunger has passed, or have I just numbed it by thinking of clever hashtags for perimenopause and by crafting loud comedic groanings about hot flashes? What matters more–what we know is true, what we say is true, what we need to be true? Or am I still asking the wrong question?

Advertisements

Why me?

So far over the last two decades or so, in terms of health challenges, I’ve racked up a corneal transplant, near-fatal pneumonia, getting hit by a car at the end of the same year I had the near-fatal pneumonia, and now I have a uterus full or tumors with a (very) slight chance that those tumors may be cancerous.

While I have allowed myself the occasional wallow in self-pity, I haven’t really asked “Why me?” because why not me? And let’s face it—like most people—I prefer being thought of as noble and brave, rather than whiny. I mean I hate being thought of as whiny so much than when I indict myself for such behavior I default to the British term “whinging” because posh whininess is better than regular old, feeling sorry for myself whininess any day.

That all being said, I do think “Why me?” can be an important question, if you can resist the move toward self-pity or blame when answering it. In my case, I think one of the reasons these things happen to me is because I have a gift for articulating them. I can write about the tension inherent in the caregiver-patient relationship or the loss of identity you feel when your body betrays you or what it’s like to have to make decisions about fertility as a single woman of a certain age. Especially with the fibroids issue, it’s been somewhat amazing to me how many women I’ve now spoken to who have struggled with the tumors, with the heavy periods, with the shame that can come from those heavy periods. Yet, until I was diagnosed myself, I wasn’t really aware of how epidemic they were among women my age. I’m actually the perfect person to go through this because I can give voice to the experience, I can bear witness for others who may feel they are alone in their grief, their shame, their fear.

I have long thought that while my writing was a way to see me through my own emotional and physical crises, that the work was also there for the other, for the woman who was waiting to be seen and heard, to know that she was not alone in her suffering, to know that what she was feeling was legitimate and could be articulated. I think about how often I have recognized myself in a piece of writing—the loneliness of the young Jane Eyre, for example—and I hope that in some small way as I write my way through my physical challenges, I am creating a place for someone else to recognize herself.

I do not mean to sound like a Pollyanna, or a martyr. I do not want to suffer. I want to at all times feel 100% healthy—emotionally, physically, mentally. But if by documenting the days, the weeks, the long shadow times when my well-being is disrupted, I am helping someone else, well, then, I guess it’s a good thing that it’s me. Why me? Because I have the gift of feeling out loud, and that, I hope, for someone else, has made all the difference.

A return to normal?

Twenty-three days still to go till I have my uterine surgery and I’m beyond ready for it be April. I’m ready to have my wound be healed up, I’m ready to not look pregnant any more, I’m ready to be exercising again and working toward my weight loss goals, I’m ready to not be worrying about where I sit for 10 days of every month and having to cancel engagements at the last minute cause I’m woozy from menorraghia, and I’m definitely ready to buy new sheets and have my only worry be that they’ll become ink-stained because I insist on writing long-hand in bed. I’m also ready to have my brain back. Currently it’s abuzz not only with my usual to-do lists for work, but also “write down French Press instructions for Mom” and “schedule someone to help with laundry and making the bed” and “make an e-mail blast list for people who’ll want to know how surgery went.” I’m also ready to be rid of the low-grade anxiety that starts my heart racing at the oddest of times, like when I’m trying to enjoy an episode of Bones and one of the characters whips out a scalpel.

In other words, I’m ready for life to return to normal. I keep cautioning myself, however, that I won’t actually feel normal, or more precisely, that, for me, normal doesn’t mean asymptomatic. I’ll have lighter periods if all goes well (and maybe no periods at all if the only option once I’m on the table is a hysterectomy), I’ll be slimmer, and I won’t be chronically exhausted. But I’ll still have trouble breathing on warm moist days, I’ll still occasionally have trouble not breathing heavily while walking uphill no matter how diligently I’m working out, and I’ll still occasionally get dizzy on those days when both my allergies and my asthma are conspiring a to keep my intake of oxygen to a minimum.

I wish I could say I am ready to just accept my battered body the way is, but I’m still struggling with that one. Even before the fibroids became an issue, I found myself frustrated and angry whenever I had an asthma attack. Sure I knew I was incredibly blessed to still even be breathing and above-ground. Sure I knew that an exacerbation of my lung issues were par for the course during pollen-heavy or humid times of the year. But still, I’d convince myself, on the long stretches of days that I felt great that I was finally well. That the next time I went back to the doctor, she was going to tell me to ditch my inhalers and stop taking the laundry list of medications that is usually way too long to fit on the “what medications do you take” part of any medical intake form.

