Friday, July 29, 2005

Feelin' Like Poop

Yes folks, The Haggis has been feeling like poop lately. (Note my effort to rehabilitate my language on behalf of The Bambina). I've been avoiding writing a post about it on account of its total lameness as a funny, witty or remotely interesting topic. But since I'm going to be here at my doctor's for about 12 hours today, I have decided to afflict you as I am being afflicted. :)

Today I am writing from NIH where I get treated/researched upon/given amazing care for my ongoing hematologic issues. Whenever I have to come here I feel two things: A) Fear and loathing that I'm going to be surrounded by sick people whose presence forces me to accept that I am one of them, and B) After the initial fear and loathing, a sense of comfort being in their presence. It's almost as if the ritual of getting out of the car, going through security, getting my blood drawn, and then heading down the long gleaming hallways into the hematology clinic itself is a mental and emotional transition all its own; a transition from "Person With F'd Up Blood Counts Passing as Healthy" into "Person Who Is Here Today Because Her Blood Counts Won't Keep Up the Charade."

It can often be a difficult transition to make between the world of the healthy and of the sick-to-varying-degrees. I find myself using phrases like, "on the outside," ie, "My doctor on the outside says I should do Y. What do you recommend?" It's almost as if, within NIH, I am in my cocoon where it's safe to just feel whatever I feel that day, which, by virtue of my presence there, is usually "not that great." It is a place where everyone understands why you don't eat off buffets (germs can kill), why you open the bathroom door with a paper towel (who doesn't?!), why people coughing on planes is one of the scariest sounds ever heard, and why some days you just don't feel like pretending you're doing great. Here at NIH "on the inside"--feeling tired, out of breath, exhausted, older than your chronological age, and on many occasions just flat out scared that your physical body is failing you so profoundly--is normal. And, sad as it sounds, there is something depressingly comforting about feeling normal even if it means admitting that your 33 year-old mind, heart and soul are trapped in a body with the bone marrow of a 75 year-old (and a pretty unlucky 75 year-old at that!).

As I thought about this transition, I wondered why I feel so compelled to keep the lid on how I'm feeling physically when I'm "on the outside." Why do I work so hard to act "normal" when sometimes I'm actually kind of tired or feeling sorry for myself that I will never be able to run a Mother-Daughter 10K or whatever. Intellectually I want to answer that it is because I don't want to be a burden to the people who love me. Mostly true. But honestly, I think the real answer lies more in feeling some small sense of shame that I have something that makes me not perfect, not fabulous, not carefree, and not like everybody else. (I can hear my brother saying, "Oh, were we supposed to be under the illusion that you were perfect? Oh okay. Shock! Horror! You're not perfect! Mostly because you have trouble getting over yourself...")
My brother is funny, but some part of me obviously believes that admitting you struggle with a disease is tantamount to admitting that you have not met expectations, and never will be able to.

So why am I "admitting" all of this now, besides a surfeit of time in a clinical setting and a dearth of good magazines? Well, because I believe that once you tell someone your Dirty Little Secret, it's no longer dirty or a secret. I also believe that once you tell the other ostensibly "normal" people about the thing that makes you not normal, you learn that they all have something that they carry around which they think separates them from "normal" too. In that realization lies the freedom to just be yourself--whomever and however that may be. So--onward to my Dirty Little Secrets:

1) I have Aplastic Anemia
2) Some days I feel like crap
3) Most of those days I pretend I don't feel like crap; but not for my own benefit which would be positive, but rather for others' benefit, which isn't.
4) Like "Richard Gere" and "Gerbils" or "Michael Jackson" and "Young Boys," I live in fear of being defined by a disease; that someone will say "E" and they'll immediately think, "Oh poor sick dear that she is..."
5) I know that, short of being hit by a bus, I will more than likely die of Aplastic Anemia.
6) That knowledge scares me; the fear of it colors a lot of how I choose to live.

and, because you know how I am, big bold confessions notwithstanding:

7) If you try to speak to me about this, I will probably change the subject.

So what's my point? Turning The Haggis into some ghastly maudlin self-indulgent online diary of diverticulitis, myasthenia gravis, hammer toes and simple chronic halitosis? I'd rather run naked down the DC United pitch mid-match. (Oh wait...never mind)!

My point is to say, by way of revealing something about myself (which is totally against store policy, not my SOP, and strongly discouraged in the most emphatic terms), that sometimes sharing a perceived weakness with others gives them the freedom to do the same. Further, it forces you to acknowledge that you are not alone, not an island, and--most critically of all--not a burden to people who love you. Yes, there is a risk in letting people in, but the risk of not letting them in (and we've all known that someone who went his or her grave still "in character") is to risk never knowing what it feels like to be truly loved and cared for no matter what, to put yourself out there with all of your seemingly terrible flaws and to have the people around you say "so what?!"

So--if you are currently operating under the fiction that someone else has The Perfect Life for which you will always press your face up to the window but will never be able to acquire because of your shortcomings--why not just take a leap of faith with the people who love you? Tell them your Dirty Little Secrets (don't post them here!), and I bet you will get a big "so what?!" a heartfelt, "we love you anyway" or [if your brother is like mine] a swift kick in the keister to deflate your prodigious sense of self-involvement.

Yeah, you'll feel a bit lame and maybe a bit embarrassed when you finally tell people that you can't always meet their expectations. But you will be so glad you did it when you finally realize, once and for all, that the only impossible expectations you haven't been meeting are your own.

Program note: For those of you who are still reading through this magnum opus, I want to assure you that I will never Drink and Drive, Put a Knife in the Toaster or Write Another Post While Trapped in a Doctor's Office.


Vigilante said...

I've always considered you awesome, E.

I just never, before, had an idea as to how awesome.

Raine said...

I sympathize with you E, although I can't say that I've ever known what it's like to have an affliction like Aplastic Anemia. I can tell from the small snapshots that appear through your blog that you aren't taking the illness to heart; you're still living, loving, and everything else that healthy people do. That, to me, speaks of great strength in both character and will, and I hope the bambina picks up a lot of that, and many other of your good traits as she grows up.

I'm sure she'd be proud of momma.

Anonymous said...

This past weekend I saw a woman who had a bracelet that said - "Those who look outside dream; Those who look inside awaken". I think you are great.


Anonymous said...

I think this post was put here for my benefit. I was just diagnosed with Crohn's Disease and have been wrestling with so many feelings about how my life is now forever different. You should write a book about this because you managed to say what I've been feeling and I imagine that you would help a lot of others too. I guess it doesn't matter what the disease is, when you live with something life changing it also changes you.
I found this blog at just the right time. Thank you for writing it.

Vigilante said...

Ditto for me. I're read this more times than I've counted.

Cameron Truxillo said...

Excellent, that was really well explained and helpful