“I PRAYED ON IT, AND THE LORD TOLD ME ‘NO’.”

{warning: Very long, very rant-ish, did I mention very long? And even some bad words. And very long.}

I’ve gone back and forth on possible ways to type this particular journal entry. Initially, I had this really great song called “Shut Up and Smile” I planned to play, and I wanted to do a humorous entry about how when people bug me with their idiocy, I have to remind myself to (can you guess?) shut up and just smile. I intended for it to be a light-hearted entry, and started typing, only to go off on this tangent, which was not about humor and lightheartedness, but more about how stupid, selfish, shallow people really make me livid. So I deleted the whole thing and started over, reminding myself, “Self, remember, you catch more flies with honey than with vinegar”. But I hadn’t gotten through the first paragraph before I was venting again, and ripping into people, so I started over again. And again. And finally came to the conclusion that me throwing the equivalent of an internet temper tantrum wasn’t so entertaining after all. But, this just isn’t a subject I can make light of, so here goes:

Last week I attended a training session to become a volunteer for the National Bone Marrow Registry. There is a local organization here in Macon called Jay’s Hope, set up in memory of Baby Jay. Jay’s Hope is organizing bone marrow drives in and around the town where I live. Specifically, to try and find bone marrow matches for two teenage boys in our community; cancer patients {just like Kendrie} who, quite bluntly, are going to die unless matches are found so they can have transplants. So, Jay’s Hope is organizing these drives with the hope that someone will match one or both of these boys, or in the broader picture, match any of the thousands of people who are on the waiting list for a transplant. Looking desperately for a match. In a life-or-death situation, if a match isn’t found. Just to be sure I’m making myself clear: People DIE waiting for a match.

• A few statistics: Every year, more than 30,000 people are diagnosed with leukemia or other life-threatening blood diseases.

• Only 30 percent of all patients in need of a transplant find a matched donor within their family.

• On any given day, more than 3,000 patients are searching the NMDP registry for a matched donor.

•The National Marrow Donor Program is the hub of a worldwide network of more than 500 leading medical facilities in marrow and blood cell transplantation. Through this network, the NMDP facilitates an average of 200 marrow or blood cell transplants each month and has helped give more than 20,000 patients a second chance at life.

• Each year more than 35,000 children and adults in the United States are diagnosed with diseases for which a marrow or blood cell transplant could be a cure.

• A transplant requires matching tissue types between patient and donor. These tissue types are inherited, but 70 percent of patients do not have a matched donor in their family.

• These patients and their physicians can turn to the NMDP for help with the search for a match and for support through every step of the transplant journey.

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So, ok, that’s that. We’ve established **why** this is important. These are people whose lives are literally in the balance, and if no-one in their family is a match, they turn to the registry. What if no-one there is a match, either? They sit, and wait, and get sicker and sicker, and hope someone who *is* a match signs up. Before. It. Is. Too. Late. I signed up to be a marrow donor over ten years ago, and I’ve never been called, but that’s ok. At least I know I’m on the list and if I could ever help save a life, they’ll know how to find me.

I know it’s clichéd, but imagine how you would feel if it was someone in your family … YOUR CHILD … looking for a match and not finding it. It breaks my heart to think of these two local boys, and the fear that their families are facing. The technology is out there, ready and able to possibly save these kids, but without a matched donor, it doesn’t do anybody any good. The clock is ticking, for them, and for thousands of others.

I was pleased when Cindy, Jay’s mom, contacted me to tell me of the bone marrow drives they were spear-heading and ask me if I’d like to help out. I went to one meeting to learn more about their plans, then to the training session. Then, I was scheduled to help with my first drive last weekend at a local church.

But, first, back to my training session. Since the bone marrow drives where I’ll be volunteering are already set up at local churches, there’s not much to be done by way of recruitment. Bone Marrow Registry representatives speak to the congregations, and those who are interested and willing to sign up will come to our pre-arranged area. Me and the other volunteers will do various tasks like help fill out paperwork and forms, answer questions regarding medical eligibility, help with collection kits, man the Requisite-Informative-Video station …….. and the job *I* want: passing out snacks and drinks afterwards.

WHY? You might ask, WHY do I want that job? Despite what you might think, it’s not because I’m lazy or because I want to sneak cookies for myself (ok, well, I’ll possibly sneak a cookie or two) but really, it’s not that.

It’s because while we were watching the training video, there was a part about how to handle people if they decline to sign up for the registry, and WHY IT’S OK IF PEOPLE DON’T WANT TO SIGN UP. A whole big extensive session about how no-one should ever feel pressured to sign up, and it’s such a personal decision, but one of huge responsibility, because what if someone signed up, actually wound up being a match for someone, and then backed out? Believe it or not, that happens, and the patients and their families, are, obviously, devastated.

