I went temporarily blind last week. I've had uveitis since about 2009. It's an autoimmune disease that involves inflammation of the iris of the eye. It's considered an extra-intestinal symptom of Ulcerative Colitis. You can read previous posts on this blog to learn more about my life with UC. I've had numerous flares of uveitis over the years, but never this bad and never this sudden or severe. I see my general eye doctor as well as a retina specialist regularly to monitor my eyes, typically every six months or so, and more often when in a flare. I've seen additional specialists over the years, including at the Ross Eye Institute, and my eye problems were one of the reasons I began to consider going onto a biological medicine to suppress my autoimmune issues. My eyes have been relatively well controlled over the years, thankfully. Losing a colon is traumatic, sure, but losing my sight? I never wanted to consider it. During all of my uveitis flares, I never had symptoms with uveitis that were so bad that I could not work. Humira, the medicine I was on for 3 years is an ANTI-TNF medicine....so it treats the entire body systematically and is also approved for treatment of uveitis - so I didn't have any uveitis flareups while I was on Humira. I saw my eye doctor just a month ago, after starting on the Entyvio, and my eyes looked good, clear, and healthy. Uveitis is one of the leading causes of blindness in the United States, particularly within the working age population. There is no cure. Some people have one flare and then never have another flare. For some people, it's a recurrent, chronic problem.
Uveitis makes your eyes extremely light sensitive and causes pain behind the eye that feels like your eye is being pushed out of socket. I describe it as feeling like when Homer Simpson grabs Bart by the neck and squeezes his eyes out. The inflammation also causes vision loss. I woke up on Tuesday morning, September 26th with some pain and slight vision loss. Those who have had vision tests probably understand that 20/20 vision is standard on what is referred to as the Snellen eye test. My vision is about 20/80 without my glasses, my glasses correct it to 20/20 in one eye and 20/25 in the other. I woke up that Tuesday with vision reduced to about 20/60 while wearing my glasses. I went to the eye doctor and was prescribed steroid eye drops four times a day and dilating drops twice a day, the standard treatment I've used in the past. The steroid treats the inflammation and the dilating drops reduce the pain from the inflammation and prevent the pupil from sticking due to the scar tissue from the inflammation. My vision got worse as time progressed. By Thursday, my vision had reduced further to about 20/400ish. I could not see the big E on the eye chart. I had no vision at all in my left eye- not even light and shadow. Definitions-wise, legally blind vision in New York State is 20/200. My eye doctor changed my drops to every two hours including at night. I also started on oral prednisone steroid. By Sunday night, I could see lights and shadow and color in my left eye. My vision continued to be within the moderate to severe visual impairment range. On Thursday October 5th, my vision checked in at 20/125 at the eye doctors. My doctor opted to use steroid injections to directly provide 50 doses worth of steroids to my eye. This should help my vision clear more quickly. The shots made my eyes feel puffy and swollen, like I'd been crying all day. The day after the shots, my eyes felt bruised and sore. My eyes have slowly turned bloody and gross-looking since the shots, but it's a small price to pay to try to preserve my vision. My vision is hovering around 20/80 to 20/60 with my glasses on right now, so it's getting slowly better each day. It's just a waiting game to see if my vision does come back. At least right now, we're within a range that is fixable by lenses. We won't know if I suffered any permanent vision loss until all of the inflammation is gone down. Here's a chart showing the differences between different vision values:
Uveitis makes your eyes extremely light sensitive and causes pain behind the eye that feels like your eye is being pushed out of socket. I describe it as feeling like when Homer Simpson grabs Bart by the neck and squeezes his eyes out. The inflammation also causes vision loss. I woke up on Tuesday morning, September 26th with some pain and slight vision loss. Those who have had vision tests probably understand that 20/20 vision is standard on what is referred to as the Snellen eye test. My vision is about 20/80 without my glasses, my glasses correct it to 20/20 in one eye and 20/25 in the other. I woke up that Tuesday with vision reduced to about 20/60 while wearing my glasses. I went to the eye doctor and was prescribed steroid eye drops four times a day and dilating drops twice a day, the standard treatment I've used in the past. The steroid treats the inflammation and the dilating drops reduce the pain from the inflammation and prevent the pupil from sticking due to the scar tissue from the inflammation. My vision got worse as time progressed. By Thursday, my vision had reduced further to about 20/400ish. I could not see the big E on the eye chart. I had no vision at all in my left eye- not even light and shadow. Definitions-wise, legally blind