If you are a follower of mine, you probably already know that 20 months ago after my miraculous liver transplant and two brain surgeries, I lost about half of my visual field out of both of my eyes. There is a fancy name for this symmetrical cut in the right hemisphere of both of my eyes, and it is called Homonymous Hemianopia (HH for short).
Upon being officially diagnosed with HH back in July of 2012, I soon realized I was going to have a difficult road ahead of me. Dr. Walsh, my neuro-ophthalmologist at Yale-New Haven Hospital, was one of the first people to tell me that I wasn’t going to be able to drive, and he said probably never again. I was initially having some issues with bumping into people and the occasional wall, table, and counter when I lost my visual field. I had quickly learned to adapt by turning my head, scanning more effectively, and by simply walking more carefully. I had assumed my vision would come back once some time passed after my surgeries and my medications were lowered, but my assumptions were apparently on the very optimistic side. I was unaware that patients diagnosed with HH hardly never see significant improvement in their visual field, and will most likely never have their vision fully restored.
The British Journal of Ophthalmology contains an article called, “Can Visual Function be Restored in Patients with Homonymous Hemianopia?” An excerpt from the article reads,
“Regarding field defects of vascular origin, the prognosis for spontaneous recovery is poor. Any recovery of a complete hemianopia occurs in the first 10 days after which further recovery is unlikely. Recovery of a partial defect is usually maximal within the first 48 hours. Less than 10% of patients recover their full field, and a proportion of these will, nevertheless, continue to complain about their visual function because of coexisting parietal lobe involvement. Up to 50% show spontaneous regression of varying degrees. The pattern of recovery largely depends on the extent of cerebral damage that is reversible and this, in turn, relies on the state of the collateral circulation. Further recovery is negligible after 10–12 weeks. The extent of visual recovery correlates negatively with age, a history of diabetes or hypertension, and the presence of cognitive, language, or memory impairment. Vision returns to the perimetrically blind field in definite temporal stages starting with the perception of light, motion, form, colour and, finally, stereognosis. Traumatic hemianopia behaves somewhat differently. Large areas of the visual field frequently recover, although the functions regained are unstable and often limited to the perception of light. The body of evidence would therefore suggest hemianopia is not always an absolute and permanent visual loss. This raises the question as to whether the natural course of a hemianopia can be advantageously manipulated by therapeutic intervention.”
[Pambakian, A L M & Kennard, C. (1997) Can Visual Function Be Restored in Homonymous Hemianopia Patients? British Journal of Ophthalmology, Vol. 81(4), 324-328, http://bjo.bmj.com/content/81/4/324.full%5D
The first three months passed after my diagnosis–no improvement; then six months, then a year, and still, nothing. I would be lying if I said I hadn’t become somewhat discouraged that my vision didn’t start coming back after about six months, I so desperately needed even the slightest sign to keep my hope afloat.
I was 27 years old at the time when I first told I would never be able to drive again. This was completely self-defeating to hear. I never realized how crucial driving had become to my everyday life. Once I was discharged from the hospital I was quick to learn that my independence and freedom relied heavily on getting around on my own. When I no longer had the luxury of hopping in my Kia Sportage and driving off, I searched for my next viable option.
What about public transportation? The public transportation offered in Danbury, CT isn’t accessible from where I live. I can’t walk to or from a bus safely in a decent amount of time from where I live either. But you’re on Disability, can’t Disability help you? The SweetHart bus–public transportation offered to disabled people, great! I was approved, and taken to one appointment. I tried to call again the following week for another appointment. I was calling nine days prior to the appointment inquiring a ride. I was told there were “no available drivers” and to call the next day to see if there was a cancellation. I called for the next four days, and still the SweetHart company had no openings to take me to my therapy appointment.
I called the SweetHart bus another time, on a Friday, to see if I could get a ride to the mall. The lady on the phone from the SweetHart company informed me, (with an unfriendly attitude) that last-minute rides are reserved for emergencies like if someone has a “toothache” and needs a ride to the doctor. She literally said “toothache.” I tried to tell her my situation that I am unable to drive and I wasn’t trying to take advantage of the service. I had been stuck at home for days with no way of leaving, I just wanted to get out of the house and I thought this service was to help people like me. This lady was reserving my requested ride for a possible “toothache” call, and wasn’t going to budge.
At that moment I decided that the SweetHart bus was not interested in helping me with my situation. I almost felt somewhat discriminated against for not being “disabled” enough. I had also been denied of services from the Bureau of Education and Services for the Blind (BESB) as they have decided I am essentially not blind enough according to their definition of “legally blind.” So what you’re saying is I’m not blind enough? I’m too blind to see anything directly to my right and I’m too blind to legally drive a car, yet I’m not blind enough to be helped by the Bureau of Education and Services for the Blind?? That doesn’t make a lot of sense to me.
Not being able to drive restricts freedom, independence, and quality of life. When you can’t drive and you are nowhere near decent public transportation, then what are you supposed to do? Find a way, because I’ll tell you now, being stuck in Danbury, CT without reliable transportation is not an ideal situation to be in.
Check-up after check-up, my visual field reports have remained “status quo”. Time and time again I have heard, “Your vision probably isn’t going to get better…You won’t be able to drive. Move to where there is good public transportation..I don’t know what to tell you.” At first I honestly let those negative comments get to me. It was a natural instinct for me to believe my doctor, I mean he’s the one who has gone to medical school and all, not me. I immediately became discouraged.
