I wasn’t blogging at a year blind, so I want to write a blog today, my 1.5 year blind anniversary, kind of giving a timeline of my journey up until today. I had the idea a few days ago, and I’m wishing now I had started in a text edit document, because this morning this task feels daunting lol! One memory at a time, hopefully I’ll get most of it down, and I’ve got until midnight. Hey JayNoi, my first deadline 😉
Ok, here goes. The timeline, hopefully with just brief descriptions =D
April 24, 2008 – I woke up that morning, a Thursday, having taken the day off for my 3 year sobriety anniversary. My remaining sighted eye was funny. Hard to describe, kinda like looking through fairy dust. I wrote it off as a migraine. I had gotten glasses the day before, after having a scare with the eye the Monday before. I thought it was just eye strain. But it wasn’t getting any better. At around noon, B came home to take me to the hospital. I was given IV steroids but everything was going gray. I was having difficulty text messaging. They took me for an MRI and I was scared to close my eye. When they brought me back to the room, I could barely make out B sitting there. Earlier I had stared at him, telling him I was memorizing his face. Because I knew. My friend came and brought me a 3 year chip, and I could just make out the 3 lines of the roman numeral. A few other friends came and we had a meeting in the room. I was moved to a room in Neurology, and I could tell the nurse had shoulder length hair, and I made out the stripes on my friend’s jacket, and saw the shapes of the balloons they had brought for my 3 years. I walked the nurse through preparing my injection of Betaseron, an MS med I no longer take. B left late that night, and somehow I slept.
April 25, 2008 – I woke up. All was dark. I called the nurse and asked if a light was on. Yes. But it was dark. I cried and cried and cried. My friend came early that morning and brought me Egg McMuffins and coffee. She sat on the bed and hugged me while I sobbed and cried that it was so dark. When I calmed a little, she read out of her “Each Day a New Beginning” book. Daily meditations for women in recovery. The quote at the beginning was none other than Helen Keller. I don’t remember what the quote read, but I cried. My friend told me to imagine the sunlight. The sunlight of the spirit. So I did. I think that first day was the day I tried line dancing in the hospital, but it could have been the next day, I’m not really sure. I just know I did it in the hospital room. Friends and family came and went, B brought me stuff from home, and I was able to dress myself without help. Having briefly seen the hospital room the night before, I knew the layout, and could get to the restroom to brush my teet, or move to the chairs along the wall, or stand in front of the window to feel the sun. In the hospital they tried everything they could think of. Steroids and other IV drugs, but nothing worked. The MRI showed no new lesions so they thought maybe it wasn’t MS. The attending physician thought it might even be psychosomatic. That first day blind I discovered how hard it was to eat, when they brought me a food tray. I gave up on utensils pretty much at once, and just ate with my hands. Eventually evening came and I went to sleep.
April 26, 2008 – More of the same in the hospital. More tests, continued steroids, more visitors. A lot of laughing and crying, my main concern being the couch on the back patio that the apartment people wanted removed, and the upcoming Carrie Underwood concert I had tickets for. A few walks around the ward with the nurse.
April 27, 2008 – Half a day in the hospital and then they were at a loss, so they were releasing me. The attending wanted me to see my neurologist and primary care doctor ASAP and he wrote me a prescription for a steroid taper and Lexapro, an antidepressant to help me ease into this. I made sure B was ok with taking me home and he was. My Grandma wrote me a check to pay the hospital the grand they wanted, on top of my PPO insurance. We paid, the nurse wheeled me to B’s car, and we drove away. We went to the pharmacy to get the prescription, not knowing how to do this. We wrapped arms around each other, and walked that way through the store. We got home and I just wanted coffee. He walked me in and helped me to the couch. I wanted to pet my cats and I wanted brewed coffee. I had to explain to B how to make coffee. My friend Carl came over to remove the couch, and when He walked in I exclaimed, “Carl! Your hair’s purple!” I don’t think him and B expected me to be making jokes and laughing. But I was just so happy to be home! I wanted to bathe but was afraid of the shower and so was B. I told him I would sit in the tub under the shower, and he had me keep the door open. He helped me get my body wash and stuff within arms reach and I washed. I remember that first bathing as though it were yesterday, it felt so good. I don’t know how the rest of the day went. I think I explored and tried to navigate using the walls. B had to help with everything. The phone rang constantly, worried friends and family.
The rest of April and into May. Exact dates are hazy now.