vision in New York State is 20/200. My eye doctor changed my drops to every two hours including at night. I also started on oral prednisone steroid. By Sunday night, I could see lights and shadow and color in my left eye. My vision continued to be within the moderate to severe visual impairment range. On Thursday October 5th, my vision checked in at 20/125 at the eye doctors. My doctor opted to use steroid injections to directly provide 50 doses worth of steroids to my eye. This should help my vision clear more quickly. The shots made my eyes feel puffy and swollen, like I'd been crying all day. The day after the shots, my eyes felt bruised and sore. My eyes have slowly turned bloody and gross-looking since the shots, but it's a small price to pay to try to preserve my vision. My vision is hovering around 20/80 to 20/60 with my glasses on right now, so it's getting slowly better each day. It's just a waiting game to see if my vision does come back. At least right now, we're within a range that is fixable by lenses. We won't know if I suffered any permanent vision loss until all of the inflammation is gone down. Here's a chart showing the differences between different vision values:
In the past year, I have dealt with a lot. My standard Ulcerative Colitis, including fighting with doctors and with health insurance, trying to figure out what was wrong with me for so long. Drug Induced Lupus that severely limited my mobility last winter. Kidney issues that brought me to the Emergency Room. Muscular issues in my back that brought me to my knees and led to months of physical therapy. A friend who was like a brother to me died. And now, blindness. How much can a girl take?
People often ask me how I stay so positive through all of these struggles. Honestly, my secret is just to buck it up and deal with it. It could always be worse. I was raised by a father with the philosophy of "welcome to the real world, life's not fair." When I was young, it was annoying to hear him say that, but as I grew, it became a comfortable statement to hear. It's kind of a cop out kind of advice, but it's also the world's most applicable advice - just as fitting when you don't get to buy the barbie you want or when a boy doesn't like you or when you lose your job. The world isn't fair. We don't get to choose the struggles that are thrown at in life. But you never know what you can survive until it's thrown at you. All we can do is take the things that we can control and make the best out of it. Why choose to dwell on sadness and bad things?
My Grandpa Violanti used to refer to me as a fighter, always telling me that I was cut from a different fabric than my siblings. I still feel grateful every day that I don't have to deal with their issues. And I fight, hard, every single day, because it's my nature - to fight, to survive, to thrive. I am fiercely independent, to the point where it's probably a character flaw. I hate relying on people, I hate feeling helpless. Even in blindness, it felt awkward and overwhelming to get so many "how can I help" messages. Don't get me wrong, I appreciated every message I received, and I have felt so much love and support. I have read (well my phone read them to me) every text, tweet, facebook comment and I'm sorry I couldn't physically reply to them all. But at the end of the day, the empowering part was to realize everything that I could do as a blind person.
A lot of people offered to bring me dinner. I didn't need you to bring me dinner, because it was an exciting challenge for me to make my own dinner. I ordered groceries from Instacart last Sunday. My first cooking effort - my standard baked mac and cheese. A recipe I've made a million times before, perfected over the last 20 years. I made a roux sauce as a legally blind person, because I never halfass anything in my kitchen. I scalded the milk badly and my pot has been soaking for days and is still kind of crusty, but I made it. I accidentally didn't coat all the pasta in the cheese sauce so part of it wasn't as yummy as I would have liked. But it was edible and I did it.
On Tuesday, I walked to the Teddy Roosevelt site because I needed to pick something up. I could have called you for a ride, sure, but I needed to be able to do it myself. I walked there perfectly (learning that downtown sidewalks are MUCH smoother and better condition than Allentown sidewalks). I then took the bus home, asking the bus driver to help me distinguish the singles from the fives in my wallet. I attended a Transit Oriented Development meeting with many of my professional colleagues on Wednesday....it was awkward not recognizing a few people who spoke to me, but it all worked out in the end.
 |
| My first attempt at blind cooking |
On Tuesday, I walked to the Teddy Roosevelt site because I needed to pick something up. I could have called you for a ride, sure, but I needed to be able to do it myself. I walked there perfectly (learning that downtown sidewalks are MUCH smoother and better condition than Allentown sidewalks). I then took the bus home, asking the bus driver to help me distinguish the singles from the fives in my wallet. I attended a Transit Oriented Development meeting with many of my professional colleagues on Wednesday....it was awkward not recognizing a few people who spoke to me, but it all worked out in the end.
