Sun writer Jerry Gladman calls the effects of Lou Gehrig's Disease 'bumps in the road.' In Part 2 of his series, he describes the struggles of daily life.
Original Source and Copy write: JERRY GLADMAN -- Toronto Sun http://www.canoe.ca/Columnists/gladman_nov3.html
Part 1: Living and dying with ALS
Part 3: A safe place
Part 4: Acceptance
Part 5: Outpouring of emotion
I stood at the sliding door leading out onto the deck from my kitchen,
watching the downpour bounce off the glass tabletop. Norma quietly
slipped in behind me and wrapped her arms around my waist.
"Wishing you could run barefoot through the rain?" she asked.
Although I couldn't really reply, I nodded. That was, in fact, exactly
what I was thinking. Along with the reality that I really can't run
anywhere any more, rain or shine, and wondering how many more summer
rainfalls I will see before I become another ALS fatality statistic.
I turned away, stumbled into the family room and began weeping --
something I seem to do a lot more of now, although it's most often a
side-effect of the disease rather than an emotional outpouring over my
tough luck (more on that later). This time, however, it was pure
sadness.
Not being able to run through the rain, or anywhere, is only one of the
multitude of things I can no longer do. The list is frustratingly
endless and yet seems to grow longer with each passing day. Most of
those things are normal, everyday activities we all take for granted,
while others are treasured acts, the loss of which is heart-achingly
sad.
Tender loving care keeps Jerry going as wife Norma dries his hair and
helps him shave after his shower.
For instance, I can no longer kiss my wife with anything resembling
passion, which is a tragedy because she always said I was a great
kisser. (Our goodnight kiss on our first date -- a blind one --
magically transformed a relatively crummy evening into a wonderfully
enduring love affair.) But the disease has affected my tongue, jaws,
throat, nasal passage and lips.
I can't kiss, I can't whistle, I can't blow my nose, I can't suck on a
straw and I can't blow up a balloon for one of my grandchildren. I can't
sing, I can't speak with any clarity, I can't yell, I can't argue, I
can't answer the phone and I can no longer rail at the TV or newspapers,
which was also one of my passions.
I can't eat a meal without choking at least once (more on eating later,
as well). There are many things I can no longer eat or drink or chew
(like gum and candy). I can't eat a steak or any tough meat. I can't eat
a salad, a staple at most dinners (too many slipperies I can't manoeuvre
into chewing position). And I can no longer go out for lunch with pals
(takes me too long to eat and then there are the choking issues).
There are many other things I can't do. I can no longer take a shower on
my own. The movement required for washing and drying whacks me out and
my unsteadiness on my feet makes it dangerous. However, we have found a
way around that -- Norma gets in the shower with me and does all the
heavy work (need I say showers have never been this much fun?).
I can't cut my food with a knife and fork and must use special utensils
to accommodate weakened muscles in my wrists, hands and fingers. Can't
cut my own nails or shave. Can't manipulate the buttons on my pants or
tie laces on shoes. Turning keys and door handles is a challenge. Same
with lamp switches and TV knobs.
A toddler probably has more strength when it comes to lifting things.
Books, magazines, coffee cups, all sorts of everyday items you wouldn't
think twice about. However, I overcome this with various strategies I've
been forced to develop. Some parts of my hands and arms still work, so I
adjust accordingly, if clumsily. But it's a royal pain in the ass.
And speaking of that area, so far I am able to fend for myself, albeit
with the occasional acrobatics. The big fear, of course, is the day when
I have to ask for help with bathroom duties. But my mentor, Morrie
Schwartz (remember Tuesdays with Morrie?) convinced me that isn't as bad
as I think. Sit back and enjoy it, laddy (see showering).
I used to be one of the faster typists in the game (two fingers, so I
didn't have that far to fall). No longer. I've not only slowed down
considerably, I now have to use aids attached to my desk that do all the
work for my arms. I'm writing this, so obviously they work. But slow.
What else can't I do? Can't walk very far without the aid of a walker.
Can't cook or prepare much in the kitchen. I can still drive without any
problems, but I don't because it makes me nervous and it's dangerous.
Can't do household chores or fix stuff. Can't shovel the snow, take out
the garbage or mow the lawn (I didn't say it was all bad).
