In June, 2014, I woke up after experiencing a three-day psychotic break to a whole new world. While I’d been out of my mind, surgeons had gone into it and removed a massive tumor I had no idea was there. To the good, I was told I could have been paralyzed, stroked out, or outright died because the tumor had grown so large it had literally knocked my brain around a little.
The doctors, unsure of what condition I’d be in when I woke up, had prepared my family for the worst. So they were amazed that when the time came, I was able to walk out of there and return home, perfectly able to walk, think, and take care of myself.
There were some changes and challenges, of course. For one thing, they’d shaved half my head, which I still feel some kind of way about. The fact that I’d worn micro-braids for so long nobody had any real idea what my natural hair looked like was beside the point.
I knew my healthy head of hair was long and thick and lovely, and I hated the idea that my new haircut left half my head looking like I’d gotten a Brazilian wax from a seriously myopic aesthetician. Maybe that’s superficial and silly, but it’s real. Shallow people have feelings too, and the idea of losing all my hair left me shook.
Continue reading “Welcome to my world…”
I left my sight behind at 55 MPH.
One minute I was driving along, chasing down a potential training contract. The next – nothing. Lights out. All of a sudden, I couldn’t see a thing.
Okay, that’s a bit dramatic. Despite what a lot of people envision when they hear me say I’m blind, I don’t live in total darkness. Blind is simply easier to say. Like many ‘blind’ people, I’m actually visually impaired (VI). My light perception is a little diminished, but I can still tell light from dark, see the color blue, and large objects within about a three foot range of vision are fuzzy but mostly recognizable.
But my range of vision is severely compromised. So I couldn’t see a thing beyond the hood of my Mazda 626 except hazy, rapidly moving shapes. And even the familiar things I did recognize inside the car were hella blurry.
So it was a real problem. I mean think about it. What would you do if you found yourself on a fairly busy road, going about ten miles over the speed limit, and all of a sudden you couldn’t see where you were going? Pull over to the side? Stop the car? Try to get help?
Continue reading “DWB – Driving While Blind”
My first misadventure as a visually impaired person happened about three months after my surgery. I had to get myself back to Charlotte from Cleveland, and I needed to do it on the cheap.
As this link demonstrates, there are several options available specifically for visually impaired people who want to travel safely. But the mainstream discount bus service I chose had no such concerns. I was picked up in the middle of the night at an otherwise closed terminal in downtown Cleveland and dropped off for a two-hour layover on a sketchy corner in a rundown Cincinnati neighborhood. There was no shelter, and all the stores surrounding us were closed.
I was still taking anti-seizure medication and my phone was nearly dead. The ticket to board the next bus was on the phone, and the medication was only to be taken with food. So it felt vitally important that I find somewhere to recharge.
A passerby, seeing the group of us waiting for the next bus, told us that there was a coffee shop about three blocks straight ahead and five blocks to the right. Despite many people’s gripes about being left on that corner with no way to get out of the sun or use the restroom, nobody wanted to go find it. I suppose my fellow passengers clearly saw our surroundings and decided to act like they had common sense. I couldn’t and don’t, so I set off by myself, dragging a waist-high suitcase noisily behind me.
Continue reading “Blind Girl Packing”
When I first accepted my limited vision, I’d still been certain I could find work in my field. I was a seasoned training professional with over twenty years’ experience in all aspects of the profession. Okay, I could see that a system’s trainer who could no longer see a computer screen probably wouldn’t be an asset. But I’d only been doing that for five years. The majority of my career had been spent developing curricula, writing course content and consulting with division managers. I’d lost some of my sight, but none of my mind. As long as I could still use a computer, I could certainly still do my job.
In preparation, I took every rehabilitative course I could find to learn to use a computer with magnification software. (Click here if you would like to find similar courses.)
I also had to learn how to trust my other senses so that I wasn’t intimidated about being in new environments I couldn’t see very well. I even secured the devices I’d need in order to be effective so I wouldn’t present an undue burden on potential employers. Then I applied to all the contracting companies I’d used successfully in the past, and honestly expected to be able to return to work.
That didn’t happen. Continue reading “Trying to Transition from Tax Recipient to Tax Payer”
A quick Google search reveals multiple entries about breakthroughs in optic nerve regeneration. There have been gains made in drug treatments as well as clinical trials using stem cells. I have no doubt whatsoever that there will eventually be a treatment that will restore every bit of function my atrophied optic nerves have lost.
But I don’t really see it happening in my lifetime. I’m being realistic, not pessimistic. All of these treatments are in the early stages of development, and while I did find this article about a Baltimore woman who submitted to a controversial stem cell treatment and regained some of her sight, I’m not that adventurous. I didn’t even get a smart phone until 2011. Since I’m clearly not what they call an early adopter, I don’t see myself being first in line to have people experiment with what little eyesight I have left. I’m going to need them to fully develop, test, and perfect these ideas before I climb up on the table.
In the meantime, however, I am more than happy to take advantage of all the technology and devices found here that allow me to live as fully and independently as possible with my current range of vision. Losing my independence is my greatest fear; I don’t want to just exist in a world where I’m unable to do any of the things that make life bearable for me. While it may take years for the new self-driving technology to put me back in the driver’s seat, I have at least found programs and applications like the five listed here that gave back my ability to process the written word. Which was HUGE for me.
Continue reading “Reading is Fundamental”
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. Continue reading “Learning 2 C”
The brain tumor I experienced is called Meningioma. I just had to Google that – I think the fact that I can’t properly pronounce the word keeps me from remembering what it is.
What I do remember is how the oncologist explained my condition. Meningiomas account for a little over 30% of tumors overall. They are usually benign, and sufferers are often unaware the tumors are there. This seems to be hard for people to understand about the condition. Yes there were symptoms, but not like you’d imagine when you hear the term BRAIN TUMOR. Most people don’t know they have one because there are often no detectable symptoms until the mass grows large enough to affect other parts of the brain. Sometimes doctors don’t recommend removing a meningioma that isn’t causing any problems because it often grows slowly and may never cause any noticeable affects. My doctors have no idea how long I might have had mine, but they estimated about ten years based solely on its size.
Continue reading “Reclaiming My Time after Losing My Mind”
Ever since my brain tumor was finally diagnosed, I’ve been told I was something of a medical miracle. Apparently, a tumor that size should have knocked me out for the count a lot sooner than it did. At the very least, I shouldn’t have been able to prance around in stilettos and constantly master the new technology necessary to do my job, let alone fly around the country as I’d been doing every week for five years.
More than three years later, I still have no idea how to feel about that. People always ask me how I could have not known that something was wrong. To be clear, I’ve never said I didn’t know something was wrong. I remember being super tired a lot, but I was living in North Carolina and working a project in Beverly Hills. I chalked the fatigue up to the stress of being bi-coastal, and the idea that I could honestly make that claim was so thrilling to me at the time that a little tiredness didn’t seem like such a big price to pay.
Of course, brain tumors don’t exactly tickle, but it wasn’t as painful as you might imagine.
Continue reading “2 Broke 2 B Sick?”