B took time off work and we went to doctors, had blood tests, tried to figure out what had caused this. I quickly figured out how to turn the tv on and find the country music station, since I knew the remotes, and could manage by feel. B was shocked when he woke up to find the tv on my station. I even managed to make the bed by feel, and again he couldn’t believe it came out so nice. Making the bed was the first major accomplishment, and I was so proud.
B would get coffee ready the night before so I could just hit the button. I made a mess pouring the coffee, and I started using my travel mug so I had a lid and wouldn’t drip when walking with it. B would count out my pills the night before and put them in a box so I could take them. Friends brought anything I wanted, and the Pringles addiction started, because they were easy to eat in the morning with pills.
So that became my morning. Get up, find the kitchen, turn the coffee on, take my pills, eat my Pringles and listen to the country music video channel.
I called Grandma to find out what time it was. I was pretty good with the cell phone, if I had numbers memorized. B told me who was where in the phonebook, and he added A’s, to certain people so I could find them easily. I talked on the phone a lot, for entertainment and support. I started going to Grandma’s on Sundays, and still do so. I know the house so well, its never really been an issue.
May 2, 2008 – My friend and I went to that Carrie Underwood concert. I was incredibly apprehensive, and she was supportive, saying we’d do whatever I wanted. I’d had the tickets for a month and was so excited. B said he knew it was scary, but I should go. He told me I’d regret it if I didn’t. So we went. There was no way I was going down stairs to our seats, so the ushers let us stay on the upper level, and they brought chairs over. It was scary, but once we sat and the music started, it was wonderful! A guy tried to hit on me, and I didn’t know he was there until rodna said, “She can’t see you, we’re just enjoying the music,” Ha! After the show, we sat awhile and then made our way to the t-shirts. My friend described them all and I picked one. She had to help me sign the receipt, and then excitedly said to the clerk that I had just gone blind, but couldn’t miss Carrie. The clerk was astounded, I was just happy I had a shirt.
The rest of May and the next few months all run together. There’s no outstanding dates.
Rest of May 2008 – B went back to work. He called through out the day to check on me. People came over, called. I channel surfed and talked to the cats. I don’t know what I ate. I don’t know how I spent all those hours. I know that out of boredom, I tried cleaning. I was pretty good at it, and very thorough, I had to be, not knowing if I had missed anything. I went to meetings in the evenings with friends. I came home and ate dinner that B brought home. I went to lay down. B found me something to put on the tv. I slept fitfully. I would wake up at 3am. I wouldn’t know what time it was. I didn’t know if it was light out. Eventually I listened for birds. They were my time keeper. I’d listen for traffic, for cars starting in the parking lot. I talked on the phone. A lot. Our phone billss were skyrocketing. I fought with bill collectors since I couldn’t screen calls. I listened to tv, played with cats, this just went on like this. B had class on Monday nights, so Lish came to sit with me.
At some point, B brought home my first audio book. A short story by Stephan King. One cd. He couldn’t believe how expensive they were. My friend worked at the community college, so she started bringing me books from the library. B would get the cd’s out in order so I could listen while he was away. I loved audio books! I just read books and ate Pringles and talked on the phone. And got more and more depressed.
I would not accept. I could not accept. Blind for the rest of my life? No. I would go to the UK for experiemental drugs. If I meditated hard enough on my eye, it would work again. If I focused all of God’s energy on my eye, it would see again.
The phone calls tapered off. The visits tapered off. Lish lost patiencewith my non- acceptance.
Somehow during all this, B convinced me to pick up a crochet hook. I tried making a granny square and it ended up with 6 sides. I kept going on it though, and called it my 6 sided something.
This was life from April to September.
July 4, 2008 – This day stands out because I couldn’t stop crying. I wouldn’t see fireworks. Our apartment had a view of the fireworks and I wouldn’t see them. B bought me the Duffy cd, who I had seen on Ellen and loved. We listened to Duffy that day and she has a song called Distant Dreamer. My new theme song. I cried and cried. We had a Walgreens adventure because I was out of everything. B wrote down all my shampoo and body wash by looking at the bottles and then we went and got all my stuff. The day turned out ok, oh, and I colored my hair all by myself that day, because i got sick of waiting for a friend to help.
Now I was listening to audio books non stop and crocheting during the days. I had also discovered talk radio. So in the mornings I listened to talk radio and suddenly knew what was going on in the world. I fell in love with Dr. Laura, and talked to her. Thats another blog.
