Dear Internet,
It has been so long! Since last we spoke I got very well acquainted with the anger stage of grief. The genetics lab that had told me they would hopefully have a spot for me in September, told me, at the end of August, that I would not be able to get in until next year. I, admittedly, went a little ape shit. I broke up with my former wizard of eyes (retina specialist) after he failed to call me back amidst my growing wrath and panic.
I found a new doctor. Just an opthamologist. He was recommended by a friend as the best in the city and while he is not a retina specialist, what he is AMAZING at is doggedly perusing a thing and making the connections with the various people in the field to get it done. He made a connection with the best genetics lab for RP in the country. It is in Oregon. When the results are in, the director of that lab will go over the results with me personally.
The only snag… we had to get the blood to them, and as a normal sort of eye doctor, we found ourselves without the means to draw the blood.
So I went to a random blood testing place that draws for outside labs. Perfect I think. I give my doctor their fax and head over. When I arrive the receptionist is all “Oh! You are the person that belongs to this weird fax!” The instructions for the draw and where to ship it were hand written on his letterhead.
The lab wanted to know where the requisition form was. When I stared at them blankly, they showed me one. It was a very. Complicated form, filled with little boxes to check off which things you wanted to test for. I told them a form like that for the thing I need tested does not exist. So they shrugged, drew two vials of blood and then handed my own blood back to me!
They would not ship it to the lab. They would not give me a box to ship it in. They suggested FedEx. And they said to send it priority over night.
I walked out of the lab with two vials of my own blood in a zip lock baggie with a hazardous label on it.
At FedEx, I grabbed the smallest box they had and stood awkwardly in line with my box and ziplock trying to look normal, while the woman at the counter struggled mightily to get the address of the man standing at the head of the line, correct. It took a long time. And she was very frazzled. It was my intention to be very nice to her in the first instant of our interaction so that she would want to help me figure this out.
To be fair, I was nice to her for about a couple seconds before her face started looking all alarmed and she repeatedly told me no this could not happen, no I could not use that box, no she could not sell me a box for shipping blood and by the way where I had even gotten the blood?! To this I motioned at my bandaid.
It was about this time that I rejected everything she was saying and told her “no, they sent me here, you need to help me make this happen.” This did not work either.
So, feeling as though I had hit a wall I told her I had a rare genetic condition and that this blood needed to get shipped overnight to the one, and only, lab in the country that tests for this condition. And during saying that fairly complex sentence I began to cry, a lot. That sentence was largely broken up into blubber bits of itself and strung back together sloppily with the snot, mucus and tears leaking out of my face.
The two other people behind me in line stood silently, valiantly engaging in the culturally normative behavior of ignoring uncomfortable things, like weeping young ladies in a FedEx.
The stupid cow clerk went off to find someone else, someone less stupid and cowish than herself. My rescuer was a trundle-ee sort of fellow, with the Chinese characters for strange brother on his wrists. The characters wouldn’t really be put together like that in Chinese. It would sound weird, but individually their meaning was correct, even if the character used for brother was weird and archaic.
The point is, the strange brother was a gem. He found me a box and packaged the vials in crumpled up papertowel. He assured me that this was not his first rodea, and that there was always a way. He didn’t even charge me for the box. He then took the funny hand written note and entered in the addresses correctly the first time. I was so grateful.
So the moral of the story is, if people aren’t listening to you, cry. It will be so awkward for them that they will do anything to make you go away. Also, people are often annoying and incredulous, but sometimes wonderfully kind and considerate. Also, if you can’t not cry, you might as well get over your own embarrassment.
As to the painting. The feature painting is a small painting of an aspen grove in summer. It is very green, which is my favorite color. I intend to give it to my new doctor for him to keep in his office. It is small because offices are often not great places for large pieces.
As to the genetics.. the results should be back in a month.
Going Blind 