How It Started and How It's Going: Our Journey

Caution: Strong Language

Trigger Alert: Brief Discussion of Suicide

Photo by Octavio Fossatti on Unsplash

In the Beginning: How It Started

Mr. J’s diagnosis came after a series of odd events and unexplainable behaviors.  The first time I took him to the emergency room and insisted something was wrong, they discharged him about eight hours later with a shoulder shrug.  Six weeks later, we were back in the ER, where they took things a bit more seriously.  Especially after he couldn’t figure out how to put his pants back on. . . Three days later, we had exhausted every test anyone on staff could think of, except a few they didn’t perform at the actual hospital.  So we were discharged from the hospital with instructions on how to make an appointment for the outstanding tests.  The earliest appointment was five weeks out.  But that was just for the procedure.  Our meeting with the Doctor to discuss the results was still another month after that.

Our Doctor’s appointment was on a Friday.  With no actual expectation of finding anything, I opened Mr. J’s “My Chart” on Thursday afternoon.  I was surprised to see notes.  I read the words.  I Googled the words because I didn’t recognize them in the order they were listed on the page.  Google delivered the bad news.  Brain degeneration. No treatment.  No cure.  Always fatal.  In other words, no hope.  Just a long, slow, march towards death.  Also, personality changes.  Violence (sometimes). Over-eating (sometimes). ALS (sometimes). Apathy. Loss of language. A death knell.  It took me 18 months to (mostly) right the ship in my own emotion ocean. Only now are we able to laugh again with regularity, even knowing what is to come.  Because it’s not here yet!

Should We Put That In Your Obit: How It’s Going

For reasons I can’t now reconstruct, Mr. J and I were discussing his regrets in life.  “I regret getting a fucked up brain disease,” he said.  “Well,” I responded, “To avoid the fucked up brain disease, you would either have to have already died, or never been born.  I don’t find either of those scenarios satisfactory.”  Mr. J went on without missing a beat.  “I also regret not playing more soccer.  If I’d know I was going to get a degenerative brain disease, I might have gone all in on concussions and other head injuries by playing soccer.”  “Really?” I ask.  “Yeah,” Mr. J replied.  “I always thought I could have had an NFL career as a kicker.”  This stuns me.  I have known and loved Mr. J for 25 years.  I have never heard him discuss a dream of being in the NFL.  (Although, at 6 foot 5, he might have caused quite a stir!)  “Should we put that in your obituary?” I ask.  “Put what in my obituary?” he questions me.  “Put it that you ‘coulda been a contenda.’”  (NOTE: originally from “On the Waterfront,” revived by “Raging Bull,” you may rest assured my imitation was . . . ummmmm. . . less than stellar, but still earned me a “Is that from ‘Raging Bull’?” from Mr. J.)  We laugh.  “That probably shouldn’t make the obituary,” he concludes.  “Then you better help me write it.  Because if I write it after you die. . . “  I just let that hang in the air.  “Are you threatening me with what you will put in my obituary if I don’t help write it?”  “I’m not threateing you,” I say, “It’s just that grief is a strange and funny thing.  Who knows what I might write.”   Then, after a few minutes of companionable silence, I add, “I really don’t want to write that alone, babe.”  “Okay,” he says and puts his hand on top of mine.

Just Make Sure You Find Someone

Mr. J and I were talking.  “I’m sorry, baby,” he said.  “I didn’t mean to get a fucked up brain disease.”  “I’m sorry, too,” I said.  “I thought we would grow old together.  Sit on a porch, fat and happy, looking at Lake Superior, or traveling to Reno, or I don’t know. . . “  “Just make sure,” he said, “after I die, you make sure you find someone.”  “The trick,” I say, “Is finding someone who doesn’t have a degenerative brain disease inside them.  I didn’t consider that as a screening tool back when we decided this was a ‘forever’ relationship.  Not that it would have mattered.  They couldn’t test for this.”  We sit in silence.  Then, Mr. J said “You’re just going to have to do better next time,” acting all serious, even though I knew as soon as the words were out of his mouth that he was kidding me.

Considering Alternatives

“I couldn’t sleep last night, because I’ve been thinking about dying,” Mr. J said.  There was a pause, as Mr. J and I both thought about him dying.  Specifically, I was thinking of the inevitable void I would have to face with him gone.  Mr. J, however, was being far more concrete.  “I’ve been thinking about hypothermia.  What do you think?” I had not expected this.  I considered it for a moment.  “Well,” I said, cautiously, “if you pick hypothermia, you can at least change your mind.  You can always walk back inside.  If you jump over a bridge. . . “  Jumping over a bridge is something he has proposed before.  We live next to a fairly high bridge, but recently, they installed super tall fencing on the sides.  There is another bridge, about a mile away, that does not have the same super high barrier.  “Yeah,” Mr. J said.  “I read about some guy who actually survived jumping off the Golden Gate Bridge, and as soon as he jumped, he regretted it.”  “I read that, too!” I said.

The Club Nobody Wants to Join

So here we are.  Members of the club nobody wants to join.  With Mr. J considering various ways he might decide to end things himself.  Me trying to be supportive of whatever he chooses.  And trying to get him to help me write his obituary.  Because I want to get it right.  I want to know it is what he wants.