You ever meet someone and you experience that rare instant connection which makes you feel like you’ve known them for years, instead of the brief time it took to know their name, where they are from, and their family in an informal setting?
Well, I met an incredible young lady, who after our first week together at a two-week residency course at Loyola University, I had no idea she had a “hidden disability”, guess that’s why they call it that.
But, seriously meeting Tina Jones from Baltimore, MD was an eye-opener for me, she literally made me see life for REAL.
You have to read her extraordinary blog post here to understand, please take a moment to kick back and check out Tina Jones’s “Blind Ambition”
Please offer your thoughts or experiences with what has been shared.
Angela from www.weraccessbile.com
Hi! I’m Tina Jones I’m 41 and live in Columbia, Md. I live a regular life, I work, attend graduate school and hang out with friends and family. I’m obsessed with my pets (two long haired Persian cats) and my niece and nephews. I love to cook and I couldn’t enjoy wine more, if I lived on a vineyard. I can’t live without pop culture and politics and one day I will eat, drink and shop my way through Paris. Like I said, a regular life, normal interests and ambitions. Except, with one minor difference…I do it with only 30-to 40% of my vision. I called this piece “Blind Ambition” because that is exactly what I have, in more ways than one.
See, I have what is called Retinitis Pigmentosa. It a long name for having tunnel vision and complete nighttime blindness. Eventually, it will steal all of my vision. I am fortunate, at this point, I do not require a white cane or Seeing Eye dog. Though I am grateful those things as well as low vison specialist exist, as I am sure I will need them in the future. Here is the technical definition: Retinitis pigmentosa (RP) is a group of rare, genetic disorders that involve a breakdown and loss of cells in the retina—which is the light sensitive tissue that lines the back of the eye. Common symptoms include difficulty seeing at night and a loss of side (peripheral) and total vision. What this fancy definition does not tell you, however, is the frustrating, dignity robbing and yes, at times, funny stories that come with this wonderful disease. I’ll tell a funny story to keep things light. Having tunnel vision messes with your depth perception, which in turn makes me very, very susceptible to motion sickness. I’m not sure why I didn’t take this in to account when the question “Hey, want to go parasailing” was asked to me a few summers ago. I get up on the parachute and for a second I think “I got this” …. Then I look down and that was all she wrote. I got very dizzy and lightheaded and the next thing I know, I tossed my cookies all while I’m hanging in the air and unfortunately, all over those in the boat I was attached to.
Ok, so maybe that story fell more under the “dignity robbing” section as opposed to funny 🙂 but it is all about learning to take things in stride, and knowing my boundaries. Since the onset of this condition did not begin until my 20’s, adjusting and learning my boundaries was an uphill battle, to say the least. I had to learn that I couldn’t do things that I used to like to do, like hit tennis balls around with my neighbors, because now, the balls fly in and out of my line of vision and I miss the ball completely. Going to the movies is another thing that is harder because now, since my vison has deteriorated, I can’t take in all of the screen and the darkness is paralyzing. This was a hard pill to swallow, saying good bye to movies in theaters, my grandfather owned a movie theater growing up and some of my favorite memories were in a movie theater. I can’t lie and say it hasn’t sucked losing things like those little luxuries of playing tennis or going to the movies, but the biggest hurdle to get over has been the loss of driving.
When we turn 16 and get a license and a car it is TOTAL FREEDOM, and when you give that up at 38, It takes a second to get your baring’s and still feel like an adult. Everywhere I go and anything I do I have to rely on others. This has taken the control freak in me to the tenth degree. It’s not about “getting around” as I am beyond fortunate to have a family that is a support system someone in my situation could only dream about. It’s about not feeling like I can react in an emergency, the “what-ifs” drive me crazy daily. What if there is an issue with one of my parents, niece or nephew and I cannot get to them quickly because I have to wait on an Uber. Or what if there is an emergency with one of my pets and I am who they are relying on to help get them care. It makes you feel like less of an adult, when you feel like you can’t take care of yourself and those you love.
Well done RP, you almost got the best of me, what with limiting some of my favorite activities, making me feel insecure and taking away my ability to drive. I bet you think you have won …you nasty little disease, you. THINK AGAIN!!! I’ve got ambition, BLIND AMBITION!
Every time this condition tries to dictate how I live my life I in turn, get more ambitious, and turn lemons into lemonade. When I was no longer able to live in the city because walking alone was getting too dangerous with my vision, I decided to move back closer to my family. What a blessing this was! I am closer to my parents so they are able to be around more and act not only as a support system but a source of happiness and contentment. I am around my niece and nephews more and I am actually able to walk more places and get Uber’s quicker, so my freedom got a huge boost!
I was not going to let this dictated move box me in and make me more insecure. I was determined to make this a positive situation. I still felt like I was missing something, being in the city I always felt like I was a part of something bigger then myself and since graduating under grad and moving out of Baltimore, I was feeling a bit lost. The things that many do to get involved in their community, I find hard to do for a few reasons. 1) I get nervous about new locations, what with the chance of falling down stairs or being clueless as to where I am going in dimly lit rooms 2) Having these insecurities, does tend to make you more reserved 3) Many activities are after work and in the evening…and that’s when I turn back into a pumpkin! Lol.
So again, I was faced with adversity and saw it as a challenge. I decided that yes, being a part of something was key and so I decided I wanted to be a part of a community I had wanted to be a part of for 20 years, Loyola University. I applied and got in to a graduate program and instantly felt at home. I met like minded people with similar goals and interests, professors that challenged me and an environment in which I could thrive. The thing I liked best about this program what that most was done online which meant that I, for once, had no restrictions, I was just like every other student. I didn’t have to drive to class, or worry about dimly lit classrooms. I was on the same level as everyone else. This was a huge confidence booster.
So, like Jay-z says some things are a “gift and a curse.”
Yes, it is not ideal that at such a young age I am losing my vision. But in some ways, it is what keeps me going. Knowing that I have a limited amount of time to have a career and perform in that career the way I want to, makes me work for this degree even harder. The fact that I want to see Paris before I lose any more of my vision makes me want to work hard at my job, save money and plan that trip tomorrow. This condition forces me to take everything in around me: faces of those I love, sunsets, snowfalls, everything I am going to always want to remember. It pushes me to be in the moment so that I can bank the sights I am seeing and hold on to the feelings that they invoke. If I did not have this condition to deal with who knows how many things I would look at but not really see. While I cannot sugar coat this and say that the bad parts of this disease do not completely suck, I will say that the side effects and self-awareness of dealing with this disease have certainly been blessings.
I have blind ambition because I don’t know what the next step will be and how long my vision will last. I am just plowing through, blindly, into the future, knowing that I have given myself the tools I need to survive and that I have surrounded myself with people who share in my ambitions. I also have blind ambition because LITERALLY the fact that I am going blind makes me more ambitious. I feel like since I am losing something, I must gain something.
So, every time I feel like this condition has forced me to lose something, I fight even harder for something I want.