#LegallyBlindNotBlonde

I had to make one of the toughest decisions of my life this year. I could put a third hole in my head, or I could put my Big Girl Panties on and carry on…with some modifications.

On January 13, my life changed forever. I had lost vision, and I  was rushed to the hospital. My condition is called a pseudotumor, or more simply, water on the brain. I had three surgeries in three months, and I was labeled “legally blind.”

Maybe it was just the word “blind.” It seemed so final to me. Everything in my world relied on sight. Watching my Goddaughter grow up. Seeing Broadway shows. Exploring new places and my passion for travel. And my devotion to my writing career.

Over the last few weeks, I’ve discovered that I don’t have to miss out on a single thing.

Being legally blind doesn’t mean that you can’t see anything. You see in shadows in dim light. The bright sunshine, though, is too much for me.

But I know now that I can still see my little sweetie’s face when she gets really close to tell me she loves me or to give me a kiss. I can still thoroughly enjoy a Broadway musical, and I can hear little things that I missed before — like the subtle nuances of the triangle player in the orchestra. I can certainly still travel.

And with the help of coke bottle glasses and software for the vision impaired, I can still write the stories floating in my head and burning in my heart.

My low-vision specialist even has hopes that we can work on helping me to see better at the theater.

And I’m proud of myself. Throughout my life, everyone has always told me two things about my personality — you’re funny…and you’re strong. Admittedly, I let myself wallow for a couple of weeks. But then I started to realize that life doesn’t end just because I can’t see so well.

After my third surgery — I had a shunt placed in my head to drain the water from my brain — I realized that I was still funny and stronger than ever. I certainly don’t want my Goddaughter to look back and think that I wimped out. I want her to see that you can conquer the the curves on this road called life.

Right now, my biggest gripe with being blind is stepping in cat vomit.

As for those holes in my head, I’ll keep them at two. However, I still maintain that neurosurgeons are the new dentists. I mean, it’s no secret I like a Dominant man, but pure sadism isn’t my thing. I make that accusation with the authority of having dealt with two neurosurgery teams — both of which left me muttering, “Sorry about your penis…”

Right now, it’s business as usual as I learn how to be blind. I have to be trained to use a white cane. I guess they want to teach me how to avoid hitting people on the subway. I’ve already decided that manspreaders at rush hour don’t apply to that rule.

And I’m still writing. BLEMISHED is almost in its final form. You’ll see it in September. I just have to make up my mind whether I want to do an erotic paranormal or something a little lighter to take a break from the weight of this year so far. I’ve also plotted a series of standalones that will likely start next year. When I come up for air.

And I’m planning a trip to Scotland to see a dear friend. We can still have fun and enjoy our time together. She’s the same person she was before I went blind, and so am I.

Maybe I’ll even have some Scotch and find out what’s really under those kilts! You know…get a little carried away with the white cane, and…OOPS!

Am I happy about going blind? Oh, hell to the no. Would I change it if I could? Of course, I would. But I’m not going to sit around and cry about something that can’t be changed. There’s still a big world out there that I haven’t experienced to its full extent yet.

Now, if I could just get the cat to stop hurling all over the place…

 

On Being Blind

fall-risk

It’s been a shitty last couple of weeks to say the least.

I’ve been in and out of the hospital three times. I had a spinal tap and two eye surgeries — all of this for a gal in her mid-forties who never spent a night in the hospital in her life. I’ve dealt with neurologists and ophthalmologists. I’ve had some pretty crappy food, and I’ve refused some pretty crappy food, too. I’ve been trying to keep up with my friends, but sometimes I forget what I’ve told to whom…and sometimes, I get so tired talking about it taht it’s just easier not to make that call.

I found out on all days – Friday, January 13, 2017 – that I was going blind.

About a week before that, I saw some neon flashes in my eyes. I just ignored them. Thought they were floaters. Hey, I’m in my forties. Who am I kidding at this point. Shit happens.But as the week went on, the world around me became foggy, and by Friday, I was finally scared enough to go to the eye doctor, who sent me immediately to the hospital.

