These little lights

“This little light of mine, I’m gonna let it shine.” – from an old African-American spiritual

On Saturday night, Greg Martin’s extended CLL family lit candles in his memory. The idea came from a member of CLL Forum after news of Greg's death had been posted there; it was a grassroots gesture of the heart.

I met Greg at the forum, which has only been around since February. Greg was one of the first and most frequent posters, and he felt at home there. He was able to speak honestly and openly about his anger and frustration as refractory CLL and severe ITP eroded his life. He needed constant platelet infusions and, even then, had platelets in the single digits. He also had severe fatigue. He once railed loudly against CLL being called an “old man’s disease” because, at 47, he already felt like an old man. It was the little things that were often the hardest: One day he wrote, angry that his koi pond had to be torn out because he could no longer take care of it.

Greg also wrote with great strength and wisdom, telling us not to be afraid of the prospect of death, or of his decision to go into hospice. As much as we were all surprised at his passing -- which was, thankfully, gentle -- he had done much to prepare us for it.

Greg had devoted his last energies to preparing his family for that prospect, also. He had been a Marine -- he posted a photo of himself in uniform back in the 1970s -- and in his final months he soldiered on with one purpose in mind: to continue working so that his wife could get a nursing degree, so that she could support herself and their sons. Greg told us he would fall asleep at his desk, was so fatigued that he was afraid to drive to work. But he kept putting one foot in front of the other for his family.

Greg also had his hopes, one of which was to take his family to Disney World. A few weeks ago he managed to do it, no doubt creating some wonderful memories that his sons and wife will always cherish.

Sometimes Greg would discuss the details of his disease and the limited options for treating it. He once told me that not everyone with CLL is rich, not everyone can just take off from work and go see all the best specialists. His story is a reminder that there are more important things to some CLL patients than their own conditions, and that for many of us, circumstances can limit our choices.

Greg’s spelling wasn’t great, but he could speak with great eloquence. He was angry sometimes, but he was seldom fearful. Bravely, he prepared us for what lay ahead:

”There is another life after this one this I know with all my heart,” he wrote. “I'll be back after this and may be then will meet again. I've been here before. I found my soul mate this time with Polly. I hope in my next life I'll find her again. When you believe like I do, death is a natural thing and not to be feared. To me there is no heaven or hell, but there is a new beginning, a new journey to go on. In away it's kind of exciting, I only wish I could bring some of my knowledge with me from this life, may-be we do. Genetic knowledge, some animals have it, they call it instinct. Our children are getting smarter so may-be we do bring some back with us. I wish I knew.”

Yet, even as he prepared for the next journey, Greg, like all of us, did not want to be done with this one.

His last post, the day before he died, was under the topic “1001 Things To Do Before You Die”:

“See my grand kids,” he wrote, “watch my sons grow old, see how it feels to be 100, see next christmas.”

As Greg said many times, I will say now: I am so angry at this disease. It is the robber of dreams, and of good men and women.