So, I’m watching this portion of the video about how it’s OK if someone says no, thanks, they don’t want to be a donor, it’s really, really ok, no pressure, and all I can think are two things:

1) Why the HELL would someone NOT BE WILLING to be a donor? And,

2) Why the HELL would someone agree to be a donor and then change their mind after they were found to be a match?

If you can’t be a donor because of age restrictions, or personal medical history, I can understand that. There are a LOT of medical conditions that make a person not eligible to donate, and that sort of stuff can’t be helped. Blaine and Kendrie? Can NEVER be donors. But some of the reasons people were giving in this video (actors, just pretending, to help us prepare in case we encounter the same reasons) were just obnoxious. The only thing MORE obnoxious was the eye-rolling and indignant snorting that I was doing at my end of the table, because of how annoyed I was with the people in the video and their lame-ass excuses. Here are a few examples:

Person says, “I’m really scared of needles, I don’t think I want to donate.”

I’m supposed to say, “Well, I understand. The actual procedure to sign up is a cheek swab, no needles at all. But of course if you were ever found to be a match, there would obviously be needles involved. So if you’re afraid of needles, and don’t want to, we completely understand.”

What I would be more likely to say, “You’re scared of needles, you big baby? Oh, cry me a river! Do you have any idea how many needles these cancer kids get stuck in their arms, legs, chest, back, etc? And they don’t have any choice! So suck it up and help your fellow man, you asshole.”

Person says, “I’ve heard the operation to get the bone marrow out is painful. I don’t like pain. I don’t think I want to donate. Plus, I don’t really have the time for it.”

I’m supposed to say, “Well, there is some discomfort involved in a bone marrow aspiration, but it’s done under local or general anesthetic and most people feel back to normal in a few days. You most likely wouldn’t miss more than a day or two of work. But if you don’t want to, we completely understand.”

What I would be more likely to say, “#($&(#&$(#*&!!!! You’re willing to let someone DIE because YOU don’t want to experience any discomfort??? Or take a day off work? Are you THAT freaking important??? Give me a break! You are the most shallow, self-centered person I have ever met in my life! Get over yourself!”

And various other fantasy-conversations, all of which encompass me harassing people about how I hope THEIR kid never gets sick and needs a transplant, and do they think people with leukemia or lymphoma have any choice about being scared of needles or not liking pain? Or how when cancer kids’ veins are hard to stick, the nurses just keep digging until they get one because it’s not like they can elect not to get chemo or medication or transfusions that day. And how MY kid has had NUMEROUS bone marrow aspirations and she had no choice about it …..

It’s the same thing as people who refuse to donate blood. One stinking hour of their time, and they can’t be bothered.

I’m telling you, Seriously. I need a valium. Or some blood pressure medication. Or anger management classes. Or some vailium. Did I mention valium?? Maybe liquor.

It made me feel a little better that I was sitting with another cancer mom that I knew from our local support group, and that she felt the same way I did. Or at least she pretended to. In hindsight, she might have just been scared of me and my violent reaction, and agreeing with me out of fear.

So do you see? Do you see why I need to do nothing more than pass out cookies and juice? I’m not so sure that I’m the person *anyone* wants representing their volunteer group.

I feel strongly about this. Perhaps a little too strongly.

The drive was last Sunday, and we signed up over 140 people as potential donors --- that is fabulous!! I had to (and by “I”, I mean the group) turn down a few people for medical reasons, but I thanked them sincerely for their interest and willingness. I had one lady tell me she would volunteer for these two local boys, but she didn't want to be tested for anyone else and where should she mark that on the form? And I had two young ladies who changed their minds about signing up after asking me to describe what a bone marrow aspiration was really like. I told them honestly that since I have never had one, I don’t know, but that when my FOUR YEAR OLD DAUGHTER used to get them during her CANCER TREATMENT, as long as they gave her general anesthesia, she was back to normal by later that day. Trying to imply, obviously, that if a (ahem) FOUR YEAR OLD can do it, surely you can, too.

But then a fellow volunteer, one who actually attends the church we were at, told me she turned to another woman in the congregation earlier that morning to ask if she was going to sign up, and the woman said (and I quote): “I prayed on it and the Lord told me ‘no’”.

Really.

Seriously?

The Lord told you no???

And that has stuck in my craw for a week, hence the reason I'm not able to journal with mirth about my own lack of empathy.

So then, I was driving around town after the drive, listening to my Trans-Siberian Orchestra CD, Beethoven’s Last Night, which I love, love, love enough to marry, when one of the songs really touched me, and summed up this situation perfectly. I won’t give you the entire rock opera storyline, because this journal entry is too long already, but the gist of it is this: Beethoven, on his final night of life, has to choose between letting the Devil have his soul and his music forever, or saving the life of a child. This song represents Beethoven’s struggle over what his moral responsibility is, to this child he’s never seen before.

