Last week my parents answered a question about what it’s like having loved ones with disabilities in their lives and what that word means to them,
This week I will rejoin the discussion once more.
Q: What have your experiences been with medical treatment and/or therapy been like? Do you have positive, negative, or mixed feelings about your experiences?
A: I was diagnosed months after I was born and my vision remained stable for many years. I had the occasional eye check-up, but really I avoided the need for more treatments until my remaining vision began to suddenly and mysteriously slip away, when I was in the seventh grade.
I then found out, rather quickly and shockingly, what it was like to have lights constantly in my face. I would have been bothered by all the stinging drops and bright lights, if it weren’t for the fact that I was having terrible pain behind my eyes and I knew, even at age twelve, I was lucky to have some of the brightest minds in ophthalmology overseeing my case.
By this point I had wonderfully experienced parents who hadn’t been dragging me all over the place for miracle cures to my blindness. I didn’t see or experience a lot of negligence. I received excellent care.
As for my kidney failure I know how unexpected that all was and yet my parents still felt horribly that they didn’t do something sooner. How could they have known? They were raising their two blind children, but the rest kind of snuck up on us all.
It took us probably too long to diagnose your kidney disease because we thought it was because of stress and your blindness. Your previous diagnosis hampered finding your kidney failure.
When you feel something is different or not right, you search for the reason. Sometimes it can be a physical problem that can be fixed and it’s done. Other times you get a diagnosis that will affect you for the rest of your life. A diagnosis can be great relief because it explains all of your symptoms and you can focus on dealing with them and getting on with the rest of your life. Other times it can be overwhelming because it predicts possibly even more and complicated problems down the road.
Since I lost all that vision as a teenager I have kept the retinal specialist who treated me then. HE is the best at what he does, but I fear a future of undiagnosed and unpredictable vision loss. Things can only be handled with the right treatments and proper diagnosis up to a point.
Before I end today’s post I wanted to include something I found earlier, a post on a blog by another visually impaired blogger. It is a post about the topic of disabilities in the media and I know that is a big part of what Rose has been doing from the very start.
So please check out:
for more information and next Monday’s question:
Do you think that it’s more important to emphasize medical treatment, life skills, community integration, or a combination of these things?
I think I’ve kind of messed up the numbering of the Awareness Challenge questions from how Rose has them listed, only because I was doing a few in two parts.
I will try to get back on track or perhaps the numbering system went out the window long ago.
Such is life.