Why the blog, why I have a story to tell

On April 24, 2008, I went blind. I used to always joke that I wouldn’t see 30, mostly because of the way I lived my life up until April 24, 2005, hard and fast, drinking every day, treating my body like a dumpster etc. How fitting that my prediction should come true, 3 years to the day that I cleaned up my life.

Multiple Sclerosis, My Mess, MS. This disease often presents with Optic Neuritis, the inflammation of the optic nerve, and my case was no different. On May 28, 2006, my right eye went blind, and after an MRI, I was diagnosed with MS. I remember that MRI as though it were yesterday. I actually slept in the machine, having driven back from Prescott in the middle of the night, straight to the hospital. The MRI machine was like a mother’s womb, all warm and cozy, wrapped in a blanket and locked in, with country music coming through the speakers locked on my ears. I’m sure when I was in my mother’s womb, there was country music too, so this idea is not far fetched…The knocking and banging of the machine, like her heart. When I woke up, and they were pulling me out, I kept trying to pry my right eye open before realizing it was open, it just couldn’t see.

I was told the vision would come back. I was told it was temporary. When it didn’t, I was assured my left eye would not suffer the same fate. Wrong again. The vision went slowly that day, first going gray, then getting dark. The last thing I saw was that hospital and the shadows of my boyfriend and friends who came to visit. The doctors were flumoxed; they couldn’t fathom that MS had made me blind. I was tested for every other possibility, and in the end, was given the dx of atypical MS. My boyfriend and I left the hospital with no instruction, no advice. We walked through the store to the prescription counter, arm in arm, like lovers who must touch and while it was loving, it was the only way we knew to do it. I was blind, and he had to guide me, how else was there?

Over the coming months, we saw specialists and discovered audio books. I managed to find the country music station on the tv. I remembered where the buttons were. I was able to call people on the cell phone. But man did I miss texting. And technology was suddenly gone. I couldn’t Google something when a thought struck me, I couldn’t email, I couldn’t journal.

After my boyfriend went back to work, I must have just listened to audio books and talked on the phone. Looking back, I wonder how I stayed sane. I couldn’t accept that I was blind. I couldn’t accept that I would never see myself at 30. I couldn’t accept that I would never see the sun set, never see the monsoons rolling in. Deep depression followed. We found a therapist for me, one who was great at grief and loss. That was when my life started to return.

I started seeing her every Saturday, and before I knew it, we were not only working on my grief and loss from the loss of vision, but on the death of my mom when I was 20, the issues I felt in my relationship, the loss of identity, my limitations. What was at first meant to help me get through the loss of vision, soon became a healing process I had never imagined. I had taken steps to gain sobriety, I had worked through past issues so as not to need to drink, but the therapy finally really released me. It took going blind to achieve this? Like Amazing Grace, once was blind, but now could see. Slowly I was beginning to see, not my face, or my cats, or my boyfriend, or flowers or children, not seeing images and pictures. I was beginning to see who I was, who I could be…

Not long after, my friend called and told me she had ordered me a white cane and a braille book. Harry Potter. The third one. She said throw it in the closet if you want. I knew though, it was time. Start accepting one day at a time, or die. Or stay miserable. Those were my options.

The next day I called Saavi, Southern AZ Association for the Visually Impaired. I had heard about them from a woman who had lost some vision due to a stroke. I called and went to a support group there. My Grandma had bought me a talking watch from there. One of the worst things about going blind was not knowing the time. Not long after my first visit there, my boyfriend’s family offered to fly us out to West Virginia for Christmas. Of course I would go. Of course I would be scared. And that was when I met Dave.

Dave was sent to me for a quick kamikaze lesson on how to be blind “out there”. He taught me how to be properly guided, holding on to a person’s elbow, rather then their shoulder, as I had instinctively done. He taught me how to find chairs, how to trail walls without jamming fingers. How to hold the cane just for identification purposes. How to use the cane to walk around, to learn my surroundings. I thought, when we got to the airport, the cane would be seen and we would be showered with assistance. Ha ha ha ha! They didn’t make a reality show about airports for nothin…

No offered help. We got to the airport and my boyfriend had to juggle his luggage, my luggage, and guide me through holiday travelers. Only when we were standing in line at security, when I was burning up with my winter clothes, when there was no time to take off my coat, did I lose it. Instant tears, rattling sobs, and security was coming. Was I a terrorist? The sobbing blind chic? Well, it got us attention, and I finally got help. A wonderful lady helped me through security. She helped me take off my boots, and they kind of did this relay to get me through the metal detectors. She led me to a bench and then we were on our way.

The ladies room was a problem. I was trying to wait until we got on the plane. One stall bathrooms are so much easier. Dave had told me to stick my cane out and go, but I couldn’t. Women were racing in as though their lives depended on it. Finally I started swearing and a woman stopped and asked if she could help. She whisked me in, waited for me, took me to the sink, took me to my boyfriend, and then was gone. Thank you, kind lady.

The cane helped me learn my boyfriends parent’s house, and after a day, I didn’t need it anymore. The trip was lovely, and I got a huge box full of audio books, which they had to ship to us later.

We came home, and life returned to some semblance of normalcy. I was happy to see the cats and my new kitten, who my boyfriend had given to me before the trip for Christmas. I turned 30 and was just happy I had made it.

I continued lessons with the white cane, called Orientation and Mobility, or O&M. I discovered talk radio, and because of Ed Shultz doing a town hall meeting here, CCR was formed. 3 of us girls, united at that meeting and then hanging out once a week. CCR…wow how time flies.

I guess I felt inclined to tell a little of the story, and its only a little, because that is the reason I am writing now. Everyone thought for sure I’d get a guide dog, but when I found out it means going away for 28 days, I immediately said, no way, no how, not gonna do it, not going. But now, almost a year and a half later, I’m looking into it. I was joking with Chupa that I was going to start a “doggy diary” to document this process, and she said I should, and the blog was started. So…I’ll get to the doggy diaries shortly, and write about my daily adventures as a recently blind woman. Its not only therapy to write, but maybe it will help another. I think its all a pretty good story, and while trying to stay humble, its a story I long to tell.

The strength of the human spirit, the love of friends and family, the trust in something greater than myself, all leading me to come out ok, that is the story. The fact that anything is possible, no matter what, that is the story. And kittens and doggies and books and computers and phones and braille and Saavi and whatever else comes to mind, is part of that story, the adversity, the perseverance, the not giving up. That is the story I want to tell. And lets face it, blogging is easier than writing a book 😉

2 Comments

Filed under accessibility, Adjustment to blindness, Audio books, braille, cats, faith, fellowship, gratitude, guide dogs, My story, Orientation and Mobility, sobriety, spoons, white cane

2 Responses to Why the blog, why I have a story to tell

  1. Funny how going blind can open your eyes! This all sounds so familiar, learning the cane, audiobooks. I was the same way about time, constantly asking Joni what time it was. My talking watch is one of my favorite things!

  2. R

    Yeah, do you ever think back and wonder what the heck you did with your time?? I often wonder that, being pretty busy these days. I so loved my talking watch! Now I use my cell phone again 😉

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