I was scared shitless.

I thought it was just an eye problem, but when neurology was brought in, I started to worry. I had water on my brain, pressing against my optic nerve. Every day, while neurology fought ophthalmology, I was losing sight. I went home from the hospital, only to go back to the ophthalmology surgeon two days later.

She admitted me again. My vision was worsening. I called my best friend, and she came running before I had a spinal tap that afternoon.

Just to divert for a minute, I don’t know what I would have done that day without my best friend. She did exactly what I needed her to do – make me laugh. They tagged me with a black and yellow bracelet that looked like caution tape. It read: FALL RISK. I could fall fully sighted, so that was funny, but she almost made me fall out of bed when she said, “Friendship bracelets!”

She pulled up James Norton pictures for me to look at, and we talked about Taye Diggs’ thighs. Have you ever seen that man’s thighs? Oh, take a look and treat yourself. We also discussed Beaches, but not in the way other best friends talk about that movie. We were laughing over it, giggling as we told each other that we were the wind beneath each other’s wings. And for some reason, I could only remember that Bette Midler’s character was named Cee Cee. We’re both kinda like Cee Cee, though, even though she’s a mom, and I’m not. So we’ll just stick with sarcasm.

However, the spinal tap wasn’t the resolution. It wasn’t even a band aid for the problem. The water was still there, pressing against my optic nerve. And neurology and ophthalmology continued to argue over my treatment.

Three options were available: Drill a hole in my head and run a drainage tube to my stomach. Some sort of drainage system at the bottom of my spine. Both permanent options. And eye surgery.

With all of that information coming at me, I didn’t know what to do but call my Fairy Godfather. He always had the answers. And he can keep calm in the eye of a storm.

He spoke to my eye surgeon, and he agreed – eye surgery was the best option. I had the first one done – the bad eye – as an emergency case on a Sunday morning. My surgeon fought so hard for me. She knew that’s what I wanted. And before they wheeled me back, I thanked her for that fight.

The surgery itself went well, but I already had permanent damage from the water. They literally went in and hole punched my optic nerve to drain the water. I got to go home for one night, and when I went back for a follow-up, they admitted me again because she was worried I’d lose sight in my good eye.

I had the second surgery, and again, it went well. However, it hurt to hear the words: Legally Blind.

While I was in the hospital, I realized how much of my life is visual. Broadway shows. Writing. Watching my precious goddaughter grow up and grow into my best friend. Following the cat’s crazy antics. Staring like a twelve-year-old at John Taylor every time I see Duran Duran.

Hell, I have tickets to see Patti LuPone in War Paint  next month! It’s the show of the season, and Fairy Godfather and I have been waiting a year…

And let’s not forget my books. That was the first thing I thought when I heard the word “BLIND.” I just kept thinking about a life without writing. I’ve never been without a notebook or a laptop. I’ve been writing since I was a child. It’s a part of me just like my hands and feet. Without writing, I don’t know what I would do, honestly.

When I had to pull BLEMISHED, it killed me. There was no way I could deliver the book by March with the way I’m feeling now. But I felt like a huge part of my life just broke off and floated away from me into the ocean, never to be seen again. My heart was truly broken.

Luckily, legally blind doesn’t mean that you can’t see anything. You can. And there’s also software available to help you see the computer. I’m working on getting used to mine now.

My good eye is gaining sight by the week. My bad eye is stable.They say it will be months before we really know how much vision I’ve lost in both eyes. For now, I’m figuring out how to be blind.

Yeah, I have my days when I’m frustrated. I’m also trying to be hopeful.Also trying to keep my sense of humor up. For example, on Sunday, Fairy Godfather calls me. he couldn’t find the channel for the Superbowl for the halftime show. Both of us only wanted to watch for Gaga. I promptly shouted, “Come on! I’m blind, and I found the damn thing!”

I’m taking steps to help myself make the most out of this that I can. And I’m actually hopeful that we’ll save my right eye.

One good eye is all I need to keep an eye on my godbaby and cat…and John Taylor. And it’s all I need to do what I love most – write.