Here we are and we’ve arrive at the month of August and more
Last week I got my parent’s side of the diagnosis story and how it all began:
But I also mentioned, at the very end of the post, that I would be starting to look-back on the part I could remember.
Q: How has your life changed as a result of that diagnosis?
A: That diagnosis,
was my life, my normal and my reality. I don’t remember anything different.
So, as for how my life has “changed” – it hasn’t. It’s an ever-changing state of being, of course, but I do the best I can with the life I’ve been given.
That is why I’ve decided to move on with describing the diagnosis of subsequent conditions I can recall. This allows me to get a better sense of what my parents dealt with with me and my brother.
Of course, that was from the perspective of a parent. Every parent just wants to know that their child can and will have a happy and productive life. Once they educated themselves, all there was left was to take the steps they could to give us the best chance at that happiness.
This is why I made out as well as I did for the first several years of my life.
Education and socialization were issues to be faced and I was able to find success in both, to varying degrees.
I visited the eye doctor very rarely, as there was really no need. That may sound strange, but as a child I was healthy and I lived my life, like any other child.
My level of visual impairment was stable.
I felt the cool, smooth floor of the lounge/dining hall against my cheek. I don’t recall which camp activity we were engaged in, as to why I was lying on the floor in the first place, but this gave me the perfect opportunity to give into my exhaustion.
Nausea gripped me. I was eventually given some sort of children’s Tylenol.
All down the hall of my particular girl’s cabin I could hear friendly chatter and laughter, lots of fun to be had, but I wasn’t taking part.
I stayed in my room, in my bed, racked with the most painful of stomach cramps. I was away from home and I was afraid.
“Are you feeling sick?” asked an older girl.
“My stomach really hurts,” I replied.
“It’s okay you know,” she said, patting my arm reassuringly. “It’s normal. It’s what happens to girls around your age.”
She was referring to what I had learned about the year before, in health and sex ed. She assumed I was experiencing menstrual cramps.
I wasn’t. I hadn’t gotten my period and wouldn’t, for five more years. This was something else.
A few nights later I woke my roommate up, to the sound of me throwing up, on the carpet between our two single beds. She ran to get help from our cabin’s head counsellor.
I spent the final few days of camp, while the other children were out participating in the many sports and recreational activities, in my bed, in that cabin. They brought me broth and crackers.
This was the summer before my sixth grade year, before I would be diagnosed, before my parents would once more see their child diagnosed with an unwanted and unexpected condition.
My life would be forever changed. I would know what it was like to feel scared, ill, and uncertain of many things. I would suffer through more fatigue, stomach cramps, and general nausea. The diagnosis of kidney disease, to add on to the already present visual impairment would add a level of complexity that none of us were prepared for.
As I look back, that was the summer it all began, but had been going on even earlier, even as I was unaware of any problem.
Twenty years ago seems like such a long time, as I look back in reflection, and yet not. I can say I learned a lot about myself and how to appreciate life, from the age of eleven or twelve, of which I may not have learned otherwise. That, at least, is what being diagnosed with any of these things can offer in the way of positive life lessons.
The Facebook page is:
For next week’s question:
How has public perception of disability changed in your lifetime?
I have been reading up on this issue lately and will be back to answer with my thoughts, next time.