I had gotten a talking watch, so I didn’t have that frustration anymore.
September – 2008 – I started grief counceling, and slowly started getting better. One day on the phone with Rodna, she asked if I could accept that some days would be harder than others. Yes. Oh! Ok, I can do that, and I can accept that I am blind, one day at a time. Not forever, for today. My therapist saw me every Saturday. She took me to a support group at Saavi. I had heard about Saavi, but in my non acceptance, wanted nothing to do with it. I learned in that group to put my coffee cup in a pie tin when pouring, and still use a pie tin today.
Towards the end of September, I had gotten really into baseball. I had always hated baseball because it was so slow and boring. But B had it on all the time, and had the MLB Xtra Innings package on the tv and slowly but surely, I started picking up the game. I now loved that it was so slow, because i could follow it. B would explain things to me, and the ultimate Cinderella story was happening. The Tampa Bay Rays, who used to be the Devil Rays, dropped the Devil and started winning. They had used to be the worst team in baseball. I love those stories! I fell in love with the 3rd baseman, Evan Longoria, and the Rays became my team. I was obsessed with playoffs, and they went to the World Series, so I listened to every game on the tv. I then discovered I could listen on the radio, and it was so much better that way, because no one can see, so they describe everything. The Rays lost to the Phillies, but I was a new born baseball fan, in love with the Tampa Bay Rays and Evan Longoria.
October 2008 – Rodna ordered a white cane, a Harry Potter braille book, and a braille labeler from the internet. She told me I could put it in a closet, or whatever, but she ordered it for me. She knows me. She knows once I have something in front of me, I do it, just like crochet. So I called Saavi the next day, after receiving the gifts. Dave would come to see me in the first part of November. B and I were going to West Virginia in December, so cane training was urgent. I was now working on a baby blanket for B’s nephew, to take for Christmas. B and I went to the yarn store, and he picked out West Virginia University colors for me. I marked the blue with one piece of tape, and the yellow with two. And began a ripple pattern that I had memorized. The Granny ripple. Great for blind people because there’s no small stitches to count or go through, except in the foundation chain.
November 2008 – I was reading, working on the WVU blanket, and starting lessons with Dave. He tought me the basics, like how to safely trail walls, how to find chairs etc. Work with the cane in my parking lot, tips for getting into women’s restrooms etc.
By this time I was on disability finally, and had quit cobraing my PPO, switching to AZ’s version of Medicaid. We had gottena homephone so my cell phone bills were manageable, and we had settled into life pretty well. Therapy helped me so much, to realize I wasn’t a burden, gave me courage to ask for what i needed, like more touch from B, since I could no longer see it in his eyes that he loved me. I needed more reassurance from everyone, that I was still me, that I was still fun. We had Thanksgiving and Christmas together with my family since B and I would be in WV for Christmas. My thirtieth birthday was approaching, and I started joking that now I really wouldn’t see thirty. I struggled with people calling me an inspiration, because I was just living day by day, doing what was in front of me.
december 2008 – We began planning for the trip. Rodna took me to Kohl’s to buy winter things. She’s a great personal shopper and fashion consultant. It was odd having all new clothes, because I didn’t know what they looked like, only by her description and what I felt. I could tell everything apart, except for 2 sweaters the same style in different colors. I asked B which was red, and I cut a slit in the tag so I’d know.
Just before the trip, I bought myself the Apple computer after discovering they had a screen reader because a friend had bought me a talking iPod. I spent hours beginning to learn how to use the computer, visiting an old mental health community I belonged to, telling them about getting ready for the trip, and everything I had learned. I had been without a computer for so long, that when I got my Apple, it was like a whole knew world had opened up to me. It was rough learning it, but i picked it up rather quickly. Typing was odd at first, but I had been a good typer before, so it all came back to me. I marked some keys that I couldn’t find by feel. For a about a week I wouldn’t navigate away from that one site because I was scared I wouldn’t get back to it. Eventually B helped me set up a new gmail account since I couldn’t remember the password for my old one. It was so great to have email again!
Right before the trip, B picked me up from therapy and he had a kitten. She was my Christmas present. I was so intimidated. I was afraid I would kill her. I was afraid I couldn’t take care of a kitten blind. What if she got stuck somewhere? I quickly fell in love though, and it was so hard to leave her to go to WV.