There are a million and one other things -- I'll save them for the
movie. But it gives you an idea how this disease permeates your every
movement. There are certainly times when it makes you want to give up --
this week it took me 10 minutes to remove a pair of tight-fitting socks
-- but we ALSers are a more hardy bunch. We find ways around.
Actually, that's one of the key elements to surviving with this illness.
You develop strategies to enable you to do many of the things you did
before. The first strategy, of course, is asking for help. Can't do it,
ask someone to do it for you. Sure, it's hard in the beginning, but not
as hard as when you have to pee something awful and can't get your pants
open.
(Timely example: As I was writing these words, I tried to be bold and
take a drink at the same time. Naturally, I dropped the glass and
spilled pop everywhere. No sooner had I growled -- I do a lot of that --
son Jesse, 22, was walking by, saw what happened and quickly cleaned it
up.)
Another strategy is trying different approaches. Can't do this, do that.
Remember the socks? My fingers weren't strong enough to slide them down,
nor could I step on the toes and pull them off that way. So I got a
wooden spoon and used it as a shoehorn. Success.
It's amazing how inventive the human mind can be when necessary. I was
trying to light a match the other day. Couldn't do it no way no how.
Couldn't even tear it from the package. (I still have a pretty solid
grip, but can't work the fingers.) First I got scissors and cut the
match off. Then I turned on the burner on the stove, touched the match
to it and, voila, fire.
The switch on our bedroom lamp is too stiff. I use pliers I keep by the
bed. Works on the TV, too. Can't easily swallow the 20 pills I take each
day; I put them in apple sauce. Can't open the pill bottles; I now use a
pill dispenser that Norma loads each week. Can't manoeuvre a straight
razor -- use an electric one (I hate it). Can't easily navigate the
stairs; I hold on to the railing. Can't do buttons -- wear sweatshirts
and pants with a stretchy waist. Can't drink from a can or bottle -- use
a glass. I read three papers a day and my arms get tired holding them.
So I sometimes sit at a table and let it do all the holding.
Pretty smart feller, eh? Nah. Folks have been finding ways around since
the very first caveman figured out that the cute ones with the curves
were ladies (okay, I like Mel Brooks). But it's true and amazing what
you can get done if you have to.
Now if I can only figure out how to shuffle a deck of cards with my
elbows.
Here's what I can do:
I can't speak clearly but I can make myself understood in a pinch with a
series of mutterings and charades. But mostly I use a laptop talking
computer, a wonderful device that speaks for me -- I type, it talks. I
tried to get a Mel Brooks' old Jewish man voice for some character, but
wound up with somewhat of a Swedish accent named Harry.
Swallowing is a slow, even dangerous process, so Jerry has his food cut
in small pieces and medicines are taken with a spoonful of apple sauce.
I take Harry everywhere with me -- including interviews -- and it works
out fine. I also use him for phone calls occasionally, although I often
have to repeat a sentence. Harry doesn't mind. But the person at the
other end has to allow for typing time.
I can also communicate through e-mail, which has been my saviour. I get
probably 30 e-mails on an average day (aside from those promising me
larger body parts or cheap Viagra), both personal and business-related.
My problem is I am as long-winded in e-mail as I am in regular
conversation, so I whack myself out responding.
Eventually, I won't be able to use the computer so somebody will have to
respond for me. And then, I fear, this machine will go quiet. But I hope
that's still a ways off.
They still publish my work every week in The Sun so I am able to do my
job. But not without the aid of my new executive assistant, Norma. She
sets up all my interviews, accompanies me and takes notes (I also tape).
The people seem to adore her because she's so open and fresh. It makes
my job so much easier. (If I could only teach her to write, I'd be set.)
I may no longer go out for long lunches, but I can receive visitors. I
have a wide range of wonderful friends and relatives who drop by, some
of whom also take me on outings, although I can't walk too far. A couple
of close buddies come by every week, imbued with the spirit displayed by
writer Mitch Albom in his Tuesdays With Morrie. We (meaning me, them and
Harry) have wide-ranging and enjoyable chats.
I go once a week to watch my two sons play baseball (although 20 years
apart, they patrol the outfield side by each) and they provide me with a
multitude of thrills. Harry is one of the louder cheerleaders.
