For better or worse, I am an extremely blunt communicator. For those who are familiar with the DISC communication assessment, I am a casebook Dominant. Unnecessary chit chat, euphemisms, or soft tones all strike me as either insulting condescension or irritating wastes of my time. No matter what the news may be, it is what it is, and how it’s delivered won’t change that. So I prefer any information be given to me straight, no chaser.
That isn’t the way a lot of people process bad news, however. As a result, many of us have been taught to err on the side of compassionate communication. I was always encouraged to use the sandwich approach; say something positive initially, followed by the ‘challenging information’, immediately book-ended by another positive or encouraging comment.
I have no idea how that approach would be used to tell someone they are permanently legally blind. Both because I don’t have that level of imagination, and because Dr. Donald Stewart, the CEENTA Neuro-Ophthalmologist who broke the news to me, didn’t bother to try. He simply did his tests, looked into my eyes at my pale, withered optic nerves, and told me the bad news. Right in the chair; he didn’t make a big production of it by having me come to his office or to a conference room.
It was life-changing news, so of course I felt something. Up until then, no one had been willing to commit to a diagnosis on my condition. I’d been told from the day I woke up to my grey new world that it might be temporary. Everyone had stories about friends or relatives that had suffered eye damage but been restored to at least functional vision. Because – – – SCIENCE.
I was aware that these were all anecdotal examples, and even more aware that not one of my many doctors were willing to comment one way or the other. That’s not usually a good sign, and if you’d asked me I would have said I was prepared for the worst.
But deep down, I really believed that I would be fine. This was just a test to see if I still had the spirit to overcome adversity. Of course I wouldn’t lose my sight! Who did that? If I lost my eyesight, how would I be able to read? Or drive? Or work? The whole idea was too ridiculous to rate serious consideration.
Besides, I’d faced insurmountable obstacles before, and always found a way to climb over or under or around them. Statistically, the trajectory of my life was highly unlikely. One minute I was an indifferent if intelligent inner-city high school student who might not show up for afternoon classes if Bo and Hope had something more interesting to say on “Days of Our Lives”.
Then I conceived the daughter who would later help save my life. A life I’d managed to put together mainly to support her existence.
According to my NEO Big 5 profile, which is another personality assessment I’m certified to administer, I am not a person motivated by ambition or the desire to please or impress others. I’m solely motivated by the desire to accomplish tasks. Particularly tasks other people or general circumstances would suggest can’t be done.
So teen-aged motherhood worked for me. The early responsibility for a young child did more to push me to succeed than any of the advantages my poor parents worked hard to offer me. I attended parochial schools for most of my childhood, and all the praise, privileges and attention I received for getting good grades and high scores on standardized tests meant nothing to me. But I knew how smart I was, and the idea that I might not be able to offer my own child the modest advantages my parents had given me wasn’t something my ego was prepared to accept. If I was so smart, how could I let us go out like that? I had no real idea what I was going to do, but life was suddenly challenging me to do something.
Challenge accepted. I was in the second half of my senior year; by actually going to classes and completing a few assignments I managed to graduate with my class. Then I lugged my big belly down the street to jump on two buses and a train – each way every day – to attend Bryant & Stratton College, the best trade school I could find.
By the time my daughter was in day care, I’d obtained full-time employment, a little apartment and my own car. Then good old American cronyism kicked in. The father of my cousin’s best friend happened to be a Sr. Vice President of a major bank. He was impressed by my initiative, and used his influence to deliver me to an Administrative Assistant role I was in no way qualified for, one gilded stair case below the Executive Suite.
From there I basically Forrest Gump’d my way up the corporate ladder. Don’t get me wrong – I was a hard worker. What I lacked in formal education I gained through sheer curiosity and lack of inhibition. If I didn’t know something, I asked. Completely without forethought, I learned that powerful men often like it when seemingly well-connected young women ask them questions about their specialties and listen attentively. It wouldn’t shock me in the least to learn that some of my biggest mentors neither realize how much they helped me nor even remember my name.
Of course, I also acquired willing mentors along the way. With their assistance and my own perseverance, I managed to achieve my own Vice Presidency with a large financial institution, despite only holding that business school diploma. That was my last position in corporate America; a few years later, 2008 happened and that part of my life imploded.
The company I worked for was acquired by a larger bank, and many of the support positions like training were made redundant in the new organization. At the same time, I got caught up in the housing bubble, eventually losing my home when the ARM I’d foolishly gambled with shot up just as the value of the home itself plummeted.
Once again, I stumbled forward with no real plan. Acting as if all these life changing upsets were nothing more than the nasty, coconut-covered pieces in my own personal box of chocolates.
