CAGES
My mother always laughed at a photo of my nervous uncle babysitting me on a west coast rock and shell littered beach while the family hiked. My childless and overly cautious Uncle Harry watched his rough-and-tumble niece fall, get up and fall again. He chased me and returned me to his log but I wouldn’t be still. Needless to say I stretched his comfort level on tenterhooks.
In desperation
he fell back on the tried and true method of containing wild beasts of all
species – the cage. It was easy to build and did not interrupt his beer
drinking. That was important. He puts chunks of driftwood logs in a square with
me in the middle. When I mastered climbing those he put another log on top and
then another until eventually all four driftwood walls soared above the top of
my curls. I drank from my bottle, Harry drank from his bottle, I was caged and
all was at peace. That was my first lesson about cages.
And suddenly I
was going to be forty in nine days. The neurologist examined me, talked for a
long time but all I heard was, “Barbara, you have multiple sclerosis.” I was
gentle with him and told him it was alright, that I knew something was wrong
and that it was fine. After twenty years of symptoms, a bevy of doctors
suggesting everything from stress to small strokes, I could now allow the
illness to take me where it chose. It felt good to have the weight of guilt and
failure removed.
“I’m just so
relieved I’m not neurotic,” I said. “I don’t need to feel like such a loser
anymore.”
The elevator
closed behind me and in that stainless steel and artificial wood paneled cage I
began to cry. I didn’t stop crying for months. There were days full of sobbing
with ugly gagging noises on every intake of breath.
The energizer
bunny ran out of batteries. My sales job ended. I could not work in my own
business. Friends vanished. I wasn’t fun anymore. I moved from a battery
operated scooter to a walker to a cane as the exacerbation passed.
My rage did not
heal at the same rate. How dare my body do this to me! Counsellors assured me
that anger was a healthy part of grieving and I would finally reach the
pinnacle – acceptance. Like hell I will! My pinnacle has been an agreement with
my demon MS – an agreement which is a bit reluctant on both our parts. MS won’t
cage me and I won’t abuse him.
Yes, “him”
because in my case MS is a male. My symptoms increase at night, between the
sheets. The traveling numbness occasionally reaches its tentacles up my leg and
into my crotch. Yes, it’s a man. He caresses me, not always gently. My thoughts
stop, consider what he’s doing and move on. When he pinches he wakes me from my
sleep and I lie as still as I can hoping he’ll get discouraged.
He is not easily
put off and sometimes I am forced to get up, pace and amuse myself in front of
the computer. I try to explain to him that sleep is my strongest weapon against
him. He challenges me in that chest bunting way that again assures me that he
is a man. I know I can wait him out so I smile one of those patient womanly
smiles that drive men nuts.
The pain that MS
causes at random times in random places in my body has been unexpected. It
takes my breath away and I am discouraged and depressed when I wonder why this
particular symptom has happened to me. But what would I want to trade the pain
for? Loss of eyesight? A tremor? A
wheelchair? Loss of the ability to speak? Thanks but I’ll take the pain.
I struggled to
find out who I was, what I was, what my worth was. My value was less than it
had been the day before the diagnosis. A friend suggested that I write my own
obituary. Did I want to be remembered as a person who could sell a fine
business form, could slice a ton of salami or would I want something else said
at my funeral. Writing my obituary forced me to look at, really look at life
and ask myself some questions. Am I my job? Am I money? How do I want people to
remember me – smiling or crying? Am I a good friend? Do I love? Am I true?
I learned that I
did not find out who my friends were when I got sick. I found out who I was. When
my walking slowed down I had time to look at butterflies, buds and stars. It is
a journey to learn how to look past obstacles, look around them and see the
horizon. That has given a depth to my life that I didn’t have before. The freedom MS
has given me is a blessing. It has given me the ability to understand aging,
disability and death at an earlier age than I would normally have.
The photo of the
child in a driftwood cage is a picture of a child waiting to grow up, to learn
and become me. This new me walks with a cane - not well but well enough to allow me to enjoy friends and much laughter. I was a family caregiver for my parents, aunts and uncles and my spouse. I am involved with a family caregiving society and was named Distinguished Honoree at National Philanthropy Day. My involvement with a wonderful group of women who care for family members with dementia continues although Mom has been dead for four years. I also love that I am forced to rest, to breathe, to think and to grow.
MS, I think we
need to talk. Today you will be quiet, you will stay out of my way, you will
not cage me but we both know you are not gone forever. You’ll be back caressing
me tonight for I get lonely in the dark. Just try not to pinch.
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