I have my family close by and they look after my every need, which is
pampering, in a way, but I enjoy (and appreciate) it to my very core. I
am also seldom alone and they are as splendid company as one could have.
(And I love them so dearly I can barely say it without tears forming.)
As I said, I can't walk very far, but we can now park close, thanks to
the new handicapped decal on our dashboard.
I can still read my books, papers and magazines without enormous
difficulty. I watch TV. And during the summer I could lie out on our
deck -- with Dave the dog, who seldom leaves my side, as company -- and
enjoy the fresh air.
And, of course, I have my mind, which is untouched by ALS' long reach
and will apparently remain so for the remainder of this journey. There
is certainly plenty of time for reflection, and lately I have begun
rummaging about in my past.
Once you come to terms with the idea your time here has been shortened,
looking back over your life is a normal and rewarding reflex. Did I live
well, did I treat others properly, could I have accomplished more, did I
give my close ones the love and support they deserved? Is there still
time to do more, to fill in the blanks, to right the wrongs?
So you can see, despite the avalanche of restrictions, my days are quite
busy and my life full of riches.
And besides, what I often tell people is that I am not sick. I have a
pretty serious disease that makes my muscles useless and will one day
kill me. But I feel fine. I have no pain. And my mind works as well as,
if not better than, it always did. So I'm raring to go.
Oh yes, there is one other thing I can do. I can hang on to a small
sliver of hope, leave open a tiny crack in the door, that things may
turn out differently from the way they now appear to be scripted. A
cure, more effective treatment, a remission for a spell. Who knows?
But yes, along with all else I can do, I can still hope.
Remember those bumps in the road I mentioned?
I guess if they were restricted to the above-mentioned weaknesses and
difficulties, life would be uncomfortable and trying but reasonably
bearable. We're humans. We're built to adjust.
But alas, there are unfortunately a few bumps that extend a little
further along the path, rise a bit higher and inflict a touch more
damage to both body and soul. More than a touch -- a lot.
The least of them, albeit potentially most dangerous, are the falls.
Once the disease penetrates your legs, walking becomes a tricky
proposition. Some liken it to a Frankenstein Stroll. The danger is
you're unsteady and if you're not careful, you can take a nasty fall.
I have already had my share of tumbles. The main problem is my arms are
weak so I can't naturally break my fall. They tell you to try to fall
straight down, but you don't always have time. I've had an assortment of
head knocks, bumps and bruises and even a black eye. So I have to make a
conscious point of being ultra careful.
Getting up from a fall can also be an adventure, but that's another
story. Let's just say it's ideal if someone is nearby to help you
upright.
Choking. That's a delightful bump and it comes in two forms.
First is your everyday choking and it relates to problems with
swallowing. Most ALS folks don't get that until the final phases of
their disease. But to those with Bulbar ALS, it comes early and often.
At least once every meal, a little something gets caught mid-journey and
causes coughing, throat clearing, gagging and repeated swallowing until
the little beggar finally goes down. It also happens with liquids.
(As I was reading this section over, I was eating a tuna sandwich. Tuna
can be dry and often little shreds get stuck in my throat. I started
coughing and clearing my throat, then took a quick drink and it cleared.
My ever-vigilant better half ran up the stairs for nothing.)
After a while, you become accustomed to this little feature and develop
strategies to combat it. It's annoying and uncomfortable, but also
manageable. It just means you eat a lot slower and more carefully.
Then there's Choking. Real Choking. This comes about in the
old-fashioned way, when a piece of food gets caught in your throat and
blocks the airway. Because of weakened muscles, you aren't able to cough
it up as easily as a well person might and you require assistance.
All my family has CPR training and can perform the Heimlich manoeuvre.
Norma had to use it on me twice and both times I was sure I was a goner.
To safeguard against choking in this manner you make sure every morsel
that passes your lips is cut into small, manageable portions.
Alas, the result of all this safeguarding is never-ending meals. Think
about it. Not only does it take forever to chew something and then
somehow manipulate it into position for swallowing, but then you have to
make sure it doesn't stop midway or lodge further down in your throat.
