Monday, January 17, 2011

A Cloud to Every Silver Lining

Since about November, I've been trying to get a letter from a doctor confirming my legal blindness so I can get the benefits of the tax deduction. Last week, when I called to check on this, I had the assistant of my newest doctor tell me that there was always a possibility of my sight returning "if the diamox works." (I've been on this medication, diamox, for more than a year now, and my vision has not improved at all, though the condition that caused my sudden vision damage has seemingly been under control, possibly because of the diamox, for several months.) This was somewhat upsetting, because I had begun to make peace with the irreversibility of my vision loss, and because it went against everything I have been told by my other doctors. It's not that I don't hold out hope, or that I think that one defiant doctor can't get results, but I wasn't speaking to the doctor, but her assistant, as the doctor is out of the office for a couple of months (yeah, nice, that).

So I called the office of a different doctor--the one who performed my optic nerve sheath fenestration and who referred me to this new doctor. I asked if he could write the letter or if he thought there was a possibility of the vision returning so that such a letter would be unnecessary. He called me a few minutes ago to make sure that I understood "all the implications" of him writing this letter for me. (God bless these doctors who take the time to call and speak and explain!) He's preparing to write the letter declaring my legal blindness, but before he starts writing it, he wanted to me to understand that it will make it illegal for me to get behind the wheel of a car ever again, even with a driver's license. If my visual field were to ever somewhat be restroed and I wanted to no longer be declared legally blind, he said, it's very difficult to get this "stamp" removed from my record, because officials would say, "How can someone be blind, then not be blind anymore?" (Well, stranger things have happened...but we ARE talking about government workers offense to my government-employed friends, but you know who I'm talking about.) If I wanted such a thing removed from my record so I could drive again, I'd ahve to undergo all sorts of tests and such.

So I asked again the likelihood of my sight returning. He said he's had some patients who've been able to regain some of their visual field after being able to maintain a good intracranial pressure, but that's the exception. It's more usual to simply work on preserving what's left. (He has said before I'm one of the more extreme cases, because my vision deteriorated so rapidly, in just a couple of weeks, so we have to watch for things escalating quickly to total blindness within just a few days, whereas most people with IIH have months, even years.) So I explained that I've not driven since September or October 2009 because I don't dare to, so I think this is the best course of action for now. If, by some miracle, my vision improves so much that I can drive again, that's when I'll worry about the hassle of trying to get the "ruling" of legal blindness removed or reversed. (Besides, I figure if the vision is restored that much by medical breakthrough, there will be plenty of before-and-after tests and such in my medical record to present as evidence. And if it returns through nonmedical miracle, I'll have the Divine support I need to make it through all those tests and challenges--if restoring my vision is possible, a few tests should be nothing, especially with my hard-headedness.)

I felt a twinge of tears when I hung up the phone--a twinge at the finality, the official declaration of my disability. (I don't like that word. It really seems ugly to me. But I do have a disability. I'm not disabled, but I do have a disability that impairs my ability to live a life that our society deems normal.) I've had to move into acceptance slowly, and somewhat painfully. In November 2009, I still believed more vision would be restored as my eyes recovered from my optic nerve sheath fenestrations. In March 2010, I still hoped to drive and take the visual test to see if I could. In early summer 2010, I printed the form to complete for a disability hang-tag for special parking. In August 2010, I sent that form to my doctor for signature. In December 2010, I got the placard after holding on to the completed application for 3 1/2 months. Now, in January 2011, I'm accepting the official statement that I am legally blind.

I wonder if I'll ever be able to say or think "I am legally blind, and I will likely never drive again" without wanting to cry.

At least the good news is that I can get a nice deduction on my taxes.

* Stringham high: Being able to function almost "normally" in nearly every way with the vision I still have
* Stringham low: Missing the freedom of driving
* Stringham super-high: Kind, giving, helpful friends, family, and neighbors

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