Monday, February 24, 2014

Legally Blonde, I Mean Blind

Friends, this post title has been sitting in my drafts for six months now.  Six months without a single sentence written.  I knew from the beginning I wanted to write about being legally blind, I just didn't know what I wanted to say.  I still don't, but I'm gonna give it a go anyway.

Before I jump into the gory details, I want to make something clear. Some of this is gonna sound really shitty.  It may seem like I'm complaining or like I'm being all woe is me.  I know I'm not always Sally sunshine and my attitude about certain aspects in my life has been somewhat negative at times, you guys have bared witness to that.  This is NOT one of those times.  As strange as it is, I am in no way shape or form, nor have I ever been down in the dumps about my eye condition.  I am so thankful for the vision I do have.  I am so thankful that my Glaucoma has been under control for the last 9 years.  I am so thankful that I've been able to go to the top eye hospital in the country and that the best doctors in our country have told me that I'm doing everything in my power to keep the vision I do have for as long as I can.  If I can make it to 50 without going blind, whatever else happens will be ok with me.  I've made my peace with this. 

Now we'll get started.  This is me at 3, the age the doctors told my parents I'd be blind by.  Currently the uncorrected vision in my good eye is 20/400, my bad eye is 20/800.  We're talking can't see the big E with my bad eye people.

Here I am at 11 (feel free to laugh).  You've heard the term coke bottle glasses right?  Well, this is what they look like, bifocals and all.

This is my collection of glasses as of today.  Thankfully technology has advanced and my glasses have thinned out.  With the exception of the pair with the telescope of course.  Aren't they cute?  I had to get those while I was living in the great state of NY so that I could operate a motor vehicle.  Scary thought considering I just told you I can't see the big E right?  It may look like I've made an art of buying eyeglasses, but when you have 3 different prescriptions you're bound to have a lot of glasses.  I recently donated 6 pairs and was able to check off number 42 on my list of 101 Things In 1001 Days.  Also on that list are learning to read braille and re-reading Helen Keller's biography.  If you've got old eyeglasses sitting around the house, donate them please.  There are people in need (public service announcement over now).  

Ugh, I'm already getting ahead of myself.  Let me back up and start from the beginning.  I was born on August 27, 1979 with cataracts.  Yep cataracts, the disease that most people get when they're 80.  For those who don't know, cataracts are the clouding of your lens.  Your lens is what protects your eye.  Well, when you're a baby and you have your lens removed (the cataract) replacing it isn't an option because your eye hasn't fully developed.  Because  my lenses were removed before I was 1, they weren't replaced, because they weren't replaced, I attracted some other fun eye diseases like Macular Degeneration and Glaucoma (also typically old folks diseases).

No dramatics here folks, Glaucoma aka the silent blinder, will absolutely leave you vision-less if not treated regularly.  These are the Glaucoma meds I take everyday, two times a day so that I don't go blind.  On a positive note, because we have to look at the bright side of things right, the yellow drop makes your eyelashes grow really long and thick.  It's basically a souped up version of Latisse.  And...if I were a pot head, which I absolutely am not, I could totally use my Glaucoma as an excuse to get a medical marijuana card.  I reserve the right to redeem said card at the age of retirement.

I had a couple other surgeries as a kid (a muscle surgery because I also have a nystagmus) and then managed to go surgery free until thirteen years ago.  At age 22 my Glaucoma decided to spike despite taking my medication and I agreed to have what will be my last eye surgery.  You can only operate on something so many times and unfortunately in my case this last operation was the straw that broke the camels back.  I am in no way saying the procedure I had is not a viable option for Glaucoma patients, I am however saying that every time you operate on the eye, you're causing more nerve damage and in my case having a shunt/valve implanted into my left eye was not a good decision.  I'm going to refrain form totally bashing my Dr. at the time, but it is my belief that because of this surgery I lost a good deal of vision (like going from reading lines on the eye chart to having to have someone test your vision by holding their fingers up 6 inches from your face).  I am also going to refrain from bashing my parents for not asking more questions and/or recommending that I look at alternative options.

