After my screening visit May 18, I returned to the Massachusettes Eye Research Institute in Cambridge on June 7 to begin the alpha feta protein study regarding the drug’s usage in treating moderate to severe uveitis. There are, as I assume is typical in these types of pharmacological studies, many unkowns. Neither I nor the doctors, for example, know which patients receive the placebo and which receive the actual drug. Another is, providing I receive the drug, will it work?
The macular edema in my left eye has progressed to the point where my vision is significantly distorted. Where there are straight lines I see waves. And maybe I’ve been in denial but I guess I have just been assuming it would get better. Dr. Foster, however, made the condition seem more dire than I had assumed. He said, very diplomatically, “Regarding the not-so-perfect vision in the left eye, I’m not willing to give up yet.” And that really took me aback. Not willing to give up? Was it THAT bad?
Denial is an interesting thing. It helps us survive the most difficult of circumstances but can also be a defense mechanism that hangs around too long only to do more harm than good. I think for me it’s now doing the latter. I feel like I really need to wake up and get the fact that I could lose my vision and act accordingly. I need to look into alternatives and visual aides. There is a lot of equipment available for the visually impaired, although I still can’t fathom classifying myself in that category.
Up until now I haven’t wanted to even consider that I could be forced to be dependent on others just to do simple things others take for granted…that I take for granted. And in all honesty when I think about this the self-pity party kicks into gear, as does anger. But those emotions are fruitless. I just read a zen related quote about “big mind” and “small mind” and how little mind is “compulsive, self-centered, and cares only about self.” When I get down I have to think in those terms and remind myself I’m operating from “small mind.” So many lessons here to learn…
As I progress with the study I am now on a self-injecting mission. Three times per week I must inject myself with the solution provided by the docs at MERSI. This is a new experience for me to be sure. The first time I was unable to do it and fortunately was with the study doc and his assistant who did it for me. But yesterday I was on my own and, let me tell you, it took a good 10 minutes to get the job done. Should any of you find yourselves in a similar situation, may I suggest deep breathing. However, I certainly hope such advice is unnecessary.
I still feel that this experience is surreal, like it’s happening but not really and that any day I’m going to “wake up” and all will be okay again. Is the lesson to not take things for granted and to be grateful for everything that IS good and functional? My friends who love “The Secret” would put forth a resounding “yes!” Maybe I’m a slow learner or just stuck in this steroid-inspired funk, but I’m more than a little pessimistic these days and that notion seems more than a tad simplistic. Do we ever really figure it all out for sure anyway? And isn’t that the ten million dollar question…