And once again, I managed to slip through multiple cracks yet somehow land in an even better place. Yes, I eventually had to short-sell my house. But not before purchasing a bigger townhouse in a much better neighborhood.
Sure, the townhouse needed a lot of work, but lucky, lucky me. Shortly after I took possession, my position at the bank ran its course. With plenty of time on my hands, along with retention bonus, severance pay and unemployment benefits, I didn’t spend a single day worrying about the fact that I was out of work during a recession. No, I spent that eighteen months blissfully pursuing the promised equity gained by renovating the worst house in the best neighborhood I could afford.
By the time I’d done as much to improve my house as I could for the time being, the industry was largely done with its own renovations. Instead of being forced to look for work, I was called on to help train the surviving employees on how to use the combined corporations’ new client management systems.
In that way, I stepped right into the world of contract training. For the next five years, I moved effortlessly from one merger training initiative to the next. The pay was great, the work engaging, and I had the opportunity to work and live in just about every major city in the country.
With all that upheaval behind me and still maintaining a comfortable life-style, I was feeling pretty bullet proof. The unexpected illnesses I had to deal with didn’t really change that. I wasn’t about to let a few tumors, two major operations in two years, and a little bout of fuzzy-sighted color blindness permanently interrupt my charmed life. Life had run me into brick walls before, but I’d survived, hadn’t I?
Big picture, things weren’t really that bad. The tumor was out and it was benign. I’d dodged radiation treatments. I’d taught myself to walk again over a long weekend, thwarting the doctor’s plan to send me to a rehabilitative facility. They hadn’t thought I’d be able to do that, but not only did I walk out of that hospital, I was soon back to bopping around my three level townhouse wearing my six inch heels.
All my adult life, I’d been certain my inability to perceive life’s obstructions allowed me to bypass them as if they weren’t there. A good attitude, hard work and being open to the possibilities were enough to fix anything.
But this time, Dr. Stewart wanted me to believe there were no exercises to learn. No treatment; no transplant; no hope to change my reality. Short of a real-life Dr. Frankenstein or a well-placed bite during the zombie apocalypse, there’s no way to regenerate atrophied optic nerves.
I took the news in, silently, which is my way. And will always appreciate the fact that it might be Dr. Stewart’s way too, because he was completely comfortable with my silence. He didn’t’ feel the need to interject a word of comfort or interrupt my train of thought until I indicated I was ready to hear more. Consequently, I didn’t feel the need to defend myself against unwanted stimuli and could process the news much more efficiently. I’ll never know if that was a deliberate choice on the doctor’s part, but I do know that in the face of potentially devastating news, it felt good to feel understood.
Once he saw that I’d absorbed the shock and was ready to deal, Dr. Stewart gave me a brief explanation of my condition. Basically, the optic nerve is located in the back of the eye. Its job is to transfer visual information from the retina to the vision centers of the brain via electrical impulses. It consists of over one million nerve fibers. As my tumor grew, it created pressure that enlarged my optic nerves and eventually began to cause these fibers to atrophy. Luckily, the pressure didn’t have time to kill all of them, which is why I retain a limited ability to process what I see and can still perceive the color blue. But I had lost a sufficient number of fibers that my sight will be forever compromised.
Dr. Stewart was straightforward, but not abrupt. He patiently answered all my questions, explaining that science hasn’t quite figured out how to regenerate dead nerves yet and there is no optic nerve transplant. There are, however, clinical trials being conducted using stem cell technology. As I rose to leave, he strongly suggested I get another opinion, and scheduled an appointment for me to visit Duke Eye Center.
I remember thanking Dr. Stewart politely and walking out of his office calmly. I’d heard everything he’d said, and understood most of it. But the last comments, about clinical trials and second opinions, drowned out the rest of what he’d told me.
By now, it’s probably obvious that my fictitious summer house is firmly planted on the banks of denial. If I don’t like my current reality, I feel I can envision a better one so hard and for so long that I make it manifest. Back when Oprah Winfrey was touting The Secret as the new big thing, I remember feeling as if everybody was just then catching up to my common sense approach to life. As I’ve already discussed, irrational optimism had always worked for me.
I’d always considered myself nothing but lucky to have been born with that point of view. Until an employment counselor my company sent me to when they laid me off pointed out the down side. It was possible that some of my more unlikely accomplishments were the result of fearless decision making. My unshakeable belief that if I go ahead and take that leap, the Universe will always catch me can lead to bold acts that create pathways where there seemingly are none.
But that same irrational faith can also make me unable to properly perceive actual negative events or take them seriously enough. Which can easily lead to reckless, irrational decisions that cause disastrous results. Like ignoring signs of serious illness until the tumor you refuse to acknowledge damn near pops your eyes out.