My aunt attempted to bring up my spirits by reminding me that as much as doctors and statistics may be something you trust, it doesn’t necessarily mean they are always 100% right. If that were the case I should have been easily dead 20 months ago. With an infection that has only allowed less than five immunosuppressant survivors EVER, it is quite the miracle that I am alive and well enough to be typing this. The fact of the matter is I am alive, not only defying the odds themselves, but I am doing far more incredible than anyone could have every projected. I am living proof that the odds were not entirely impossible of overcoming, so doesn’t that mean there are other odds out there that are ready for me to defy? You’re damn right there is.
If you remember correctly, I told you my doc said if my vision didn’t come back in the first three-six months, that it most likely will never come back, right? Well part of me just can’t seem to accept that. I’m back to optimal physical, mental, and emotional health, not to mention I am only 28 years old. I am far more flexible and adaptable than say a 70-year-old with the same visual impairment as me. I am much stronger, I am far less medicated than I was even a year ago, and you’re still going to tell me you don’t think I am ever going to be able to drive again?! Don’t you agree that is a rather closed-minded way of thinking, especially with all of the technological developments over the past decade? Soon cars will driving themselves for crying out loud! If that is what you truly believe–that I will never be operating a motor vehicle from the driver’s position again, legally–then I regret to inform you that you are wrong! I may have had two brain surgeries but I am not soft, I still have one of the hardest heads you’ll come to find and being told “no” doesn’t come easy to me!
Yes, I have come across a couple of road blocks. That doesn’t mean give up and turn around, it means find another way to get around the damn obstacle! I don’t care if it is under, over, to the side, or through it, I will get by this road block! It may not be tomorrow, this month, or this year, but it will happen, believe me.
You may or may not be doubting me, but you’re probably still wondering how are you going to do that Mo? While I would love to be able to give you a detailed and mistake-free strategy of how I plan to accomplish this, I don’t have one. What I do have are some goals that I am currently in the midst of pursuing.
Since this past November (2013) I started going to visual therapy in Southport, CT at Eye Care Associates. I heard about Dr. Schulman in Southport and visual therapy from one of my old college roommates from Furman, who now happens to be an optometrist. Once a week, on Mondays at 11:00 am, I have visual therapy with my visual therapist, April.
My sessions with April started small with April giving me an eye patch to wear, and her moving a pencil around in air as I follow it with my eyes. Each week I have had to do more and add-on to the previous week. Now I am up to wearing 3D glasses, prism flippers, all while walking back-and-forth trying to maintain my balance across a wooden balance beam while reading numbers and letters on the wall.
I often look silly and was at times skeptical about the visual exercises I had to perform thinking to myself, “This is stupid. How is this going to make me see more? I’m not wasting my time….” I was very close to calling it quits, deciding that I had a better way to spend anymore of the very little money I have. I rationalized with myself, weighed the pros and cons of visual therapy, and decided to give myself a little more time in visual therapy, at least until I saw my progress report.
Last week I had my most recent visual field exam taken by my neuro-ophthalmologist at Yale. Once again, Dr. Walsh prefaced the appointment by telling me that my previous appointments have shown I have Homonymous Hemianopia. He is very much aware of my desire to be able to drive again, but he never hesitates to inform me that he still doesn’t think it will ever be safe to drive, therefore if I do ever drive it will never be under his authorization. Not exactly what I want to hear, especially since I had yet to take my visual field exam that day. Alright, let’s take the test already, before you start discouraging me even more than you already have Mr. Scrooge.
Finally, I get directed to the room where my visual field is going to be taken. I was handed my “clicker” and had to click every time I saw a light, dull or bright, shine anywhere on the screen. I finished, and I asked the lady who administered the exam if she could print out my results for me. Even though she seemed extremely shorthanded and busy, she was still very kind to me, agreed, and handed me my print out upon completion of my exam. The print out showed my previous visual field exam results from July 2013, and the one I just took, six months later, January 23, 2014.
I looked at the results and my mouth quickly dropped to the ground. After what seemed like several moments of my jaw hanging from my face, I was able to reel it in, produce a smile and excitedly yell while simultaneously asking, “It got better didn’t it?!?” The lady who administered the visual field said, “Looks like it, good luck with your driving,” in a way that she too hopes I will be able to drive again one day.
At this point my excitement can hardly be contained! I am so thrilled just that my vision got a tad, somewhat, any bit better at all! I know it is not enough to drive, but considering the fact that there is improvement, to me, is a sign that I might have one more miracle left in me! I have been told by various people and sources that if visual field in HH patients doesn’t return in the first three-six months, it most likely will not. For my visual field to have shown no improvement over my past four visits, but then suddenly there is unexpected improvement after the fourth follow-up, that is a major thing!
The only thing different I have been doing since my previous visual field exam six months ago, is that I started going to visual therapy once a week and doing daily practice visual therapy homework exercises. That has apparently been the difference, despite being told it wouldn’t make a difference, and that it wasn’t worth my time or money.
So I bet you guessed it, you will find my ass at visual therapy in Southport, CT at Eye Care Associates every Monday at 11 until they kick me out! I will also be doing my practice exercises throughout the week, because this girl has more work to do! I can’t, I can, I will drive again, just watch me!
“Do not go where the path may lead, go instead where there is no path and leave a trail.” ~Ralph Waldo Emerson, American Poet, Champion of Individualism, leader of Transcendentalism movement.