This is a long one - catharsis.
I have disabilities that effect me head to toe but are not typically noticed because I don’t allow them to be … I like stealth.
I’ve been told my disability looks invisible. I think a lot of people look at me - my non-VA primary doctor and others especially - and they never see visibly what I have brewing inside neurologically from head to toe. I like it stealth except when I get an infection and a spiral of MS symptoms exacerbate from said infection - queue the token respiratory infection which just seem to love me. The thought of catching something and entering that spiral sometimes governs my desire to want to interact with the world - I find myself more reclusive just to avoid lots of people. I’m ok with that. It’s pretty much who I’ve always been. An introvert with chronic illness = even more introversion. I have to continually learn and relearn how to be patient with myself and how to be comfortable interacting with others day to day. Some days are perfect, some are not. That happens to everyone. It is absolutely one of life’s hardest lessons - especially with a disease process that can effect mood. While it doesn’t take my optimism away … it tests it.
It’s funny, a friend recently expressed to me “MS IS A BASTARD” and to that I add, so is TBI (Traumatic Brain Injury). They are both bastards. But in the bastardness came the gift of art. So my optimism paid off and I was able to discover the gift that art has given and the abilities that have come to light. That’s progress and a wonderful gift to me. Art provides distraction and companionship when talking with people just won’t suffice.
Today I went for a measurement related to longstanding diplopia (double vision) and went to a special practitioner in my Neuro-opthalmologist’s office in Sarasota, FL. This Allied Health professional was called an “Orthoptist”. In my almost 30 years of seeing neuro-opthalmologists, I have NEVER heard of this practitioner or measurement (where have you been these past 30 years, Rikki?). After multiple visits because of running into stuff with my elbows and decreased acuity and an apparent increase in double vision, the orthoptist was able to give me some relief by tricking my brain with the addition of a Fresnel prism to my left lens (this is a crutch to trick my brain and it is working). The results after almost a day are miraculous to me! But someone asked me this question and I ask myself the same thing. How will it effect my art? I don’t know! I really have no idea. I DO know that I seem to have an increase in hand-eye coordination! I can see a straight line for what it is and my hand can follow a straight line with the introduction of a prism. The lines I draw pencil to paper can be straight now and I can perceive them that way too. Case in point, I actually folded some laundry and got it right the first time - almost military precision. It sounds silly - but that is huge. I have hated folding laundry for years because I don’t see the folds and corners correctly. My military self needs those straight lines and precision, my eyes weren’t seeing them that way and would never comply. A series of fold, unfold, refold, unfold and then passing it along to my wife for precision. Ugghh. But that is a huge element and it could definitely effect my art!!!
Since 2015, my vision has continued to decline at a more rapid pace than it ever has, I’ll address these next sentences like I am talking directly AT a couple things (it’s weird, but it’s therapeutic for me). Here goes in my sarcastic voice:
“Thank you Keratoconus and thank YOU TOO my 4th (trochlear) cranial nerve for screwing up my eyes. Also, thank you again, “Mr. Motorcycle Helmet”, for saving my head when I was 18. You were the only thing between me and the pavement. The people who recovered you never allowed me to see the damage you sustained. They told me it was pretty bad and described it to me - I don’t remember much at all. I don’t remember much of anything from 9 months of hospital and rehab. When I hit my 30’s and in full stride of my career - the BASTARD decided to peek in, enter and make a home.” I’m venting … it’s good to vent sometimes. Life is a confluence of MS and TBI for me - sometimes it is hard to distinguish them.
Well, here I am, vision corrected in a way that it has never been for 30 years. It isn’t crystal clear by any means - in fact the prism makes the left eye cloudy and blurry BUT, I am not seeing double. After so much “hostpitaling” over the past year and a half, I am on a new journey to be healthier and make conscious heaklthy choices. There are things within my control and things out of my control. I’ll work with the things I can change.
I am thankful for a gifted and perceptive Neuro-Opthalmologist who had the perception - Dr. Marc Levy, Sarasota Retina Institute (and he is the staff eye doc for the Tampa Bay Rays!!!) - I’m planning to deliver a little print to his office as a “thank you”