Ok, fine, point taken. But doesn’t everyone’s life philosophy have flaws? The way I deal with problems isn’t perfect, but when it works well, willful ignorance does lead to my bliss. At the very least, it allows me the space to ease into bad news without unnecessary drama or emotional upheaval; at best, skillfully dodging certain issues has allowed me to completely weather some storms altogether without ever being conscious the rain has begun to fall.
As I left Dr. Stewart’s office that day, a small, rational part of my mind worked to accept my prognosis. Busy with that, it was content to allow the more conscious part of me to feverishly chase down other options. Dr. Stewart was the only neuro-ophthalmologist available in Charlotte. I was scheduled to see another at Duke, but that appointment was four months away. In the meantime, what harm could it do to see the regular ophthalmologist who had an opening in the next few days?
That ophthalmologist looked at my optic nerves and said he saw a little more hope. According to him, while it was true that there was no way to regenerate dead nerves, optic nerve fibers went through a process before they were totally atrophied. He claimed that he detected some fibers that hadn’t completely given up yet. I was prescribed strong eye drops that were cleared to treat glaucoma, but that he swore had shown signs it might help repair optic nerve fibers as well.
Encouraged by this news, I also decided to give natural supplements a try. Despite never having had much confidence in vitamins and such, I found myself at Whole Foods purchasing things like ginko biloba, bilberry, garlic and certain kinds of eye-healthy foods and herbal teas. I still wasn’t convinced I was doing much more than creating expensive urine, but a shot in the dark is still a shot.
I became convinced that if the two doctors could see such different outcomes for my case, maybe there was other information out there that could help me. I began to do my own research on the internet. Because that’s where all the true answers reside.😑 Initially, I think I thought I might be able to find some obscure treatment or protocol that my doctors had missed or hadn’t thought to try. Doctors aren’t perfect, and new advances are made every day.
But in the course of looking for a way out of the dark (ok, twilight), I actually began finding things to make myself more comfortable in the world I now inhabit. Just the fact that I needed to use the internet pushed me to master Zoomtext technology, the magnifying application I use to see my computer screen. And all the searches on any and everything for the blind and visually impaired began to lead me to local and national resources to help people with visual disabilities live full, productive and independent lives.
IRL, the world kept turning. My ‘helpers’ finally had to return to their own lives, allowing me to reclaim my house. After months of living off already depleted savings, that well was truly dry, and the bills were piling up. The need to take care of my immediate financial situation trumped any desire to dwell on the future. And each time I managed to put out yet another fire, my confidence rose. I might not be able to clearly see what I was doing, but I still knew how to get things done.
After finding the resources available through the American Foundation for the Blind, I signed up with the NC DHHS: Services for the Blind, North Carolina’s social services agency to help blind and visually impaired people find work and live independently. State agencies such as this have counselors who conduct home visits to identify any ways in which they can help make a home as safe and efficient as possible. With their help, I discovered and obtained useful household gadgets and electronic equipment, which allowed me to take care of some basic life functions I’d been unable to address for myself since my sight had been compromised.
I somehow ended up hosting Thanksgiving dinner that first year after my surgery, and was very satisfied to verify that I could still cook everything but the greens, which I’ve never known how to do anyway. Of course, then I had to go back and retrain my family to understand that just because I could cook didn’t mean I was going to. I’d simply wanted to make sure that I could if the mood ever struck me.
Other firsts followed quickly. I had my first solo shopping trips, with varied results.
I met a guy I really thought I liked, proving that whatever I lost in sight failed to make me less shallow or a better judge of character. I survived a horrific bus ride from Cleveland to Charlotte, proving to myself beyond a shadow of a doubt that I can most definitely travel alone. And I was excited to learn that, if I sit close enough to the screen, I can actually see people in movies better than I can see them anywhere else.
So by the time I made it to Durham to keep my appointment with Duke, I had made my peace with my fate. I wasn’t expecting any kind of miraculous cure. Which was good, because I didn’t get one. There isn’t one, and may never be one in my lifetime. But the facts of my case have been added to the database of information being used to look for treatments and cures for eye ailments, and I do believe there will one day be a way to treat optic nerve damage.
But not for me. I’m not the guinea pig type, and that procedure would have to be discovered, tested, perfected and performed for about five years before I’d consent to try it. And I’m simply not young enough for all that to be practical.
Besides, I‘ve grown accustomed to my new view of the world. I wouldn’t have volunteered for this little adventure, but it hasn’t been all bad. There are things in this world that actually benefit from being viewed through a fuzzy, indistinct filter, and I am satisfied that I’m not stuck with regrets because I turned down opportunities to get out there and do and see as much as possible for as long as I could. I was lucky enough to see and visit many beautiful places before this happened, and I can still remember and dream in color.