debgeisler: (headshot2)
[personal profile] debgeisler
It 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.

* * * 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 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.

Oh Deb

on 2015-07-22 06:32 pm (UTC)
Posted by [identity profile]
hugs and love. That's all I have from so far away. Mischa could not have any better 'moms' in this world or the next.

Re: Oh Deb

on 2015-07-22 07:09 pm (UTC)
Posted by [identity profile]
Thank you, Paula. And hugs right back at you.

on 2015-07-22 06:39 pm (UTC)
Posted by [identity profile]
I don't even know what to say, other than that I'm sitting here and can't see the keyboard after reading this.

Hugs and strength to you and yours.

on 2015-07-22 07:10 pm (UTC)
Posted by [identity profile]
I don't think there is really much to say, Dave. It just kept gnawing, and I needed to get it out. Thank you for your kind words.

on 2015-07-22 07:33 pm (UTC)
Posted by [identity profile]
No, there really isn't. How does that go?

Sometimes there isn't anything to say, so I wanted to say it.

on 2015-07-22 06:54 pm (UTC)
Posted by [identity profile]
Thank you for sharing the stories.

on 2015-07-22 07:10 pm (UTC)
Posted by [identity profile]
Yes...sometimes, that's what we need to do. Exactly that.

on 2015-07-22 07:04 pm (UTC)
Posted by [identity profile]
I am so sorry to hear this.

Starting this fall, if she lives in the Cleveland area and I can ever pass things between the two of you, just let me know. I'll be driving up in mid October for my 40th high school reunion and I do have a station wagon.

on 2015-07-22 07:08 pm (UTC)
Posted by [identity profile]
Thank you very much, Laurie. I'm going back to Ohio regularly, too. One of these days I may even putter your way for a day and take you and Jim to dinner. :-)

Su doesn't need stuff at this point. She's a pretty minimalist kind of gal. But I very much appreciate your kind offer.

on 2015-07-22 07:09 pm (UTC)
ckd: two white candles on a dark background (candles)
Posted by [personal profile] ckd
I don't have any better words than "I read the whole thing".

on 2015-07-22 07:13 pm (UTC)
Posted by [identity profile]
Thank you. Sometimes, the whole "bearing witness" part of life is what we all need.

on 2015-07-22 07:15 pm (UTC)
Posted by [identity profile]
Oh Deb. Many hugs to you and your family.

on 2015-07-22 07:35 pm (UTC)
Posted by [identity profile]
Thank you very much. :-) We appreciate it.

on 2015-07-22 07:39 pm (UTC)
Posted by [identity profile]
I'm so, so sorry. This is beautifully written but I'm sorry you had to write it.

I hope you and Mischa bring one another comfort.

I hope what's left of the LJ community is helpful to you right now.

on 2015-07-22 07:53 pm (UTC)
Posted by [identity profile]
Thank you, Ruth. :-) I posted it here because of the kind people like you, and because I needed to get it out.

Mischa and I will probably bring each other comfort if he stops hiding. But I'll assume that will take a bit longer. (We have too many spare beds and other places for him to hide!)

on 2015-07-22 08:02 pm (UTC)
Posted by [identity profile]
There are no adequate words at news like this. Please know though that you, your sister and your family are in my thoughts and prayers.

on 2015-07-22 08:34 pm (UTC)
Posted by [identity profile]
Thank you, Eve. :-)

on 2015-07-22 08:46 pm (UTC)
Posted by [identity profile]
Sometimes bearing witness is grace itself -- which you have done beautifully. I grieve for you, her, and the rest of your family. And I wish you peace; joy in the smallest of blessings; and love....always love.

on 2015-07-23 12:03 am (UTC)
Posted by [identity profile]
Thank you for your kindness - and yes, bearing witness is all I can do right now. Later, there will, I hope, be more.

on 2015-07-22 09:14 pm (UTC)
Posted by [identity profile]
So sorry that you and your family are having to go through all of this again. As you know, I've got a sibling that has been going through medical issues and it just sucks to feel so helpless and have that issue in the back of your mind all the time. I'm sure Su is not the only strong one here and I wish you and all of your siblings more strength in the days to come. Much love from here.

on 2015-07-23 12:04 am (UTC)
Posted by [identity profile]
Thank you, Janice. All wishes of grace and strength are happily accepted. Best to you, Stephen, and your brother, of course.

on 2015-07-22 09:25 pm (UTC)
Posted by [identity profile]
Just *hugs*

on 2015-07-23 12:05 am (UTC)
Posted by [identity profile]
Thank you. :-)

on 2015-07-22 09:43 pm (UTC)
Posted by [identity profile]
Deb, reading this story made me cry. You have a wonderful, strong supportive family. I'm glad that I got to meet your mom at N4. Su is especially strong, and you can tell her your friends agree with you.