We went on the trip and it was an adventure. I’ve blogged about the restroom issue. The family was shocked at the blanket I had made. They couldn’t believe it. I had washed it at Grandma’s with baby detergent. They called it the magic blanket because the baby would stop crying when they gave it to him. I loved holding the baby. It didn’t matter that I couldn’t see him. They told me he just stared up at me, and when I told him to make noise, he would coo.
I learned the house that first day, using my cane, finding shorelines with the floor rug and then the kitchen counter, leading to the table, leading to the door outside. When I came out the day without my cane, I scared B’s folks because they didn’t hear me coming. I brought crochet with me, and worked on a blanket for my friend. It was a wonderful trip!
My birthday was the day after we got home, December 30. I don’t really remember it; it was just another day I think. B had bought me a diamond necklace in WV for my birthday. I’m sure he ordered really yummy take out, but I just don’t remember. I was still not too keen on going out anywhere, because of the bathroom issue, and eating in public wasn’t fun.
January 2009 – Life returned to “normal”, being back from the trip. I continued O & M with Dave, getting into it more, rather than the hurried quick lessons for the trip. He enjoyed how I handled the trip, aspecially jumping on an escalator going up when the line at the elevator was too long at the airport haha!
I continued really learning my computer, and joined an ACB (American Council for the Blind) email list for the affiliate in WV, since I didn’t find one for AZ. I started emailing with the women on that list and they were the first real link to the blind community. I could tell them my fears, my difficulties. They gave me tips and resources, and encouragement, telling me how much I had already accomplished in such a short time, something I didn’t really see for myself.
I surfed the net like crazy from then on, googling, listening to youtube, finding resources. I joined an email list for web developers working on web accessibility, and would “test” sites for them. I was a novice screen reader user, and a Voiceover user at that, so they were pretty interested in how I handled sites.
B had class on Tuesdays now, and Lish couldn’t sit with me, so I started hanging out with Cortney and we would go out to eat after the meeting. I had been so leary of eating in public, but now I just didn’t care. Life continued on like this, spending a lot of time on the computer, going out with friends, cane lessons with Dave, gaining confidence, finding out about all the cool stuff for the blind. I had also started crocheting children’s blankets for charity after Rodna had the idea. Cortney and I went to the yarn store, and she helped me find cool colors for children’s blankets, and B later told me what was what so I could label with tape.
February 2009 – I finally agreed to go eat with B. We went for fondu for Valentine’s Day. Wow, my first meal out with B and we pick fondu haha!
March 2009 – I think this is when I started taking more classes at Saavi. Goals and then Stars, and I was making friends with other blind people. Saavi has drivers and they would come pick me up. Soon I knew the place well enough to get around on my own with my cane. I showed the tech department my Apple, since they just teach Jaws, and were really curious. They were very impressed with it, and impressed with me for teaching myself.
Baseball was getting ready to start, and i was getting very excited! Also, April was coming up, and it would be my 4 year sobriety anniversary and 1 year blind. Definitely a day with double meeting.
April 2009 – I had a really bad allergy attack that left my right ear very muffled. It scared the heck out of me, but Zyrtec cleared it up. It prompted me to start learning braille though. The thought of losing my hearing and not knowing braille was too much to handle. So I started braille classes. Baseball was starting, and i made my first online purchase all by myself, on mlb.com. I got a Tampa Bay Rays tank top and cap. I tracked the packages and was so excited when my package arrived. I not only had ordred, paid for, tracked the package all by myself, but I actualy answered the door when the UPS driver came. This was big, because I was terrified of knocks on the door. I ended up figuring out how to use the mlb.com site to sign up for Gameday audio. Its a seasonal subscription, and you can access all the games and listen to the home radio broadcast. This took some doing, and finally I found an accessible portal for it, so that I can use it. It is the best $14.95 I have ever spent! I could pick and choose games and listen with my headset so B could watch whatever game on tv. It was wonderful!
I settled in to new routines after April, going for braille class, studying braille at home, continuing hanging out on the computer, teaching myself how to use iTunes, importing all my cds and a lot of B’s, making playlists. I hibernate in summer, because its so hot. The O & M lessons had to be creative, because we had to do a lot of indoor work. So they tapered off quite a bit, because there’s just not a lot to do indoors.
I went to the pool with friends a few times, continued Tuesdays with Cortney and we added Carol. I listened to baseball, learned the talking cell phone I had gotten with my tax return, bought a new bed, worked on more ways to clean the house, started vacuuming on a more regular basis, went to meetings, chatted online, classes at Saavi, you get the drift. Oh and therapy had started tapering off as I was doing so well. I didn’t cry on the 4th of July; it was just another day, this time with baseball.
