Went to an eye doctor this morning that I saw 8 years ago. Back then, early in my processing of my vision loss, I had accepted it, but I didn’t know much about my vision and I was a bit overwhelmed. When I told the doctor I had been diagnosed with Best’s Disease, he said that it didn’t look like Best’s to him; it was a more vague cone dystrophy. He was very clinical in his approach and way of communicating and I thought he was an asshole. Today he was just as clinical, but I didn’t think he was an asshole. He was nice and openly admitted that they don’t know a lot about these eye disorders and he explained that I might have Best’s, and I might not. There were no answers. There was also no acknowledgment of my vision as a strange or serious thing. Only neutral language and talk of returning in a few years to have it checked again. Oh, and the suggestion that my thinning retina looks similar to age-related macular degeneration and might respond to injections in my eyes every two months for the rest of my life. But, those injections won’t improve the retina thinning, just help it not thin anymore, and there haven’t been any studies on eyes like mine so there’s no guarantee that they will work and that means the very expensive procedure definitely won’t be covered by insurance. I left the appointment feeling frustrated and disappointed. Scott and I talked about it as we walked back to the parking garage. I recall saying something like, it sucks to lose my vision, but what makes me okay with it is that it’s so strange and fascinating. I want a doctor to acknowledge that strangeness. After saying that I’m unusual in my perspective and that most people want reassurance that it’s not too strange or severe, Scott added: you want to lean into the freakiness of it. Yes I do. I don’t care that there’s no cure, or that they don’t know much about it. I don’t want to submit to (and pay for) every expensive test they have to exhaust the possibilities of what it could or couldn’t be. I just want an expert to acknowledge the strange and serious and terrible beauty of my vision! But of course, the medical approach to eye care, with its emphasis on fixing and curing and making people “normal” again, doesn’t allow for that.
Here’s a positive thing that came out of that appointment: I advocated for myself! The doctor was about to leave and even though he didn’t ask if I had any questions, I offered one: do you have any resources for living with low vision. He said, oh, of course, that’s a good idea! I’ll give you a referral for a low vision specialist and occupational therapy. Yes. I’m ready to learn more about low vision specialists and their approach to vision and vision loss! (I know that I’ll have to be very clear about what I want and need — and it’s about tips and tricks for navigating and not how to be normal! Advocating for myself her was a big deal; getting information about low vision resources was one of my main reasons for this appointment!
And one more interesting thing, a concept that could be the title of a poem, or at least the primary influence: Variant of Uncertaint Significance. When talking about genetic testing and using it to try to determine what exactly my eye condition is he mentioned it multiple times.
VUS When analysis of a patient’s genome identifies a variant, but it is unclear whether that variant is actually connected to a health condition, the finding is called a variant of uncertain significance (abbreviated VUS). In many cases, these variants are so rare in the population that little information is available about them. Typically, more information is required to determine if the variant is disease related. Such information may include more extensive population data, functional studies, and tracing the variant in other family members who have or do not have the same health condition.
found poems (non Holes)
Before leaving for the ophthalmologist, I returned to a favorite erasure collection, A Wonderful Catastrophe, and read a few poem that offer inspiration:
I listen to the leaves
and
try to forget about
that
World within my head
I
remembered
loss could be
beautiful
I was hoping to run today, but I didn’t have time before my appointment, my eyes were very dilated for hours and I wouldn’t have been able to be out there in the very BRIGHT sun.