She is not completely alone, since I know that you will stay in close contact and be there with her if you ever need to. And it should be comforting to her that you and Mike will be giving Mischa a great home.



on 2015-07-23 12:05 am (UTC)
Posted by [identity profile]
Thank you, Sharon. I appreciate your kind wishes. :-)

on 2015-07-22 09:46 pm (UTC)
Posted by [identity profile]
I never know whether saying something is welcome or not, but {hugs} to you and your sister.

on 2015-07-23 12:06 am (UTC)
Posted by [identity profile]
How could kindness be unwelcome? Thank you very much.

on 2015-07-22 11:11 pm (UTC)
ext_12542: My default bat icon (Default)
Posted by [identity profile]
I am so very sorry that this has happened to your family, your sister, and you. You have my love and support.

on 2015-07-23 12:08 am (UTC)
Posted by [identity profile]
Thank you, Sheila. Your kindness is very much welcome. :-) And the dogs', of course.

on 2015-07-23 12:43 am (UTC)
Posted by [identity profile]
Your sister sounds amazing.

Sending hugs.

on 2015-07-23 12:54 am (UTC)
Posted by [identity profile]
She is. :-) Thank you.

on 2015-07-23 01:57 am (UTC)
Posted by [identity profile]
Your family is in my thoughts and prayers.

on 2015-07-23 02:02 am (UTC)
Posted by [identity profile]
Thank you, Michael. All good thoughts help. :-)

on 2015-07-23 02:10 am (UTC)
Posted by [identity profile]
So very sorry for your pain. I hope you and Mischa can bring comfort to each other. I'm sure Su is happier knowing that he has a good home.

Also, I do understand about passing the age. My maternal grandmother died young. I was increasingly terrified as my mother approached that age, and have been grateful for every day since. (Still hoping for many more, G-d willing.)
Edited on 2015-07-23 02:13 am (UTC)

on 2015-07-23 02:27 am (UTC)
Posted by [identity profile]
Thank you for your kind words. Mischa's gone from hiding under a bed to stalking around,mbeing insistent about being petted, and investigating everything. He's even started to make up to Mike, who he knew a bit. Not bad for 24 hours. He's head-butted my hand several times...I think he believes I'm hiding Su somewhere around here.

And yes, thank you for understanding the age thing. We remember benchmarks...sometimes, we fear them. Hope you have your Mom for many years to come, and that she is feisty for them all.

(BTW, my brother's selling his Carrera and buying a dedicated track race car. :-) Knew you'd grin.)

on 2015-07-23 03:27 am (UTC)
Posted by [identity profile]
Sounds like he's doing wonderfully! Very glad the transition is going well. I'm sure it helps that he already knows you.

Thank you very much for the good wishes. I do greatly hope so.

And, yes, that did get a big smile. :-) You'll be amused to know that Harry told me tonight he wants to own a McLaren someday. (Not by name - he saw a picture.) I told him I'll be very happy for him if he can manage it!

on 2015-07-23 03:46 am (UTC)
ext_73228: Headshot of Geri Sullivan, cropped from Ultraman Hugo pix (4 tulips)
Posted by [identity profile]
The situation is everything you say, and the love shines through and through. Remember to continue taking care of yourself as you do everything you can to help Su through all that is to come. She's not the only member of your family whose strength is as brilliant as the sun, each in your own ways.

Let's head out to Crane Beach when we can, and on a whale watch, too. Such outings won't erase the rage, of course, but I hope they'll bring a few moments of quiet comfort and wonder to the journey.

I look forward to meeting Mischa.

on 2015-07-23 01:16 pm (UTC)
Posted by [identity profile]
Thank you, Geri. I wish it were as easy to give Su something fun to do, but her bucket list is not long enough.

Here's hoping the rest of your travels are safe and easy. :-) And whale watch, definitely. I have 5 tickets!

on 2015-07-23 11:53 am (UTC)
Posted by [identity profile]
Thank you for sharing this. My son's best friend's father died of ALS last year.. it was truly devastating. I wish I could do more than just send my love and positive thoughts to you.
I will let both my son and his friend read this in the morning. (they are both 19)

on 2015-07-23 01:18 pm (UTC)
Posted by [identity profile]
If it helps, even in a small way, please do share it. Thank you for your good wishes, and my best to your son and his friend.


debgeisler: (Default)

April 2017

23456 78

Style Credit

Expand Cut Tags

No cut tags
Page generated Sep. 25th, 2017 06:55 pm
Powered by Dreamwidth Studios