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debgeislerIt began with Dad.
In 1986, Dad started having trouble shaving. He couldn't raise his arms very well, and his hands lacked strength. Thinking it might be a pinched nerve or something, he went to his doctor. Then he went to a lot of other doctors. He kept going to doctors as the problem got worse. He had pain, cramps, other symptoms.
Eventually, they brought in a diagnosis of ALS: Lou Gehrig's disease. There wasn't a Web to look things up on, but there were libraries. Dad asked a lot of questions. He told Mom (they'd been divorced for a decade and a half). She was with him the day he called me in Boston, told me what the diagnosis had been, told me the prognosis: fatal, usually about 2 years after diagnosis.
The first thing he said when he called was, "Before I talk about this, know that it is almost never inherited." William C. Geisler had not always been the best father, certainly not to me. But before he told me he was dying, he wanted me to know I was probably safe. His kids mattered.
Mom had him move back in with her, and that's where he stayed until the end. Mom had no talent as a nurse, and she was always worried that she would do something wrong. She was freaking amazing. But she had to watch the man she'd fallen in love with in high school (and never, really, fell *out* of love with) die by inches. It was hideous.
Dad died on 9 October 1988. He was 54 years old.
When I passed his age (in fact, the day I had lived one day longer than Dad), something weirdly eased in me. That was three years ago.
* * *
So...to the presentish.
My sister Susan lived with Mom for the last three months or so of Mom's life, taking care of her, being comforting and loving, and helping ease Mom's fears. Su was amazing. My other siblings and I were deeply grateful knowing she was there, caring for Mom.
Mom died on 6 October last year. She was 80 years old. I miss her a lot.
We got together this March, the four of us sibs, to hang out at the house, talk about Mom's estate, selling the property, that sort of thing. But first, Su needed to tell us all something. She started talking about the physical problems she'd been having since shortly after Mom's death.
We could not breathe.
We three sat there, listening, and we stopped breathing.
We knew all of the symptoms.
We knew.
"It might be a brain tumor," Su said. "Or it might be ALS. It's all kind of narrowed down to those two things. Personally, I'm hoping for a brain tumor. How many people get to say that?"
Two weeks later, her neurologist confirmed: no brain tumor. He'd gotten a second set of opinions; the neurology group at the Cleveland Clinic agreed with the diagnosis.
My sister...is 54 years old. I'd been so pleased to have lived longer than my Dad that I forgot to be afraid for my siblings.
We'd all just forgotten to be afraid. It was 27 years since Dad died. It sucks large to find out that the ALS was FALS nearly three decades later.
It sucks to think, "I wish Mom were here so I could ask her..." and then "I'm so glad Mom isn't here, because the horror would be unimaginable." Finding out about Su was like having someone drag razor blades across your eyes. It would have been much, much worse for Mom.
* * *
And now comes the courage, the valor, the amazing strength of character of my sister.
Her former brother-in-law was dying of cancer. He had been in hospital since before Mom had passed, and then in hospice near the end. Su called him every day, visited several times a week (not easy for someone who cannot drive), acted as the emotional shield between him and so many other people, and never let him know about the ALS.
Because he needed her. She was his "sister."
She wouldn't use a cane until he passed. Never let him see how much pain she was in. She thought his pain was much worse, and she didn't want him to worry about her.
Bob Marley once said, “You never know how strong you are, until being strong is your only choice.” Su tells me that people remarked on her strength during her brother-in-law's decline, but she "isn't really strong." They don't know her, she says.
I cry bullshit.
She walked away from a bad relationship with nothing save the clothes on her back. For three months after that, she spent time easing my mother into a good end-game and a gentle passing. And fewer than three months after that, she started suspecting ALS...and said nothing to us. She didn't want to worry us unless she knew. Then it was time to be the rock for her brother-in-law.
And she doesn't think she is strong? Her strength is as brilliant as the sun.
Su's going through genetic testing in the hope that this is not FALS...just an astounding, 1 in 100,000,000 coincidence. Like Dad, she wants, hopes to reassure the rest of us.
She has signed up to go through lab testing for ALS patients in the desire that the studies might help someone else. "It's too late for me," she told me. I can't tell her to hold on to hope. I took Pandora's lesson to heart.
But I fucking want there to be hope.
There is rage in me. Rage that my sister, who finally had a chance to do something special for herself and find her own joy, has had that ripped from her. She is a kind, bright, talented, interesting, snarky, wonderful woman. And she deserves better.
The week before Mom died, Su bought them a cat. He was a full-bred Russian Blue who had the misfortune of having a tiny white tuft of hair on his chest and eyes that weren't quite green enough for his breeder.
At the advice of my Aunt Judie, she named him Mischa: a Russian name for a Russian cat.
This week, I took the cat away. He's somewhere in the house, getting over the freakiness of going 700 miles yesterday. Of being ripped from his human.
Su wanted him to have a good home. Her mobility issues are making it hard for her to care for him, and she knows it will get harder, worse. So she opted to cut the cord now, knowing how much it would hurt them both.
I drove away from Ohio and left her alone. With no companionship. Because she wanted it that way. Because I'm very fond of Mischa and will give him a good home. And because I love my sister very, very much.
She has more strength, more courage in the face of this crap disease, than I would have. Hell, more than most people would have.