And that’s what these bone marrow drives are about. Our responsibility, as decent human beings, to help people who need it, if we possibly, possibly can.

Here are the words to the song, though. I find it incredibly beautiful, both the music and the message:

(by Paul O'Neill
Music By Paul O'Neill, Robert Kinkel, & Jon Oliva

Trans-Siberian Orchestra Lyrics - Who Is This Child Lyrics)

[BEETHOVEN SINGING]

WHO IS THIS CHILD
THAT I'VE NEVER SEEN BEFORE
WHO IS THIS CHILD
THAT I'VE NOT SEEN TILL THIS DAY

WHO DARES TO FALL ASLEEP
OUTSIDE MY DOOR
IF WE SHOULD WAIT AWHILE
I'M SURE SHE'LL GO AWAY

TO BE INVOLVED WITH THIS
WOULD SURELY NOT BE WISE
FOR IN THE FINAL WORD
SHE MEANS NOTHING TO ME

I LEARNED THE TRICK IS
THAT WE JUST AVOID HER EYES
AND THE QUESTION
WHAT SHE MEANS TO ...

WHAT IS THIS LIFE
THERE WILL BE OTHER LIVES
SOON TO ARRIVE
SURELY SOME WILL SURVIVE
SHE IS BUT ONE
AND THERE ARE MANY MORE
EACH THE SAME AS ANY OTHER

WHO IS THIS CHILD
WHAT DOES SHE MEAN TO ME
I CLOSE MY EYES
AND STILL HER FACE I SEE

SHE IS BUT ONE
HER KIND IS EVERYWHERE
CAN'T YOU SEE THERE'S NO WAY I SHOULD CARE

I NEED A MOMENT NOW
I HAVE TO CLEAR MY MIND
THERE IS A LIMIT LORD
JUST TO BEING KIND

THERE IS NO WAY IN LIFE
THAT EACH CHILD CAN BE SAVED
SHOULD I BE LOOKING WITH REGRET
AT EVERY GRAVE

THERE ARE NO GUARANTEES
IN LIFE SHE SHOULD BE WARNED
I'M NOT RESPONSIBLE FOR
THIS CHILD BEING BORN

I'M NOT RESPONSIBLE
IN ANY KIND OF WAY
FOR EVERY CHILD THAT LIFE CAN GATHER

WHAT IS THIS LIFE
THERE WILL BE OTHER LIVES
SOON TO ARRIVE
SURELY SOME WILL SURVIVE
SHE IS BUT ONE
AND THERE ARE MANY MORE
COULD THIS ONE LIFE REALLY MATTER

WHO IS THIS CHILD
WHAT DOES SHE MEAN TO ME
I CLOSE MY EYES
AND STILL HER FACE I SEE
SHE IS BUT ONE
HER KIND IS EVERYWHERE
CAN'T YOU SEE THERE'S NO WAY I SHOULD CARE

CAN YOU SEE IT IN THE NIGHT
CAN YOU FEEL THAT IT'S OUT THERE
IT'S THE ARCING OF A LIFE
AND IT'S HANGING IN THE AIR
THOUGH I TRY TO CLOSE MY EYES
AND PRETEND THAT I DON'T KNOW
IN MY HEART I JUST CAN'T LET IT GO

THERE HAS TO BE ANOTHER WAY FOR ME
A WAY THAT LEADS FROM THIS INSANITY
A WAY THAT LEADS FROM MY DESTRUCTION IN THIS WAY

CAN YOU SEE IT IN THE NIGHT
CAN YOU FEEL THAT IT'S OUT THERE
IT'S THE ARCING OF A LIFE
AND IT'S HANGING IN THE AIR
THOUGH I TRY TO CLOSE MY EYES
AND PRETEND THAT I DON'T KNOW
IN MY HEART
I JUST CAN'T LET IT GO

So maybe that lady prayed on it and the Lord told her no, but thank goodness for people like Cindy, who can't let it go and are doing something to help.


In the meantime, please do four things:

1. Donate blood, as often as possible. I’m spending tomorrow, my kids’ second day of school, donating for the first time since Nicolas’ birth, now that the eight-week wait is over. Labor Day is coming up and blood banks always run low around holidays, so please consider donating, too. (Thank you from the bottom of my heart if you already do, and you know who you are.) Blood donors saved Kendrie's life during her treatment --- please know that every pint in every location in the country makes a difference.

2. Consider signing up with the National Bone Marrow Registry.

3. Say a prayer that I get assigned to the cookie table next time, so all I have to do is shut up and smile.

4. Say a prayer for that woman. I’ve not often shared my religious beliefs on this site because I’m very private in that regard, but if she really prayed on it, and the Lord really told her NO, then I’m pretty sure she’s got some serious shit coming down the turnpike that he must need her to be ready for ---- you know, if he doesn’t want her all distracted with helping her fellow man or being a decent human being or any kind of worthless crap like that.