I wish I could tell you that after the surgery, I’m going to return to living with grace. And maybe some days—hopefully most of them—I will. And as for the other ones, I’ll just keep limping through them till grace kicks in again… as it always does.

Smiles everyone!

I have had a million ideas about what to write tonight. A post about three books that have changed my life, a reply to this beautiful post my sister wrote about me yesterday, a list of my favorite quotes. But it’s another one of those nights where I want to write about everything and nothing at all. I confirmed the date for my surgery this morning (February 8) and though I knew it was coming, something about finalizing it, about making it real has knocked me slightly off balance again, and I feel like I’m looking through my world via kaleidoscope, unable to separate anything out into a single fixed image.

I’m proud of myself that I have already started to check things off my pre-surgical check list (including making a pre-surgical check list.) I have an appointment with my primary care physician to get my pre-surgical labs, I have a ride secured for my post-surgical follow-up appointment, I’ve submitted the paperwork I need to get donated leave from my colleagues if I don’t have enough vacation and sick time to cover my time off, I’ve alerted my boss, his boss, and my direct colleagues, I’ve already done some of the work I’ll miss when I’m out, I’ve downloaded a health-care directive so I can give my sister the power to make decisions for me while I’m on the operating table, I’ve pre-registered with the hospital, and I’ve lined up family to come stay with me immediately before and after the surgery. In other words, I have not followed my usual m.o. which is to become so overwhelmed that it’s like I’m moving in extra slow-motion incapable of planning or even completing even the tiniest of tasks. Granted, it’s taken every bit of strength I have, but still I’m moving forward.

On the other hand, I haven’t yet figured out what to say to well-meaning friends when they point out how improved my quality of life will be after the surgery. I want to scream at them—“Yes, I know that. But that’s not the point at all.” I know they’re just trying to be kind but really, I want them to know I haven’t quite gotten there yet. I’m still in the place where it’s scary as all hell, where I’m going to willingly let a man apply a scalpel to my abdomen and then root around in my insides cutting stuff out for a couple few hours. I’m still in the place  where I’m obsessing over the part on the post-op instructions where it tells you it may take a couple of days for your intestines to “wake up.” In other words, I’m nowhere close to the point in time where I can appreciate the destination given that I know how awful the journey to get there will be no matter how well things go.

I also haven’t yet figure out how to be okay with my obsessive need to keep writing about this. Yes, I know that writing is how I figure things out. And were I just writing about this in my journal it wouldn’t bother me at all cause I know how obsessive I can get about a particular topic. But it makes me feel unexpectedly vulnerable to take that obsessiveness public. I suppose it’s there to some extent if you read a collection of my poems, but that feels different somehow. This feels a little more self-indulgent somehow. But yet, it feels like it wouldn’t be truthful not to write about the myomectomy and everything that means as it’s what’s on my mind, what I keep returning to over and over again no matter how much I try to distract myself by coming up with other things to write about. And I did promise myself with this iteration of the blog that I would make myself tell the truth. No matter what. That I would write about the area where I felt the most heat, even if it’s what I wrote about yesterday and the day before and even before that.

So, that’s where I am. Checklist in hand, butterflies starting to colonize my stomach by the thousands though I still have weeks to go, and acres of journal pages and blog posts to document the journey in.

Sigh…

First Comes Mourning

I spent my morning in the wilds of Rockville seeing a specialist to see if my fibroids could be removed laparoscopically. I was hoping he’d say yes, in great part, because the surgery would then have been done via robot and, come on, who doesn’t want to be able to say they’ve been operated on by a robot? I did, however, have an inkling going in that because of the size of the largest mass that laparoscopic surgery, which would’ve meant basically cutting the mass into smaller pieces so it could be extracted through tiny incisions, wasn’t going to be an option for me. Turns out size wasn’t the doctor’s concern at all; rather there was a line in my ultrasound report that hinted that there was a slight possibility of cancer cells, and so it’s best to remove the mass intact so that if it does turn out to be at all cancerous, there’s no risk of accidentally spreading it throughout the body because the surgeon’s sliced and diced the tumor into little bits. And while the fact that Dr. B raised the “c” word made me face a possibility that I’d steadfastly been avoiding, it’s actually a conversation that happened after my exam that was more troubling.

Somehow Dr. B thought I wanted a hysterectomy while I was looking for a myomectomy, which would remove the fibroids but leave my uterus (hopefully) intact. It was while I was filling out paperwork to secure my surgical date that I noticed the error. Dr. B popped in again to talk to me and said that he would be happy to do just a myomectomy, HOWEVER, I had to understand that given the size of the mass I might end up with a hysterectomy as the only course of action once they had opened me up and could really assess the situation.

