Within days of our return, he would be hospitalized and would remain that way through July.
I used to blame his insistence on taking the Charleston trip for his death, since he put off radiation treatment so that we could go. But, you know what? As far as options go, all of Mike's options sucked. And at least we got 4 days of warm sunshine, delicious food, horse-drawn carriage rides... and we even signed up for a time share while we were there (I should have known he wasn't quite in his right mind).
I rarely revisit the dirty details of the hell that was Oct 2005 - July 2006. I recorded some of it in this blog. I also wrote a book-length manuscript which some publishers were interested in, provided I was willing to go back and make some changes. I wasn't. Once it was written, I couldn't even bring myself to open the document. But today, for some reason - curiosity, i guess - I went back to the part of the manuscript about that Charleston trip.
Sure enough, I had forgotten most of it. The brain is a brilliant creature. If you leave a memory untouched - if you choose to not access it - it's like it was never there, like it never even happened.
But, I'm starting to wonder if, instead of seeing this trip as a harbinger of the dreadful things to come, I should think of it as Mike exercising his right to live - and die - the way he wanted.
Let's face it: If Mike had survived this, he would never be the same. Not only would he not be able to do the things he loved (improv, design, cooking), he would never be able to live unassisted. He would be blind and would need constant medical care. He would require massive amounts of medication: massive steroids, testosterone supplements, as well as synthetic forms of EVERY hormone and chemical that is governed by the pituitary gland. He would suffer from electrolyte imbalances, would continue to have lapses in short-term memory, and would likely need to live in a nursing home.
I know I've written this dozens of times over the last 8 years, but, I need to remind myself: Mike would have wanted to die rather than live through that - and he would have wanted to die rather than putting all his friends and loved ones through that.
A few days ago, I was listening to a rebroadcast of Terri Gross' interview with Sherwin Nuland, the author of "How we Die." Nuland is one of the fathers of the hospice and palliative care movement. He confessed the guilt he had about urging his cancer-stricken brother to try an excruciating new cancer treatment - one that was unlikely to work - but at least would give his brother a "chance". His brother died anyway, and Nuland regrets that by his own urging, his brother spent his last months going through this awful treatment, instead of just being with his family and dying in peace. Through this experience, he gained clarity and perspective on what it means to die with dignity. Nuland writes:
One of the points I try to make in this book - and I make it a number of
times and a number of different ways - is that what gives dignity to
death is the dignity of the life that preceded it. When we have brought
about a situation where we are loved and we love, where our lives have
been lives - not necessarily of great accomplishment, but of a sense of
having given something to others - whether those others are as close to
us as our children or parents or whether those others are as far away as
a radio or a television audience. When we have done that, our deaths
have dignity. Our deaths become a part of our lives in the sense that
with our deaths we give something to those who are left behind as we
have given our lives to them.So, in addition to all the joy that Mike brought to people through his friendship, his improv talents, and his infectious laughter, in the spirit of Nuland's quote, the dignity of Mike's life was also enhanced but the way he chose to live in those last months. By insisting on taking this trip, Mike may have hastened his death, but that, in and of itself, might have been the best possible outcome.
*******
March 8, 2006. Mike and I left for Charleston.
Bax was in good hands with Deke and Aunt Victoria and Mike and I were
both excited to simply get away. Mike
had planned a relaxing trip with reservations at the Andrew Pinckney Inn – a BnB
just off of the market in Charleston.
When we got to
the airport, Mike realized he had forgotten one of his medications. His Desmopressin (DDAVP) nasal spray. This was the medicine that he used to
supplement a hormone that his body didn’t make anymore since the surgery. It is the hormone that our bodies release
that tells us not to urinate out all
the fluids in our body. Without this
medication, Mike would pee and pee and pee and then become dehydrated. His sodium would elevate and he would get tired
and slightly whacky. This is the
condition that we would battle for months, Diabetes Insipidus.
He convinced me
that it wasn’t a big deal. He had
refills on his prescription and we would simply get it filled once we arrived
in Charleston.
Once on the
plane, Mike had to pee. Not like you and
I have to go pee – but like a desperate need to go pee – n.o.w. He got up while the “fasten seat belt” light
was on, received a reprimand from a flight attendant, and proceeded to the
bathroom anyway – twice.
That afternoon,
we checked into our room and immediately went in search of a pharmacy. We walked the streets of Charleston and Mike had to stop several times
to pee – behind a bush and in a parking lot.
He was so embarrassed, but there was nothing he could do. He needed to get his medicine. We got to the pharmacy, got his refill
prescription for DDAVP transferred and waited for it to be filled.
Once we got it,
I was relieved. He took two puffs of the
magic pee-inhibiting nasal spray and we headed out – ready to actually start
our vacation. About ten minutes into our
walk back to the Bed and Breakfast, Mike realized his palm pilot was
missing. He had been playing some games
on it while waiting for the prescription to be filled, but now it was gone. We retraced our steps to the pharmacy and
found Mike’s pile of maps – which he had also forgotten – but no palm
pilot. It seems that someone took it.
In typical Mike
fashion, he sighed a quick sigh, shrugged, and said, “No big deal. I have everything saved on my computer at
work. I’ll just have to get a new
palm. That one was outdated anyway.”
I felt so
angry. Not at Mike for forgetting the
medicine or the palm pilot. But at Mike
for not acknowledging how weird this all was – how unlike himself he was. We walked in silence. Finally I stopped him, “Smoosher, do you feel
like yourself? Cause you certainly don’t
seem like it.”
He looked hurt.
“No,” I
backpedaled, “I just mean… you seem distracted or absent-minded. Less able to remember things than your usual
self.”
“Hmm,” he said
quietly, pausing to think for a moment, “Maybe you’re right.”
And that was
it. End of discussion.
The rest of our
vacation in Charleston
was a combination of smooshiness and total dread. Mike was smooshy. I, in contrast, was watching my world fall
apart before me.
Mike slept about
fourteen hours a night and napped for another 2 or 3 in the afternoons. In the night, when he got up to use the
bathroom, each time he would struggle to open the door to the hallway.
“Smoosher, what
are you doing?” I would ask.
“I’m trying to
go to the bathroom, but it’s all locked up,” he said.
“That’s cause
that’s the door to the hallway.”
“Oooh,” he would
say in a jovial exaggerated tone, “Doh!
Silly Smoosher!”
Our first night
there, we went to the ATM to take out money.
Our account was overdrawn. Not by
a little – but by several thousand. The
entire trip we charged everything and agreed to figure out what was wrong with
our finances when we returned to Philly. Instead of transferring money from savings to checking, as planned, Mike had done the opposite - leaving us in the red.
Our second day
there, while poking around in the market, we found ourselves roped in to an
upscale time-share pitch. In exchange
for an hour and a half of our time, we would receive free tickets to two
attractions (that we planned on seeing anyway) along with a four-day
three-night vacation package.
“We don’t have
anything planned…” Mike suggested.
“Maybe we should do it.”
Why not?
One hour later
we were inside the sales office of “Bluegreen Resorts” at the Lodge Valley Inn
in Charleston. After touring the Inn,
we sat down with Valerie, our charming sales agent, and talked about how much
we loved vacationing.
Valerie used a
questionnaire as a guide in our Q&A:
- Describe your ideal vacation.
- Looking ahead to the next year, how many trips do you think you’ll take?
- What kinds of trips do you see yourself doing?
- What about the next five years?
- What was your favorite vacation destination thus far?
