LIVING WITH MULTIPLE SCLEROSIS: A GLIMPSE INTO A SINGLE DAY OF LIVING WITH THE UNPREDICTABLE DISEASE AND THE IMPACTS ON FAMILY
Dear Readers: This is my first launching of sharing the extraordinary lives of people who have some type of chronic illnesses. I will write my own stories and hope you will add yours! Please send them to firstname.lastname@example.org. And pass these stories on to help others. Diana
MISSING COGS IN THE GREAT WHEEL OF LIFE
By Diana L. Chapman
It was a gray, winter morning, when I woke up in a good frame of mind. I was happy that my son had a friend over night – a rarity in our small household, a clutch of three.
Immediately, I snapped out of bed, ready to concoct a giant breakfast – so the boys would come back again. All the other moms lavished them with good meals, play stations, pool tables – and most of all in the case of our son – something we couldn’t provide -- other children.
I pulled the eggs and bacon out of the fridge, dragged out the apple bread and flicked the oven and stove top on. For me, it was an honor when Ryan had a friend over. His idea of family was to go to everyone else’s house “where all the kids are.” Because I had multiple sclerosis which attacks the central nervous system, we only had one child.
There are times when you have a chronic illness, such as multiple sclerosis or a variety of other diseases, you have to learn to laugh at yourself. Since this particular ailment likes to attack the memory, it puts you in often puzzling and embarrassing situations – but not the kind of forgetfulness other people go through who immediately acknowledge: “Oh, I forget that too.”
I assure you, it is not the same – and what makes it worse, of course, not all those who have multiple sclerosis even have this ailment or share the variety of symptoms – making this chronic disease a master of illness and illusion. I frankly call it “tailor-made,” as it changes its face for just about everyone who has it.
Sometimes I feel it’s the actually the “Joker” in disguise and no one knows when the Joker will hit. Not you. Not your general practitioner. Not even your neurologist.
On this morning, it didn’t hit me particularly in a physical way – but mentally.
When I got up, I first busily began to put away many condiments stacked up on our peacock-colored countertop. The sun began to peek through the gray skies outside, shimmering her rays in at a 90 degree angle warming up our mustard-colored kitchen on a cool winter morning. Well, as cool as your likely to get in most of Southern California: 50 degrees.
That put me in an even more cozy mood. But then this happened:
Instead of sticking the olive oil in the pantry, I stuck it the fridge. Ok, No big deal, right?
But then came the eggs so I could whip up some scramblers.
I broke one egg open, headed for the bowl, and instead put it down the garbage disposal.
Why did I do that? I couldn’t understand it.
Then came the next egg. I did it again, plopped it down the garbage disposal instead of tossing it into the bowl.
The third time I did it, I began to wonder if the teens would ever receive a morning breakfast at all. Even though I wasted three eggs, somehow I was able to get some into the bowl and whip them up to a frothy, batch of golden-beauty.
When Jim, my husband, bopped into the kitchen, now smoky and smelling like bacon, I kissed him and warned him of all those misfires I was making already.
“Make sure you put the bacon fat into a tin can and don’t pour it down the sink whatever you do,” he reminded me gently after I alerted him to my small travails. “Otherwise, you’ll ruin the sink.”
He even pulled out a can and put it on the counter as a reminder.
Amused, Jim hugged me, grinning at my attempts to get things right.
As far as the bacon fat, in my mind, I had it all resolved. It’s a cinch. I’d pour the oil from the flat pan, to a larger and rounder one, and then it would be easy to stick the grease into that puny container, the size of a small soup can!
Dripping the oil into the larger pan, I raced over to the sink, dropped both pans into hot water, and rinsed the oils down the sink – not yet realizing I had made another mistake.
Then I spotted the tin can on the counter – and knew this was my fifth strike out that morning – and I hadn’t even started the day. Mama Mia! Oh, lordy. Or as the teens say: “OMG,” for “Oh my God!”
Forgetfulness for some multiple sclerosis patients becomes a way of life. It often makes friends and family angry and confused – or more often –befuddled. It makes your family pick up work you’ve – well, forgotten. And it makes some people consider you, well, stupid.
For 18 plus years now, I’ve lived with an illness that’s robbed me of joy, strength, emotional balance – and learned to walk a plank carefully. But even I forget and find myself hanging by my fingertips off that plank.
If I go beyond my boundaries – and don’t plan which is tough when you forget and fail to link things – can mean days in bed -- where if you have a 24-hour brain -- is not the place you want to live your life.
I must also put my situation into perspective. I can still walk and talk – without slurring. Some patients with multiple sclerosis can do neither of these things. I’m not blind – which has happened to thousands encumbered by multiple sclerosis along with the inability to control the bladder or their balance – which has led those who hide their disease to be accused of excessive drinking or drug use.
It’s as though most of us operating with multiple sclerosis are missing many cogs in the great wheel of life. Some of us are lucky and haven’t lost as many cogs as others -- yet. Only time will tell us what will happen next. It could happen tomorrow, the next day, two years from now, 15 years later or maybe never.
Most wounding: Many people I’ve met with multiple sclerosis are 24-hour- a day personalities. Meaning if they could run to the level of a normal capacity, there would be miracles of accomplishments throughout the world that have still yet to be conquered.
Missing those many cogs may keep some of us from flourishing or leading us too prosperous lives. But perhaps we flourish in other ways. There was a time in my life, when I was younger, that I was actually scared of sick people. Now I embrace them.
While I was always compassionate, I found myself even more so – especially with children who have any type of disorder whatever that may be, from cancer to bipolar disease.
Despite all my mistakes that early morning, the boys sat up on the counter top slurping down orange juice, gunning down the eggs and bacon – and thanked me profusely for a good meal. The food vanished in seconds and that made me laugh.
I had to remind myself that the boys didn’t give one hoot about the many mistakes I made. They only cared about one thing – the end result.