Tuesday, February 26, 2008

What is the big deal with brain donation?

I'm at a year. One year. What the heck happened to that year?

One year ago I was putting together a team. This team was so important to me. It would make the difference in the value of a human life.

One year.

And now that time has past. It passed so fast that I can hardly remember many of the days in between. Like the pictures of her above, the top is her 18th birthday. My daughter is now 18. It feels like a paradox. The people in the photos below are people that are still alive and knew her well. She mattered to them. She mattered to me.

The team had doctors, nurses, family, and friends. It had transfer options, hospital and hearse involvement. Why?

Because I knew my mom was dying. I couldn't let her go without somehow making her life matter. Somehow making what we'd been through have a purpose!

March 1st is coming up. That's the day it all went down. It went down and I began a climb toward purpose. But was it hers or mine?

With Mom's schizophrenia acting as a character in our own daytime drama, I couldn't let it win as if the mental illness was the victor. So I planned and plotted. I prepared and set in place something I felt would make a difference.

Mom died. I dealt with it in the best way possible. And then I didn't.

I prepared. I planned. I had it in my mind that I could do this thing. i could donate her brain because it would benefit mankind. It would make some other mother and daughter have what I didn't have, relationship.

Then at the last minute, at 11:45p.m. on March 1st, I panicked. I had to ask over and over if she'd really passed on. I had to have the nurse check several times. I stood there. Me. I had my hand on Mom's chest when she took her last breath. I knew she was gone! But I didn't want to believe it.

It would be the ultimate moment that I had to realize I could not ever connect in this world with her on a human level. I never could and I never would. The mental illness would forever be the wall between us. It meant I had to realize that someone would actually perform the procedure.

I was terrified that I couldn't make that decision. Terrified!

I didn't want to cause her anymore pain. I didn't want to make a mistake. I didn't want to be heartless.

Everything I'd been doing for almost 7 years was to provide and protect my mom. Suddenly I was allowing someone to really invade her.

Thank God for the hospice nurse.

Her gentle voice, reassurance that Mom had passed, and honestly-her eyes looking into mine told me I could do what needed to be done.

I gave the word.

What was it? Some amazing testament? Some profound utterance?

No. It was simply, "Okay."

"Okay?" She asked.

"Okay, do it. Do what we planned so we can help someone else." My sense of resolve never faltered, just my sense of insecurity over causing her pain. I wasn't fully accepting of her death in the short time since her last breath. Why did things have to move so slowly and then suddenly so swiftly?

So. One year later. How do I feel? I feel like it was an important step. A good step. A contribution to someone else's future.

I hope to see the end result, but I probably won't in my lifetime. The study for schizophrenia isn't an overnight success just like most everything else isn't. All the work and all the preparation for the big unveiling of the "success" is done behind the scenes over years uncounted.

Would I do it again?


How do I know?

Because I'm a brain donor too. And when I pass, I hope my husband and children will have the courage to continue what I started. It's not easy dealing with the emotions of donating organs from someone you love. It's not easy because the picture is in your head no matter what anyone else says.

It's still the right thing to do. The picture gets better. In fact, as time passes, you will feel like you made the right decision to help others.

My advice is this: Set up in advance what needs to be done so that when the time comes, you can just put the wheels in motion. Too much to think through will cause failure. That is a regret I know I couldn't live with. Could you?

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