I should have done the same and post surgery I decided it was time for me to take my healthcare into my own hands (which I encourage you all to do).   I've been able to find some wonderful doctors who respect my choice to avoid any future operations and are willing to work with me to find the right cocktail of meds.  While we're on the subject, Glaucoma meds are no joke.  I've been on the above cocktail for 9 years now and I'm beyond happy to report that my eye pressures are 100% stable.  I'm so grateful that I found the will to continue on this regiment because for the first few weeks, I didn't think I was going to make it.  True story, the week I started taking Diamox I was so sick I missed the entire week of work.  After 4 days of being cooped up in the house, I decided to walk the one block to the dry cleaner to drop off some laundry.  Half way there I passed out on the side of the road and shit my pants.  I walked the half block back home in D's suit pants and died for another 3 days.   

I don't drive at night, I never have, but on the plus side, I've never have to be the DD.  I have to take a behind the wheel driving test every two years (even at 34 it's stressful people).  I can't wake up and see the alarm clock.  I can't do anything without glasses or contacts or both.  It's amazing how you adapt though.  I've taught myself so many ways to do the things I otherwise couldn't do because of my low vision.  For instance, typing without looking at the keyboard is a cake walk for me, it has been since pretty much day 1.  When you don't relay strongly on your eyes to do things, you learn to memorize a whole lot quicker.  I don't know how it happens, but it does.  I take pictures of things I can't see with my iphone and then I zoom in so I can read whatever it is that's printed super tiny.  People who can see well are always amazed when I share that trick.  I mean, if you can see why would you ever think to do that?

God, I think this is probably the longest post in the history of Brass Honey.  Like every other post, I share what I do because I think that there might be someone reading living through what I've been through.  If I can help someone in a similar situation, I want to.  It makes it all worth it.  I mean that's why were here aren't we.  Anyways, I know this post will not be relevant for most of my readers, but if nothing else you now know a little more about me.  Make the best of things friends.


  1. OMG!!! 3 year old you... cutest thing EVER!!! Seriously, I am a FREAK for kids in glasses - I just think it's ADORABLE!!!! :D 11 year old you... it's not the glasses that concern me... ;P Hahaha... you know I love you! :D
    All joking aside though, vision is something most of us (myself included) take for granted every single day. Pete's best friends dad is blind and I've seen firsthand how difficult it can be.

  2. I have to second Amanda, your 3-year old picture is CRAZY cute! It is so good that you are able to look on the positive side (still that really sucks and is a lot to deal with).
    I cannot imagine having to take the driving test every 2 years...I would be nervous every time for sure. Are you awesome at parallel parking as a result :)

  3. What an interesting post. I can't imagine dealing with that, but I guess like with all other things, you just learn how to adapt. Thank you for sharing, I really enjoyed learning a little more about you.

  4. Hey girl! I was going to post about my eyes this week too! I was born with cataracts too! My whole fam bam was too. I do not have glaucoma but I feel you with the glasses, surgeries and all around things that we know about thanks to vision problems. You look so cute in your tick old glasses, from one girl with tick old glasses to another!

  5. I think your attitude about this is awesome. I got zero woe is me from you even though I think you're due some.

  6. What are good organizations that take old glasses? I have some, but that's not something I'm very familiar with, so I don't know if it's regional or nationwide organizations, mostly. The vision problems and surgeries that you've dealt with sound so tough. I haven't had any surgeries, and I'm so thankful for that. I think it's so good to be grateful for how much I can see and aware of how much I rely on glasses--it's a good thing that we live in a age where the medical field has been able to accomplish so much in allowing people who aren't born with perfect vision to be able to see more for as long as possible.

  7. This is interesting to me because I have really bad eyes and hadn't come across anyone my age with with eyes as bad but via blogging I've discovered others who have it worse then I do. I actually thought I would go blind until I finally got he courage to ask and my eye doctor said I wasn't blind and that I'm not on track for that. Being legally blind is totally different-I know that now. MY Rx is pretty ridiculous though. My retina in my right eye detached for no reason aside from poor eye sight and I did have to have it surgically repaired. My sister has an eye disorder and she just got a shunt put in one of her eyes and was told the steroids she needs to keep her eye pressure down is probably going to cause cataracts. My husband is 20/20 and I'm very jealous! Sounds like you manage well and deal with it as best you can.

