Tuesday, 21 May 2013

Illness through the eyes of a child: Guest post

My friend Melissa has shared a story from her childhood - with incredible honesty and personal reflection.  As you'll read below, a child's experience of any disease - MS included - may not be what you think:

Illness through the eyes of a child
By Melissa

When I was 11 years old my mom mysteriously lost the sight in her right eye, quite literally overnight. She went to bed with blurry vision and woke up in the morning seeing nothing but grey. It was a rainy Saturday. I remember because my dad had dropped me off at an early morning figure skating practice and I bolted from the car not wanting to get my tights wet because they wouldn’t dry in the rink.

When I was picked up an hour later my sister told me our mom’s eyesight had not improved. I said something smart ass about her just needing glasses.
I still recall my sister’s stern response: “Melissa, this is serious. Everything looks brown and she’s going to the hospital.”
I remember I stopped smiling and got really quiet.
By the time our mom got to the hospital an hour later all she saw in her right eye was black. Nothing. Her eyesight was gone.
The neurologists were puzzled. They had no suggestions. It was a scary time. I couldn’t really talk about it with my friends because they couldn’t relate to what I was going through. I felt alone and confused. Extended family members seemed to not know how to talk to my sister and I about what was happening. Well-intentioned relatives seemed to either completely ignore what was going on or ask questions that really should have been directed to adults. At a time when my friends were obsessing over New Kids on the Block, I was preoccupied with wondering if my mom would ever be able to see me again. Would she be okay? Would I?
My mom stayed in the hospital for several days, and her eyesight slowly came back. With no diagnosis as to what caused the problem, she was declared “better.” Life went on.
Not knowing why my mom had lost her eyesight was worrisome to me as a kid. Two years prior my dad was diagnosed with pancreatic cancer. Knowing what was wrong with him somehow made it easier to understand what was happening to him, even if no one could tell me whether he would live or not.

I don’t remember my parents telling me my dad had cancer. I figure they must have told me at some point because I wasn’t oblivious to what was happening, but I just don’t remember that moment in time anymore.
What I do remember is the look on my grade four teacher’s face when she read the note I handed her from my mom, which came in a sealed envelope so I couldn’t peek.
I remember my sister and I visiting my dad in hospital the day after his surgery, but not being allowed to go to his bedside. My mom made us wait in the hallway for my aunt to pick us up, all the while listening to the beep-beep-beep of the various machines hooked up to him and the thwumpa-beep of the respirator. I guess my mom thought we’d be scared to see my dad. I stole a peek into the room and just saw a pile of blankets, a bunch of hanging bags and noisy machines, and my dad’s arm with a tangle of tubing attached. I went back to waiting in the hallway.
I remember my best friend deciding one day to stop being friends with me. One day we were friends, and the next day apparently we weren’t. She informed me of this by stuffing a note through the vent in my locker that said if I didn’t grow up that she didn’t want to be friends with me anymore. I don’t know what she was referring to, but I remember feeling like I could throw up. My dad was on death’s door, and I had somehow lost my best friend. I was 9 years old.
I remember friends and family members asking me how my dad was doing: was he going to recover or was he going to die? I’d answer the seemingly endless questions, but secretly wish that someone would ask me if I understood what was happening, how I was doing, and if I was okay. But rarely did anyone do that.
But by some miracle, and against all odds, my dad survived, though 23 years later his battle with cancer is still ongoing.
A little over a decade after my mom lost—and then re-gained—her eyesight, she suddenly went numb from the waist down. It was a sunny spring afternoon. Once again she went to the doctor, and was finally diagnosed with having MS. That tingling and numbness never fully went away, and her symptoms have only gotten worse over time.
She now cannot walk for any amount of distance without assistance. She’s fallen too many times for me to count. It’s a miracle she hasn’t broken anything (yet). We spent Mother’s Day (of all days) three years ago shopping for a walker. The weakness in her arms meant she couldn’t hold her newly born granddaughter in the hospital two years ago. She was in the midst of another “attack” and didn’t have the strength to hold her safely. She’s got other symptoms, many of which she doesn’t talk about.

I’ve had my ups and downs with dealing with my mom’s diagnosis, worrying about her physical and mental health, and how she will cope if my dad—her husband of nearly 41 years, her best friend, and primary care giver—dies. MS has changed our lives in so many ways, and I’m still in an evolving state of emotions. Throughout her good days and her bad days, my mom remains ever positive. She proudly proclaims she has a “rock star parking pass” – which is a sticker for the car that gets her accessible parking. No more circling forever around parking lots. Plus, my daughter LOVES sitting on my mom’s walker and being pushed along.
While MS has robbed my mother of so much, it can’t take her laugh, her smile, or her spirit.

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