There's been a few saving graces I've realized this week. First, the innate benefits of living in community. We all have communities we live in - our friends groups, our work colleagues, our churches or schools, families, etc. Here I mean physical geographic community. Living in a hotel has been a godsend. When I woke up and couldn't see, I was able to find my way to the front desk, hand the staff member my phone and have him call my doctor for me. He then ordered me a lyft and sent me on my way.
The staff at Public Espresso have kept me in good company (and coffee and baked goods), and helped me order groceries from Instacart. My neighbors have helped me, providing a supportive ear, and my landlords have provided hugs and encouragement (and sarcastic jokes from Rocco...because of course). Having lived in the building for more than 5 years has been a huge help too. Even when my vision was 20/400 in only one eye, I knew where the elevator was. I knew how to feel the wall to the front desk. I know how to work my light switches, my shower, my stove. Having spent the last seven years living Downtown, the majority of which without a car, I already know Downtown Buffalo intimately by foot. I was able to walk to CVS to pick up my prescription as a legally blind person with no trouble. I know where all the cross streets are, I know where the bus stops are, I know what buildings look like, I know where every garbage can is. Bonus points for car free downtown living. I lived in my first apartment in Eggertsville also for five years...it was there I had my first uveitis flareup. If I went blind in that apartment, I would have been stuck...maybe I could have walked to Value or Rite Aid to ask one of their staff to help me use my phone?
Other things I've learned:
 |
| Public Espresso Groupie |
Other things I've learned:
- Thank you to my high school typing teacher for teaching me touch typing all those years ago....I am able to type this without looking at the keys.
- Talkback and other accessibility options are a godsend. Listening to my phone read your instagram captions is hysterical. Technology is super cool and exciting, and I know there's even more technology out there for people with long term and permanent blindness. But even just with the simple talkback feature installed on probably every cell phone, I have been able to communicate. It's slow and sometimes glitchy, but I wouldn't have survived without it.
- A lot of websites are not designed well for blind accessibility. I've never been so aware of font choices and color combinations. The most frustrating is when half of the site is fine but then you'll be reading and halfway down the page the rest of the site is completely unreadable because of the way the site is formatted. I'm sure webdesign types would know more about how to explain this or how to combat this, but it felt like it's a very obvious problem that people don't think about when designing sites. I will really consider this particularly when I lay out maps, because I feel like now I'm much more intune with how things look with low visibility.
- Audio captions for the blind on TV shows are hysterical. It describes the actions that are happening when there's not dialogue so you can keep up with the plot. It is the best when watching NCIS (Gibbs stares).
- It's been weird being home and watching/listening to tv. As someone who is not really a tv person, it was nice for a few days, but I'm ready to get back to working and my regularly scheduled life.
- Phones also can describe audibly the photos you post on social media. For example, it will say "photo may contain three people, smiling, outdoors, trees, nature" to try to describe the scene. If people are tagged in it, it can tell you that too. It's super interesting how visual our sharing of our lives is these days....I've posted a lot of snapchats and instagrams and I cannot wait until I can see clearly again to see just how blurry and odd the pictures I've been taking are.
- The staff at the library were incredibly helpful in trying to help me find books on cd to listen to or download. I asked for ten to fifteen different titles and they kept not having any of them. But they were so patient and nice to me while I made them look them all up. You know I love libraries already, but this just really felt good to feel like I wasn't a burden when I totally felt like I was. One of my first thoughts when I couldn't see was my bookshelves full of all of my beautiful books and the fear that I'd never be able to see to read any of my books again. That was one of the most depressing thoughts I had through this whole process.
- I feel like I've learned a lot about mobility and accessibility from an urban planning standpoint that I could probably write a whole paper on once I get my thoughts together. As someone who already uses the bus and the subway, using the system with low vision is an entirely new experience.
- Stairs are the worst.
In summary, thank you all for all for surrounding me in a bubble of love and support these past two weeks. Hopefully we're heading out of the worst of it now and life will be back to normal soon. I've really appreciated everyone who's reached out from near and far. As I've said it's been hard to keep up with all of the comments and posts to physically reply to everyone. I love you all!
No comments:
Post a Comment