I don’t remember what month it was, it was during interleague play, is that June? July? August? I don’t know. But we went to an Angel’s/Diamondbacks game in Phoenix. I was an Angels fan as well as a Rays fan, because they had a story that pulled at my heartstrings. The game was great, and another big deal for me as a blind woman. A year before I had just sat at home…wow.
The rest of the summer is a blur.
August 2009 – I started using the public transportation for people with disabilities. It was rather scary, because it was so different. They come and pick me up and take me to my destination, and then back home again. Starting to use that allowed me so much more independence. Now here I was, getting myself to Saavi and back, for classes. I had taken a cab once, and that was an accomplishment, but i didn’t care for it much, and its expensive.
September 2009 – B finished his Masters degree! I started my workouts at Saavi and decided to apply for a guide dog all in the same week. I started this blog a week later. My energy levels and stamina are vastly improved and the motivation of getting a guide dog is fuel to my determination. Baseball playoffs were around the corner, my Rays were out, but the Angels were in.
Some things have changed, like Cortney moved away, so I don’t have those Tuesday nights. But i replaced Tuesdays at the diner, with choir practice. I joined a women’s choir directed by my old director who I sang under back in school. What a joy to be singing again, and learning music in an adaptive way!
October 2009 – I’m working on fall cleaning. Getting everything all spruced up for my future home visit from Guide Dogs for the Blind. Motivation is good for cleaning, not just workouts hehe! I’m working on my music, I graduated grade 1 braille, I work out twice a week, choir rehearsal once a week, I just finished a cooking class. I listen to books sporadically. I haven’t crocheted in awhile, which I need to get back to, because I’ve abandoned my charity blankets. I blog constantly haha! Baseball playoffs are almost over: The Phillies are going to the World series again, and the Angels are battling the Yankees for the American League spot. They are down 3-2 in the ALCS and are back in New York tonight. Go Angels!
Today, October 24, 2009 – A year and a half later. I woke up late today. About 9:30. I was glad to sleep in. I made my way to the kitchen with ease, and pushed the button on the coffee pot. Even though I can do it on my own now, B still insists on gettng my coffee ready for me at night. I sat down at the computer and caught up on emails and read a few new blog posts, and then set to work on this post. I’m just now wrapping up the first draft and its 12:36. I’ve taken a few breaks, but I’ve mostly been writing. B got up and watched WVU win, and just ran out to run his Saturday errands. When he returns, we’ll do laundry, and I’m going to clean up the kitchen. I’m in an incredibly grateful mood on this 1.5 year anniversary of my blindness.
I wanted to get this all down chronologically, so I can see it all as it happened, more or less, I know I’ve forgotten things. I’m slowly realizing, through blogging, just how far I’ve come, and the pride I feel today is something I cherish, and also finally admit I deserve. I know I’ve faced life with gusto and determination, and i know that not everyone would. This post is mostly about the blind stuff, and there is so much more, which has come out in other blogs, and which has yet to be discussed.
!! I often ask myself now, if I could see again, would I want to? And I can’t honestly say I would. Look at what I have today! Look at what I’ve seen about myself, look at how much I’ve grown! Look at all the cool stuff I get to do, and all the great people I get to meet! Look at how strong my faith is, the one thing that never waivered through it all, my faith in my God, my faith in my sobriety, my sobriety the one thing I had a choice in when I went blind. The fact that I didn’t turn to the bottle to cope with sudden blindness, that I leaned on my God and my fellowship and my humor and my passions and my strength! This is an experience I’m glad I have…this is an adventure like no other, and I don’t think I’d trade it, not even to see again. I saw for 29 years. With eyes. Now I’m seeing in a whole new way, a way which is too beautiful for words, a way which I cherish.
Looking back to a year and a half ago, I never would have thought I’d feel this way today. But I love my life, and I can’t wait for the future. I can’t wait to see whats around the corner. I can’t wait to wake up every day and see what people have written about in their blogs. I can’t wait to get to Saavi and see my friends.
It took going blind to see. And that, is the greatest gift from God and life and love…On to the next adventure, the next year and a half!
(I’ve pretty much finished re-reading and editing this monster. I’m sure there are some mistakes, but it sounds ok, so off it goes. It’s now 2:01pm lol! Off to make my afternoon coffee!)