  8. You know, I can't relate to this, but I am glad that you shared and I am glad I read, because you've offered me a perspective I may not have otherwise come across. I love hearing about how you've adapted- tricks that some of us might need when we get a little older and our eyesight begins to fade. I've always been thankful that my eyesight is not terrible- it's the best in my family (I do wear contacts/glasses, but a lower prescription by half to the rest of my fam). I think it's something so easily taken for granted, and your story is a great reminder of that. And I think you presented it in a very matter-of-fact, yet positive light. :)

  9. Your story is very inspirational. It just goes to show that no matter what life throws at us we have to push forward. Thanks for the dose of inspiration.

  10. What a great, interesting, informative post about something so many of us take for granted. I can't even put eyedrops in by myself and freak out at the eye doctor over the puffs of air. When I had a doctor suggest the numbing drops and poking my eye with the blunt tool, I REFUSED the test. So basically from where I'm sitting, you are super brave!

    We all have our stuff - some big, some small, some fleeting, and some that won't go away. Even though many of your readers may not be able to relate to your specific struggle, I hope that you have inspired more people to share more of themselves on their blogs rather than the silly, flippant posts that have been taking over. Happy to hear your vision is stable and you found something that works, and hey, long lashes are awesome...

  11. this is such a great post! I have really horrible eyesight, but not the other issues that you are dealing with. I complain a lot about my eyesight but I know i'm lucky that I can wear contacts and glasses. I tried getting lasik about 8 years ago but was told that I wasn't a candidate due to the combination of my high prescription and astigmatism. i'm going to look into other procedures in the next few years though because wearing my contacts (I can only wear hard/gas permeable) has become pretty uncomfortable. my glasses prescription is about -12 in one eye and over -14 in the other. so I am absolutely blind without my glasses/contacts. it has been frustrating so I can only imagine what you're dealing with with your other issues. hope that you can continue on your regimen and that it will continue to work for you!
    -- jackie - jade and oak

  12. ok, i laughed at 11yr old you. but i posted a pic of me at age 5 with my lego hair so i'd say we're even.

    that said, i have friends and family who are legally blind. my husband is in the early stages of glaucoma and has to put drops in his eyes for the rest of his life and has to get his eye pressure checked regularly and see the specialist to reevaluate the situation every 6 months. we all take our vision for granted.

    thanks for sharing your story!

    -kathy | Vodka and Soda

  13. I may not be affected by this condition, but I absolutely appreciate you putting it out there. I think it's hard to share things we perceive to be "negatives," but like you said, you have no idea who's reading. I recently read a post that hit close to home and just having someone who could relate was a huge relief for me, so good for you! And this makes your career and blogging even more impressive!!

  14. Thanks for sharing your story. I think spreading awareness of any illness is important. I also really appreciate your goals to learn braille - even if you never do go blind. At the very least you can use the skill to teach and help others as well as be able to truly relate to those people. Good for you for taking your health into your own hands and keeping a positive outlook.

  15. Oh my word, this post was amazing, thank you for sharing something that is very personal for you and something you have to deal with every single day. You really are doing incredibly well coping with this and being so positive. And being proactive! (wanting to learn braille and really taking care of your condition). I can only imagine what this must have been/must be like for you. All those surgeries would be terrifying.

    And talk about Throwback Thursday (a couple days early) these pics are too cute. Your glasses at 11 are kinda like my Tommy Hilfigers ;) And I love the socks and shoes combo :) And I love your frames in the middle, very cute!

    Shannon, you are a very strong woman and your attitude is very inspiring you should be super proud of yourself. You're amazing!

    Love and hugs

  16. I am most definitely going to donate my eyeglasses that I no longer use after reading this post.