Monday, March 16, 2015

Frightening, Horrible and One of the Worst Things Ever

It's been a terrible week.

On Tuesday, a friend of mine told me about the freak thing that happened to her recently while riding a commuter rail train.

She was sitting there reading, as usual, when suddenly she felt nauseous.  She kept feeling worse and worse and really wanted to get off the train but couldn't because the next stop was still miles away.  She thought about asking for help but soon realized she couldn't speak.  Finally, at her first opportunity, she got off the train with the hope that the evening air would help her feel better.  It didn't.  Instead her arm started tingling and her jaw went numb.  After more than twenty minutes of just sitting and not being able to speak, her symptoms began to fade.  She took the next train to her regular stop and called a co-worker (she lives alone) who picked her up and took her to the emergency room.

After many hours and multiple tests, the emergency room doctor told her she'd had a small stroke.  This was shocking because my friend is 49 and has not had any health problems.  The doctor also told her that if she'd been asleep when the stroke happened she never would have woken up.

After hearing this story, all I could think about was never wanting to sleep again.


On Wednesday, Gabbie told me she just learned that one of her very best high school friends has stage four lung cancer.  The cancer has metastasized and spread into her bones and blood.  No one knows how much longer she'll live.  A few months, at most.

This friend grew up in a nice neighborhood and had a loving, supportive family.  Life was good for her, until Junior year of high school, when a long series of bad things began to happen.  First, her father died from a heart attack.  Then, several years later, her oldest son was born with severe autism.  She was told he'd never be able to care for himself.  A few years after that she had her second son.  He was healthy but the strain of the children was too much for her husband, so he left.  She raised her two boys alone for about five years, then met a new man.  Everything was great between them until she got pregnant.  The boyfriend told her he did not want the baby nor did he want to get married.  Already overwhelmed by having to care for two children on her own, she decided to have an abortion.  She was raised Catholic so it was a very difficult and painful decision.  Shortly after the abortion, the boyfriend left her.

A few more years passed, then she learned that her oldest, then about 10 or 11, had leukemia. Fortunately he recovered but it took years and it was a long, gut-wrenching experience. During that time, her mother was her primary support.  She withdrew from all her friends and didn't date.

So far as Gabbie knows, she hasn't been in a relationship in more than ten years.  Her boys are now 20 and 18.  They are her life's work.  Gabbie will be seeing this friend soon, so I'll hear how those boys are doing, but all I can think about it is how this poor woman's life has been one trauma after another.  It's just so sad.  And what does she have to look forward to?  Dying at 48.


On Thursday, the news came that we most feared.  My 49yo brother-in-law (Gabbie's sister's husband) has Amyotrophic Lateral Sclerosis.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

If you've never known someone with ALS, consider yourself very fortunate.  Gabbie and I have known two people who died from it.  Both were diagnosed in their late 40s, which is when the disease frequently reveals itself.

One of the people we knew was a neighbor.  When we first learned he had ALS, he walked with a limp and his speech has slightly slurred.  But as the months wore on, walking became much more difficult and he became increasingly difficult to understand.  We never saw him in the later stages of the disease.  All we knew was that he wasn't doing well.  I'm not sure exactly, but I believe he died less than three years after diagnosis.

The second person we've known with ALS was the mother of one of our daughter's friends.  She was a nice, happy, outgoing woman.  She lived longer than our neighbor did...maybe as many as five years.  As the disease progressed, seeing her was very difficult.  I ran into her at the grocery store a few times and it was extremely awkward.  She could walk relatively well but her speech was almost unintelligible.  The last time I saw her, long lines of saliva were dripping from her mouth to the floor.

Gabbie's father died in our house at 62.  He had cancer that began in a gland in his face.  Watching him die was a horrible, horrible experience.  But as bad as that was, my brother-in-law's gradual decline will be worse.  His mind will remain completely untouched but his muscles will eventually prevent him from doing anything, including communicate.  Ultimately he'll die by suffocation.  It's a slow, horrific way to go.  You witness your own death as your muscles betray you.

Stephen Hawking has ALS and it's really a miracle that he's alive at 73.  The 5 year survival rate is only 20%.

It's too soon to know how fast my brother-in-law's ALS will progress, but chances are, he'll be lucky to see his now-12yo daughter graduate from high school.  Even if he does make it that long, he'll be a twisted, drooling lump in a wheelchair at the ceremony.

I hope to be wrong, but I doubt he'll see his 11yo son graduate.

It's so fucking depressing.

I haven't seen him since his diagnosis.  When I do, I'll probably be at a total loss for words.  What do you say to someone who's just been given a 5-year torture-then-death sentence?

Why am I sharing these awful stories?

Two reasons -

First, they're a reminder of what I tell my kids all the time, especially as it pertains to their animosity toward their mother: "You should never be mean to someone close to you.  You never know what might happen.  Life is unpredictable. Never say anything you might later regret because, sometimes, you can't take the words back."

Second, for all those people who struggle with the relationships they're in, whether you feel like you're trapped in the closet as a married man, or trapped in the closet with a married man - life is short.  We are mortal.  We are fragile.  Tragedy, I'm sorry to say, is inescapable.  Be kind to others but also be honest and authentic. Live each day as a gift, because that's what it is.