In 1986, Dad started having trouble shaving. He couldn't raise his arms very well, and his hands lacked strength. Thinking it might be a pinched nerve or something, he went to his doctor. Then he went to a lot of other doctors. He kept going to doctors as the problem got worse. He had pain, cramps, other symptoms.
Eventually, they brought in a diagnosis of ALS: Lou Gehrig's disease. There wasn't a Web to look things up on, but there were libraries. Dad asked a lot of questions. He told Mom (they'd been divorced for a decade and a half). She was with him the day he called me in Boston, told me what the diagnosis had been, told me the prognosis: fatal, usually about 2 years after diagnosis.
The first thing he said when he called was, "Before I talk about this, know that it is almost never inherited." William C. Geisler had not always been the best father, certainly not to me. But before he told me he was dying, he wanted me to know I was probably safe. His kids mattered.
Mom had him move back in with her, and that's where he stayed until the end. Mom had no talent as a nurse, and she was always worried that she would do something wrong. She was freaking amazing. But she had to watch the man she'd fallen in love with in high school (and never, really, fell *out* of love with) die by inches. It was hideous.
Dad died on 9 October 1988. He was 54 years old.
When I passed his age (in fact, the day I had lived one day longer than Dad), something weirdly eased in me. That was three years ago.
* * *
So...to the presentish.
My sister Susan lived with Mom for the last three months or so of Mom's life, taking care of her, being comforting and loving, and helping ease Mom's fears. Su was amazing. My other siblings and I were deeply grateful knowing she was there, caring for Mom.
Mom died on 6 October last year. She was 80 years old. I miss her a lot.
We got together this March, the four of us sibs, to hang out at the house, talk about Mom's estate, selling the property, that sort of thing. But first, Su needed to tell us all something. She started talking about the physical problems she'd been having since shortly after Mom's death.
We could not breathe.
We three sat there, listening, and we stopped breathing.
We knew all of the symptoms.
We knew.
"It might be a brain tumor," Su said. "Or it might be ALS. It's all kind of narrowed down to those two things. Personally, I'm hoping for a brain tumor. How many people get to say that?"
Two weeks later, her neurologist confirmed: no brain tumor. He'd gotten a second set of opinions; the neurology group at the Cleveland Clinic agreed with the diagnosis.
My sister...is 54 years old. I'd been so pleased to have lived longer than my Dad that I forgot to be afraid for my siblings.
We'd all just forgotten to be afraid. It was 27 years since Dad died. It sucks large to find out that the ALS was FALS nearly three decades later.
It sucks to think, "I wish Mom were here so I could ask her..." and then "I'm so glad Mom isn't here, because the horror would be unimaginable." Finding out about Su was like having someone drag razor blades across your eyes. It would have been much, much worse for Mom.
* * *
And now comes the courage, the valor, the amazing strength of character of my sister.
Her former brother-in-law was dying of cancer. He had been in hospital since before Mom had passed, and then in hospice near the end. Su called him every day, visited several times a week (not easy for someone who cannot drive), acted as the emotional shield between him and so many other people, and never let him know about the ALS.
Because he needed her. She was his "sister."
She wouldn't use a cane until he passed. Never let him see how much pain she was in. She thought his pain was much worse, and she didn't want him to worry about her.
Bob Marley once said, “You never know how strong you are, until being strong is your only choice.” Su tells me that people remarked on her strength during her brother-in-law's decline, but she "isn't really strong." They don't know her, she says.
I cry bullshit.
She walked away from a bad relationship with nothing save the clothes on her back. For three months after that, she spent time easing my mother into a good end-game and a gentle passing. And fewer than three months after that, she started suspecting ALS...and said nothing to us. She didn't want to worry us unless she knew. Then it was time to be the rock for her brother-in-law.
And she doesn't think she is strong? Her strength is as brilliant as the sun.
Su's going through genetic testing in the hope that this is not FALS...just an astounding, 1 in 100,000,000 coincidence. Like Dad, she wants, hopes to reassure the rest of us.
She has signed up to go through lab testing for ALS patients in the desire that the studies might help someone else. "It's too late for me," she told me. I can't tell her to hold on to hope. I took Pandora's lesson to heart.
But I fucking want there to be hope.
There is rage in me. Rage that my sister, who finally had a chance to do something special for herself and find her own joy, has had that ripped from her. She is a kind, bright, talented, interesting, snarky, wonderful woman. And she deserves better.
The week before Mom died, Su bought them a cat. He was a full-bred Russian Blue who had the misfortune of having a tiny white tuft of hair on his chest and eyes that weren't quite green enough for his breeder.
At the advice of my Aunt Judie, she named him Mischa: a Russian name for a Russian cat.
This week, I took the cat away. He's somewhere in the house, getting over the freakiness of going 700 miles yesterday. Of being ripped from his human.
Su wanted him to have a good home. Her mobility issues are making it hard for her to care for him, and she knows it will get harder, worse. So she opted to cut the cord now, knowing how much it would hurt them both.
I drove away from Ohio and left her alone. With no companionship. Because she wanted it that way. Because I'm very fond of Mischa and will give him a good home. And because I love my sister very, very much.
She has more strength, more courage in the face of this crap disease, than I would have. Hell, more than most people would have.