I'd say each meal takes me a good 90 minutes to get down. The danger
here is you get so bored reheating your food and sticking with it, you
tend to want to give up. But you can't. If you don't eat enough, you
lose weight. Lose enough weight and they have to surgically insert a
feeding tube opening in your stomach. Although I know I will eventually
require one, I'd like to avoid it as long as possible.
(The good news is at my last checkup, the scales showed I've only lost
seven pounds since May, which is excellent and due to my perseverance
and willingness to down cold meals.)
Because of certain things you can't manage to get down, you are forced
to give up many favourite foods and seek others to supplement them. It's
an ongoing battle and many of us dread mealtimes. Believe me, it's
terribly frustrating and requires some serious adjusting, especially
when your appetite is as solid as mine.
But all of the above are pikers compared to my "favourite" bump.
One afternoon, in the midst of an interview with a voice therapist at
the Sunnybrook clinic, I started to giggle for no reason. Then I began
to laugh, uncontrollable laughter that brought tears to my eyes. I was
embarrassed, tried to explain, but could not stop. I laughed like a
loon, literally.
The therapist ignored it because she had seen it many times with other
ALS patients. It's called emotional lability and it's a son of a bitch.
The condition, which involves both laughing and crying, generally
affects people who have diseases or injuries of the brain and nervous
system (ALS, multiple sclerosis, Alzheimer's, severe head trauma or
stroke). Although there are still many unknown factors, some researchers
believe it may result from disruptions in certain pathways in the brain
that are important in expressing and controlling emotions.
While many are tearful and sad as a natural reaction to living with ALS,
it's most often a side-effect of the disease and about 50% of ALS
sufferers experience it to one degree or another. It may be triggered by
something funny or sad, but the reaction is way out of proportion to the
event. And very often, laughter can turn to tears in a flash.
In some people, it's controlled by medication. So far, I haven't been
too successful in that regard.
I first noticed it while watching TV and laughing at something that was
only marginally funny or tearing up at the merest suggestion of
something sad. Other times, I'd start laughing for absolutely no reason.
Or crying.
(I really knew I was in trouble when I was laughing louder than the
laugh machine used in the premiere of the Whoopi Goldberg TV show when
there was absolutely nothing to laugh about. Hey, maybe I should hire
myself out to Hollywood.)
It's much worse now and it's caused me some truly embarrassing and
uncomfortable moments, although most people are wonderfully accepting
and understanding once they know what it is. However, my tendency is to
stay away from a lot of social situations where I know it's bound to
happen.
The worst time for me was at my grandson's bar mitzvah. Soon after I
arrived I began laughing in a high pitch and couldn't stop. Norma and I
left the main room in the synagogue and scurried upstairs to the
balcony. When it continued, we left rather than disrupt Jordan's special
day.
As soon as I got into the car, the laughter became uncontrollable
weeping, but at least I now had a legitimate reason.
It's happened several times since -- at my sons' baseball games, in
interviews and at family functions. There are also periods at home --
which is still my safest haven -- when it happens repeatedly. Often,
too, it's triggered by my feelings over my condition and how it affects
my family and the fact I likely won't be with them for too much longer.
For me it's a royal pain in the butt, mostly just embarrassing, but it's
something I have to get over. Or stay home.
Meanwhile, all of these bumps in the road, big and small -- and I know
there are even more trying ones down the highway -- have taught me stuff
I know other ALSers have learned before me.
The main thing, of course, is to not let them defeat you. Don't fear
them. Accept that they are part of something beyond your control.
Embrace them, learn how to cope with them, and then shove them aside.
They're bumps.
Let others help you. This is not a disease for heroes so there is no
sense in trying to go it alone. Let others in, especially those who love
you, be they family or friends. Let them help you, comfort you and love
you. And love them back.
Don't dwell on what you can't do. That's done and no wallowing or
whining will change that. Focus instead on what you can do -- and do it
-- so you can live as productive a life as possible.
That means trying to maintain as much of a normal lifestyle as you did
in the past. Sure it's hard, but it's also doable. You're still in
control of you, no matter how much of an ass-kicking you're taking.
And guys, keep smiling. There's nothing like a healthy sense of humour
to beat back the demons.
The best way to accomplish all of this? Adopt the ALS motto.
Live life one day at a time.
