Welcome to my world…

 

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.

Maybe as consolation for that, I lost two dress sizes in three weeks.  Without dieting or doing a lick of exercise, I finally regained the body I’d been trying to get back for years. Don’t get me wrong – despite how it worked out for me and the high hopes expressed here from Nightline, I don’t recommend brain surgery as a viable weight loss option. But I was assured that recovering from brain surgery was sufficiently traumatic that it was crucial I take in enough calories to help my body heal. My body required so much energy that I was able to watch it shrink down to size while being force fed pastas, fried foods and desserts.

And I am permanently legally blind. Within the space of three days, I went from being a person who never even needed glasses to one who will forever view the world through an indistinct version of this filter.

colour-splash-color-pop

I can no longer drive a car, see any color but blue, or read written documents without serious magnification devices. Nor can I clearly see people’s faces without getting much closer than is socially acceptable.

I take most things in stride, but I admit I needed to take a pause before I could accept all that. But at the end of the day, what choice did I have?  It is what it is and it could have been worse. Yes, the tumor snuck up on me and did some damage, but it’s gone now and I’m still here. So the way I see it, I won.

But if I was going to stick around, I intended to live not just survive. Since I could no longer do the job I loved and had worked in for over 20 years, I had to rebuild my life. Deciding to make the best of it, I was inspired to go back to a lifelong dream of becoming a published writer.

A lot of people asked me if I was going to try to write an inspirational tale of what happened to me – the brain tumor that almost killed me, losing my sight and livelihood overnight, etc.  I know what they are looking for.  I read Maya Angelou’s “I Know Why the Caged Bird Sings” as a girl, and can honestly say her life story has been an inspiration to me ever since.

But I’m way too sarcastic and standoffish to be an inspirational person.  I can sum up what I learned from that little experience in three points:

  1. If you are having bad headaches, facial paralysis, vertigo, frequent nausea, overwhelming fatigue and blurry vision
  2. If people in your life, friends, family and casual acquaintances alike keep telling you that you don’t look right
  3. If you experience episodes where your vision fades out on you while shopping or driving a car

GO TO THE DOCTOR.  Surprisingly, Facebook friends are not reliable diagnosticians, so polling them for their opinions about what is wrong with you may not lead to a cure.

That being said, I have decided to share my story through this blog. People who know me may well be shocked by some of the things I intend to put out there. I’m normally a very private person, not prone to inviting people into my business nor encouraging them to tell me theirs. But if I’m going to do this, I don’t intend to sugarcoat my opinions or bite my tongue. There’s no point in taking your place on the stage if you are terrified of the spotlight.

I am working very hard to make sure I capture moments from my own reality that might prove interesting and useful to whomsoever takes the time to read this. Because now that I can no longer do certain things for myself – like drive, read labels, or be certain my frickin’ shirt matches my pants…

…I’ve had to interact with other people much more often than ever before. I don’t always like it, to be honest, but I have learned to let my guard down a bit. And met many wonderful, sincere people who have been willing to offer me a helping hand with no strings attached.

It’s so big a cliché I can hardly stand to admit it, but I’ve been inspired to be a better person because of what happened to me. If anything I’ve learned or experienced can help anyone else, then I’d like to know I did that.

In this blog, you can expect to hear ramblings from a single, sarcastic, middle-aged black woman trying to rebuild her life after being suddenly disabled in her forties. But I haven’t suddenly decided my life would make a good reality show. I intend this space to be a portal of sorts,  highlighting as much real information and resources as possible. Most hyperlinks link directly to resources available on the web that would be helpful to people facing situations similar to my own.

I had no idea before it happened to me, but brain tumors are more common than you might think. And the symptoms are not as severe as you’d assume. I plan to bring more awareness of this health issue to the forefront.

There are amazing resources out there to help the blind and visually impaired live full, independent lives. I’ll do my best to share.

Being a burden to my children and family was my single greatest fear when I awoke after surgery. Part of that was my natural discomfort with having to accept help; part of it was my determination that what had happened to me not derail my children’s plans for the future. Plus, the little things I needed help with – doing the driving, going to the grocery store, telling me whether or not my outfits look the way I think they do – would simply be more organic within a healthy, loving relationship.

So finding a mate, and the ways having a partner impacts the life of visually impaired people will also be explored. Dating can be frustrating anyway; dating in your 40s can bring further complications. But consider the challenges of facing all that when you can’t see clearly.

Lest this sound as if it will be a deep, spiritual quest for my ultimate soul mate and our ability to see past physical limitations to find the love within, let me be upfront. A bigger person might see what I’m going through as an opportunity to stop being shallow and learn to love the person’s inner beauty. I’ve already admitted I’m not that deep. Yes, I want a man I can talk to, laugh with, learn from and who makes me feel safe. But I need to be physically attracted to him too. Remember, I can see this person once I get, you know, up close and personal.

While relationships are not the primary purpose of this blog, I have seen and experienced first-hand how a strong relationship can affect the life of people living with a disability, both positively and negatively. So you can expect this to be a topic of conversation.

If you are still with me, I hope you’ll stick around as I continue to navigate this new world half blind.  And if you ever feel like giving me a shout, I promise to answer back. Not duck my head and pretend that just because I can’t see you it means I can’t hear you either. (the way I may or may not do in real life 😉

8 thoughts on “Welcome to my world…

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s