Friday, June 13, 2008

Oh and By the Way,

I met my stem cell donor.

DF held a donor appreciation luncheon and they asked me to speak about my transplant and to meet my donor. At first I said "no thanks" because the prospect of meeting my donor in front of an audience was just a bit too "Montel Williams" for my liking. But when they said that I could meet her beforehand, I said okay. Mostly on the theory that Bambina would be in the audience and I was not going to have her see Mama lose her shit on stage at the age of four. And also because, notwithstanding my blogging proclivities, I still kind of keep my cards close to my vest in matters like this.

It happened a couple of weeks ago, but I haven't written about it because I haven't really felt like talking about it. And even though I met her at a well-attended luncheon event I was still feeling a bit private about it all. After all, what do you say to or about someone who saved your life? And, to be honest, although I've thought of her fondly over the past year, it has been in the abstract. Not to mention that I've had so many other things on my plate that ruminating on the identity or personality of my donor was not really high on my list of things to do, as ungrateful as that may sound. So I didn't have any image of her as a person or any preconceived notions about her going into this. In fact, leading up to the luncheon, I was a bit nervous that she'd be a fruitcake or a religious freak or just anyone that I'd be cringing to have in my life for the rest of my life. Call it a Jerry Springer Meet-Your-Birthmother show or something, but I was just hoping it wasn't going to be all "we don't have anything in common except our stem cells" awkward.

So anyway, I'm writing about it because it's about to be up on the DF website and then we're going to be on NESN later in the summer as part of a donor recruitment drive with the local sports teams. So I figured if you're going to see me online and on TV, it's probably time to get over my perceived privacy issues. And anything that gets people to sign up for the registry is worth a little bit of me stepping out of my comfort zone.

I won't say too much about my donor since it's not for me to publicize her on a blog. But I will say that she's pretty remarkable. I'm the second person she's donated to. And she only signed up as part of a drive to see if she might have been a match for a family friend. So it's pretty illustrative of someone's honor that they sign up with the intent of helping someone they know, and then agree to follow through--not once but twice--in the aid of a complete stranger. And she's only 30 years old. How many of us can say we saved someone's life by the age of 30? And more to the point, how many of us can say we saved someone's entire world?

To that end, here is what I said at the luncheon:

16 months ago I was feeling like the unluckiest person on the planet. As a result of toal bone marrow failure I was so sick that I had a daughter I couldn't parent, a husband I couldn't do anything with or for, a business with friend we had to close because I was too sick to leave the house. I spent the the greater part of my days in and out of hospitals for transfusions, since I was producing no blood cells of my own. And the times I wasn't there for a scheduled visit, I was in the ER because I had no immune system and was spiking fevers and infections on a weekly basis, all of which could easily have killed me.

Looking back, our whole existence was focused on my failing health, on managing my almost-daily emergencies. At the time, said to husband "this is a miserable way to live." More accurately it was a miserable way to wait to die. Even the trip to Dana Farber for our consult was a massive undertaking. I was too sick to get on a plane, so we drove ten hours nonstop from DC with a map of all ERs en route just in case I spiked a fever on the way. It was just constant stress and fear with seemingly no end in sight.

One night in particular, I was in the hospital with a 104 fever, it was 3am, and we were having all those conversations with doctors that you really do not want to be having: "advanced directives" "anyone you need to call?" "not sure how tonight is going to go..." I remember that night because all through my illness I had always prayed for a cure. I'd always said, "God, there has to be a path for me, just show me the path and I'll do anything I need to do to walk it. I'll drag myself by my fingernails, just show me the path." That night I realized that I'd given up praying for a cure. I was just praying to live through the night because I'd put my daughter to bed before my fever spiked, and I was coming unhinged at the thought that she would ever think I'd just left her in the middle of the night. I think whatever age you are when something like this happens or whatever your background, you can probably imagine that praying you live for a couple of hours so you can see your child's face is just about as dark as you ever need your life to ever get. And we were there. We were looking into the abyss.

Fast forward to today. A happy day. 12 months after my transplant, 12 months made possible by this wonderful woman. 12 months in which I've learned that I am not now nor have I ever been the unluckiest anybody anywhere, and in fact quite the opposite.

Because that path I prayed for led me to DF; that path IS DF.
And how lucky am I that here at DF I hooked up with the amazing Doctor, who not only had heard of my sad little rare disease but had treated people with it.
And how lucky that I had the nursing care at DF and the Brigham. Nurses who gave me the highest level of technical care while ensuring my dignity as a person, which is no small feat if you are familiar with the numerous indignities of a transplant.
And of course, today: how lucky am I that I was put on the earth at the same time as this woman, who with no thought of any return for herself, no sense that anything would come her way as a result, and on what in my case was a moment's notice, gave of herself to a complete stranger. And if that doesn't make you feel like the luckiest person on the earth, I simply don't know what will.

Which brings me to my second point. In Judaism we have a belief that "He who saves a single life, it is as if he has saved the entire world." When you think about all the people who love the person you saved, who rely on the person you saved, whose lives would be so fundamentally different without the person you saved, you really start to grasp the significance of what you have given as a stem cell donor. And that's what I hope you will all take with you today and carry with you for the rest of your lives: That you saved someone's life for sure. But more importantly you saved their world. And you need look no further than that table to see a small example of my saved world: Four generations of it. (I then talked about the people at the table).

And, so, {donor} I'm just gonna say it: I've just met you and I love you! It's our Oprah moment! I have thought about you every single day since my transplant and have considered you a member of our family since then. {donor}, I love you because you saved my life. But more importantly and far more significantly, I love you because in saving me, you saved my entire world.

Because now I will get to grow old with this very cute man right here. And, most importantly, I will get to see my daughter grow up. Because those 16 months ago, I was trying to come to terms with the fact that I was going to miss so much of her life. And it was easily the blackest, darkest, most miserable and heartbreaking experience of my entire life, and a place I never want to return. But now I will get to be her mom just like I was always meant to be. And that is a debt I can never never repay you. And all I can say, however meager-sounding but no less deeply-felt, is thank you. Thank you for saving my world.

And, for the record, my donor and I got along like a house on fire. :)

1 comment:

Utah Savage said...

This is one of the most beautiful pieces of writing I have ever read. Without knowing you, I now know how generous and loving you are, how much you love your daughter and your husband. Now you have a new family member who will forever be changed by your words, you gratitude your intelligence, your wisdom. And probably a new career as a spokesperson for the donor program. I look forward to seeing you and saying I know you too.