My feelings about my uterus have always been ambivalent. It was the reason I was grouchy once a month, but, for the most part, except for one abnormal pap smear in my early 20s, it’s behaved itself quite admirably. As for kids, well, when I was in college, I was convinced that I wanted to be a mom, but as the years went by and I remained unmarried—a prerequisite for me when it comes to having children—I decided I was fairly ambivalent about the situation. I figured that if my husband wanted kids, we’d have some, and if he didn’t, we wouldn’t. Also, having watched a dear friend struggle with the heartbreak of fertility treatments that just didn’t work over a period of several years, I decided fairly early on that if I couldn’t get pregnant the old-fashioned way, I had no interest in pursuing assisted options.

Given all that, I was surprised, after my fibroids diagnosis shortly after my 40th birthday, to find out that I did want kids. In the initial consultation with the gynecologist, the first option she asked me about was a hysterectomy, which would immediately relieve my symptoms. The obscenely heavy bleeding during my period, the chronic anemia, the heartburn, the difficulty breathing that was unrelated to my pneumonia-generated issues, the insomnia. But I found myself telling her that she needed to only give me options that meant I could still conceive a child. I had taken the whole day off from work, even though my appointment was in the morning. The doctor’s office was in Takoma Park and I had planned to walk to Old Town Takoma and treat myself to lunch cause I believe everyone deserves a treat after poking and prodding from lab-coat types. As I wandered the long stretch of Carroll Avenue from Adventist Hospital to Mark’s Kitchen, I was overwhelmed by my longing for a child. It occurred to me perhaps my ambivalence was only another protective spell, a way to stave off the true grief at not having found a partner though I’d fully expected two decades prior to graduate with a Mrs. degree, or at least to “earn” one fairly soon after graduation.

For various reasons, I did not go through with the surgery that year. And sometimes, I think it’s a minor miracle, or maybe not so minor, that this time around, I’ve been researching my options and making doctor’s appointments to find out which procedures are viable for me if I’d like to keep my womb.

I’ve had more than a few conversations with my best friend D, and she doesn’t quite understand why I’m so attached to my uterus. I sort of see her point given how many sheets I’ve ruined because of the fibroids, or how many overnight visits to friends I haven’t made because I’m scared of damaging their furniture, or how many times I’ve spent the day dizzy and semi-delirious at work because my flow has been so relentlessly heavy that I’ve done a good approximation of “bleeding out.” But somehow it feels like if I give up my uterus, it means that I give up my chance at marriage, which makes absolutely positively no sense to my brain, but is absolutely positively the view my heart takes. I am terrified of the emotional devastation I will feel if I come out of anesthesia and Doctor B. has to break it to me that my uterus is no more.

Do I know that I can adopt or foster? Of course, I do. Do I know that given the age range of men I’m looking to date that there’s a good chance I’ll have stepchildren to love and mother? Of course, I do. But again, that part of the conversation’s taking place in my head. My heart really can’t see past the possibility of the emptiness inside me. Somehow she seems to think that not only babies, but also love is born in the middle of me, at my center.

I can’t help but think that maybe it would be easier if there was some ritual, some way to grieve this loss. Even if I don’t lose my uterus in the surgery, the fact is I’m turning 43 tomorrow, which according to most gynecologists is when a woman’s fertility significantly plummets. The italics aren’t mine. They’re the way my primary gynecologist emphasizes the word every time she reminds me that my biological clock is winding down. And yes, I know women have conceived in their 40s, but the fact remains that for women who have never been pregnant, it’s a possibility to have baby mojo past that point, but not a probability. (And yes, for my believer friends, I know that God can make anything happen, but I’m talking about the purely biological view right now.)

Don’t those of us who didn’t make the choice to not have children, but for reasons of just not finding the right person in time, or medical issues, or whatever reason, that’s the end result get to grieve that loss? There should be some symbolic way of saying goodbye to our fertility when we’re desperate to hold onto it for a few more years but biology or health issues won’t allow. There should be a way to mourn that hollowness radiating from that place where you were sure that some day you would feel the squirrellings of life.

I’ll end here with the fact that I know some of you will want to post comforting things. Sure, it could be worse and I’d be better off worrying about the cancer possibility if I’m going to worry about something. Sure I can adopt. Sure my life can be—and is—significant and meaningful and worthwhile irregardless of the state of my uterus or whether or not I have kids. But none of that should mean that I don’t get to grieve. That I don’t get to fill my mouth with wails of grief and loss, to sob an ocean of tears. Morning will come, but first comes mourning.

%d bloggers like this: