Copy write: JERRY GLADMAN -- Toronto Sun
Sun writer Jerry Gladman admits he's scared but has found a
genuine peace after many agonizing moments.
In the last part of his ALS
series, he tells how he did it
Part 1: Living and dying with ALS
Part 2: The struggles of daily life
Part 3: A safe place
Part 5: Outpouring of emotion
So many people I've communicated with since word spread I have ALS have told me over and over how I'm facing this disease heroically and with great courage, dignity and an array of other admirable qualities.
I find it somewhat amusing because the truth is I am scared shitless.
Without trying to sound humble, I really don't see myself in that light. Certainly not overly courageous nor noble nor a paragon of inspiration, nor any of those other characteristics ascribed to me.
I see a guy who has been dealt a lousy hand and has little choice but to
handle it on a daily basis while trying with all his parts to keep from
falling to pieces. I see someone who has good days and bad ones and
works hard simply trying to make it through the night.
I'm sure I'm no different from the other 3,000 or so unfortunate souls
in Canada who pulled the short stick and wound up with ALS on their life
resume. Certainly there are those who fit the heroic and noble profile,
but most of us are just average folk whose luck ran out and we're doing
our best to cope with the fallout.
Like most others handed a premature death sentence, I have gone through
a minefield of stages that eventually paves the way for the final
journey. They were first given clear focus years back by Swiss
psychiatrist Elisabeth Kubler-Ross in her breakthrough book, On Death
and Dying.
The five stages go in progression through denial, anger, bargaining,
depression and acceptance. I think I've revisited all of them at varying
times -- I'm sure everyone does -- but after a while the first four
become somewhat old hat (and a little boring) and you enter a closer
relationship with acceptance. Not always fun, but realistic.
No big whoop. It's basically a process dying people have been going
through one way or another since the dawn of time. I'm sure a great many
don't even bother to identify the stages, but whatever the route you
choose, we all inevitably wind up crossing the same finish line.
Actually there is a sixth stage, although it's the first one you
confront. Shock. Bang! You have a disease and you're going to die. What!
No, can't be. How did this happen? There must be a mistake. Holy crap,
I'm gonna die? This is insane. I can't die. I don't want to die. And so
on.
I'M GONNA DIE
For the first little while, you kind of stumble about with this blank
expression on your face and a haunted look in your eyes, trying to
process this nasty information fate used to conk you over the head. I'm
gonna die, I'm gonna die, I'm gonna die. Over and over until it becomes
your mantra and loses its meaning like one of those song lyrics that
stick in your brain pan.
Once you've actually dealt with the initial blow and huddled with your
family, relatives and friends -- in other words, once the shock has warn
out its welcome -- things begin to settle down. Then you start to think
about how you actually feel. I know they say I'm dying, but you know,
it's weird -- I don't feel like a dying guy. Hey, maybe they made a
mistake.
You are now entering stage one. Denial.
Looking back, I can actually see myself going through the denial mode
and it's almost funny. Almost. You have a couple of good days
back-to-back where you feel pretty good and you start to think maybe
somebody goofed. How can I feel this well and be dying?
Before long you start fantasizing (usually in the dead of night when
sleep is a lost cause and your mind has ample opportunity to roam).
Maybe somebody mixed up the test results and some other poor soul has my
true diagnosis of mononucleosis (along with my share of the lottery.)
Maybe they were simply wrong and this only looks like ALS.
I even have these visions of being called into my doctor's office and
being told it was all an error and I am going to live for a long while
yet. (Great. Who do I sue first?)
Every day you test your weakening muscles and measure them against your
memory of the previous day's testing. It's amazing how often they feel
the same (or better) and you convince yourself you're holding the line,
maybe even improving, son of a gun.
Or else you figure you're one of those lucky ones who will fool everyone
and live 20 years. Maybe it's plateau. Maybe for no explainable reason
it's gone into total remission. Maybe this is the year they find the
cure.
Maybe, maybe, maybe. What if, who knows, could be, why not. And then the
sun comes up and it still takes you 10 minutes to figure out the right
position to enable you to get out of bed. So maybe not.
What's so interesting about this particular disease that often adds to
your denial is that you feel perfectly fine most of the time. You have
to tell people: "I am not sick. I have a disease that weakens my muscles
and will eventually kill me, but I feel pretty good." (While typing
these words I swear I feel normal and not sick in any way.)
Eventually, however, you figure out you're messing with your own mind
and this is the real McCoy. That, of course, transports you to the next
stage. Pissed off (read: Anger.)
Why me? I've never hurt anybody. I've lived a decent life, worked hard,
helped others, given to charity. There are guys running around who
murder, rape and steal. Some beat their wives and children. Others
wouldn't give a drop of water to a dying man. Why not them? Why let
Saddam Hussein and Osama bin Laden live and give me this disease?
Why me, you son of a bitch bastard, what did I ever do to you to deserve
this?
Jerry gets a kiss from his sister, Judy Orellana. His large family and
many friends help see him through his ALS fight.
After a lot more cursing and why me's, you figure out whoever you're
aiming at either has a thick hide or simply doesn't give a hoot. So you
try another tact. Bargaining, deal-making, heartfelt promises.
If only you'll spare me, I'll live the rest of my life as the best human
being possible. I'll help others less fortunate, I'll obey the 10
Commandments, I'll treat everyone like gold. Just make me better.
You even might find yourself appealing to the souls of dead relatives,
as if they could actually influence some higher power. Mom, Dad, where
are you? I need you. You can't let this happen. Talk to the Man. Work
something out. I'm not ready.
But, of course, it is happening and it matters not whether you're ready,
sport. And when you finally allow that to fully seep into your mind,
this pushes you over the edge into Stage Four. Depression. Really dark,
agonizing depression, the kind where you want to bury yourself under the
blankets until this horrendous pain vanishes.
The effect of it is so rotten I can barely describe it. Think of the
worst day in your life and then multiply by 10. You don't just cry, you
weep, you sob uncontrollably, and the tears come from some well deep
down in your being. I can't go on. It's too hard. Please let me die now.
Your family members, shell-shocked victims themselves as part of this
ageless drama, stand by and watch, unable to ease your pain, unable to
find the words to comfort you, and it breaks their hearts.
The worst times are the night hours when you are alone with your
thoughts. You think such dreadful things.
You see yourself on your deathbed, struggling for breath, desperate to
cling to life. Or your funeral service, your casket being lowered into
an open grave, the mound of dirt ready to enclose you for eternity.
And always, always, your loved ones, gripped in sorrow, sobbing in each
other's arms. It's almost too much to bear and you wonder why you
torture yourself so.
But there's more as your mind stretches for the outer reaches. Time has
passed and you watch as your wife, now healed, loves another. She's
happy again. How can she be happy when I'm in this place? And not just
her -- your children as well, going on with their lives.
The Blue Jays winning another World Series and the Maple Leafs, at long
last, sipping from the Stanley Cup. Movies you'll miss, your
favorite
TV shows, Survivor (Year 100.) Special holidays and vacations. And so
much more.
All of it taking place without you.
RELAPSES
You don't want to go to those dark corners, you shouldn't go there, but
your mind answers to no one and goes anyway. And then one fine morning,
at long last, you wake up, look yourself in the face, and say: I am
going to die and there's not a bloody thing I can do to change it. So
maybe it's time I start dealing with it and make my remaining days the
best I can.
Acceptance.
Ah, sweet acceptance, the first day of the rest of your life
when, finally, you can really start living until you die.
I'm pretty certain that's where I am now, or at least well on my way. I
know this is going to end only one way and, aside from that sliver of
hope I mentioned earlier and a prayer that it's a painless, peaceful
departure, I feel I'm pretty well coming to terms with my lot.
Sure, I have some relapses and bounce through some of the stages again,
but I know it won't last. And if things get a little rougher as the road
shortens, I may turn to some professional counseling. As well, I also
have a huge pile of books on dying well and thoughts on the hereafter
I'll eventually get to. I'll probably even give Tuesdays With Morrie
another look-see or three before I'm done.
Mostly, though, I plan to spend as much quality time as there is with my
gang. I'm lucky to have such a devoted family, pure treasures who watch
over me like I'm the Hope Diamond. And so many relatives and good
friends, people who seem to care for me as I do them.
But you know what, fellas? I have absolutely no kick coming.
Oh sure, I'd love to spare my family the burden of having to care for me
when things turn worse, and whatever pain they experience by my dying
and absence from their lives. But I know -- and they know -- this, too,
is part of life, and time and memories will heal their hurt.
That aside, I really have nothing to whine about.
I've had 60 spectacular years. I grew up in a loving family atmosphere
with two special parents who loved each other madly for 50 years, and a
brother and sister I cherish not only as siblings but as lifelong
friends.
I've known wonderful women who shared my life at different times, and
wound up spending the past 25 years with one of them, a partner who has
no equal. In addition to being beautiful and the sexiest broad I've ever
known, Norma has an endless capacity for giving and, for some
unexplainable reason, seems to love me as much as I love her.
SHARE OF SCOOPS
I've also been blessed with three children who grew to be such splendid
and loving adults (not to mention four gorgeous grandchildren who are
following nicely in their footsteps.) If there is anything for which I
would love to be remembered, my personal legacy, if you will, it's the
privilege of being father to Lee, Jesse and Caitlin.
And, of course, Davey the dog, a delightful companion for the past eight
years, who shared my space during so many late-night hours (as well as a
portion of my meals) and asked for nothing in return aside from a little
loving and to be let out for his nightly whiz.
Friends, so many wonderful, interesting and enjoyable friends, many of
them stretching back through most of my years. I know it's been said
before, but if one's worth can be measured by the quality of one's
friends, I am the richest son of a bitch I know.
I've had a tremendous career with so many exciting and enriching
experiences. I've interviewed some of the most fabulous people in the
world (famous ones, too), reported on countless big news stories and
traveled to so many fascinating places. Even had my share of scoops (I
was the first one to get the news they found the Titanic.)
And the best is they paid me for something I would have gladly done for
free (most of the time.)
And to top it all, off they allowed me to take what I've learned over
the past 44 years and pass a good chunk of it on to so many promising
journalists of the future. My four years teaching journalism at Ryerson
was easily one of the most rewarding and fulfilling experiences of my
life.
But there's one other significant reason I have nothing to really
complain about. And that's all the people who have had it so much worse,
many of them whose tragic stories were told under my byline.
So, no, I'm not heroic, courageous or special. Nor do I have any real
kick coming. And most of the time -- most of the time -- I believe that
in my very heart and soul.
In other words, it's been a slice. And you know what else?
Ya never know.