While the
questionnaire was designed as a sales pitch, it provided Mike and me a rare
opportunity to reflect on all of our past travel experiences. Are there were many: Kawai, Honolulu, Disney World, Shenandoah
Valley, Martha’s Vineyard, Lake Placid, The Poconos, Islands of Adventure, San
Francisco, Miami, Lake Tahoe, Monterey Bay, The Florida Keys, New Hampshire,
Cape May, Bethany Beach, Maine…
After three
hours, Mike and I agreed to discuss the time-share package over lunch and
return with our verdict. We returned to
Valerie and told her that we wouldn’t be comfortable buying in completely, but
would love a trial package (about $1000).
As we filled out the paperwork, Mike began to fall asleep at the desk –
repeatedly.
“Mike, are you
ok?” Valerie asked.
“I’m fine,” he
replied, not realizing he had been nodding off.
Valerie then
brought in Justin, the young man in charge of finalizing sales. We gave handsome young Justin our IDs, signed
the forms, and shook hands. Mike and I
left the bluegreen sales office that afternoon smooshy and excited – smooshy
from all the reminiscing about our wonderful lives together and excited about
the future.
Ten days later,
watching Michael unravel in our kitchen back home and packing up his things to
rush him to the Emergency Room, I would place a call to Justin in Charleston, SC.
“Hello. Bluegreen.
Justin speaking.”
“Justin. My name is Danna Young. My husband Michael and I signed up for your
trial package a week ago. My husband is
very ill and I need to cancel our enrollment.”
“Ok. That’s fine,” he said impassively. “We can’t
refund the initial deposit, but we’ll cancel your enrollment.”
“Thank you,” I
hung up.
Why did I choose
that moment to make that call? How did I
know that this was a big enough deal to warrant my canceling this
timeshare? I have no fucking idea. It was an insane – though shockingly logical
– thing to do.
The morning
following our enrollment in the bluegreen sampler’s package, still in Charleston, Mike left to go
for a jog by the water – three blocks from our bed and breakfast. Fifteen minutes later, he was back in the
room – smoothie in hand.
I laughed, “Some
jog!”
He grinned a
bit. “Eh,” he shrugged, “I couldn’t find
the waterfront, so I grabbed a smoothie instead.” I looked at him quizzically, but he didn’t
seem to register my concern. I watched
as he emptied his pockets onto the nightstand. There, in the pocket of his shorts, was a map.
That afternoon,
we shopped in small boutiques along Market
Street, holding hands, sipping on lattes. In one shop, Metropolitan Deluxe, we laughed
at quirky gifts, magnets, and cute tableware.
“These scream
‘Danna!’” Mike said, pointing to some throw pillows with bright pink and yellow
gerbera daisies embroidered on them. So
true.
We browsed for
about fifteen minutes. “You about done,
smoosher?” I asked.
“Yup,” he
replied and walked decisively towards the back of the store.
I just watched,
horrified.
I stood stunned
as he looked around him, turned back and looked at me briefly. I didn’t move. He put his hands in the pockets of his
windbreaker and nonchalantly walked back towards me, past me and out the door –
as though nothing had happened.
Between our
return home on March 11 and that Friday, March 17, I watched as Michael fell
apart. I saw him having difficulty
getting organized enough to feed Baxter dinner.
He put the wrong lid on Bax’s sippy cup and struggled to use a can
opener.
On Wednesday
morning before work, he stood at the kitchen counter, looking concerned.
“What day is
it? It’s Monday, right?”
My brow
furrowed, “Does it feel like Monday?”
convinced that the Socratic method could get him reoriented. He didn’t answer. Instead he asked again.
“It is Monday,
isn’t it?”
“Smoosher, what
did we do last night? What show did we
watch that we love?” He had to be able
to get that.
“24?”
We hadn’t
watched 24 in months.
“Are you
serious?”
“Smoosher,” he
began to get frustrated. “What day of the week is it?”
“It’s Wednesday,
Michael. Remember? We watched American Idol last night?”
He closed his
eyes for a brief second, palms of his hands on the counter, squinting. He began to nod, “Right, right. Yes. I
remember. It’s Wednesday.”
