A little history on my eyes

I started to get questions posted to me from Twitter followers and realized that not everyone will actually know me. Yes, I’ve mentioned a lot of it in posts, but many folks missed the main detailss about why I have an eye prosthetic, why I love tech, what caused my vision impairment etc.. etc… Well, the beginning is always a good place, to lets visit Bakersfield California.

I don't know how old I was.

I don’t know how old I was. I think 2-3y?

Bakersfield is a dim, almost nonexistant memory, because I was gone from the town while still very young. Being adopted I can tell you what my folks told me:

*Apparently, I was very premature. In 1956, at Mercy Hospital in Bakersfield, anyway, they usually put preemies into an incubator with pure oxygen and a lot of lights over head. They did not cover the neonates’ eyes, so it is a combo of Oxygen Overexposure and those lights that may have caused my case of ROP a.k.a. Retinopathy of PrematurityI was in normal terms, ‘Blind’ but no one understood this at first. I was not able to tell anybody why I screamed at the high shriek of a vacuum cleaner, Why baths and being dunked into them made me manic, I was a baby for Peter’s sake!

* Somewhere around the 4-6 month stage, my natural mother took me to a Pediatrician and was telling him about my flights of hysteria. Apparently, the Doc gave me a good looking over and told her “I think you had better take her to an Ophthalmologist” It was then found out I had retina damage from my premature birth. 

* This must have been pretty hard on my Birth mom. She was apparently going through a rough patch, later divorced and in the 50’s day care for babies/children was usually a neighbor or some lady you could hire from ads on a bulletin board in the local laundromat.  I do not know where my Mother actually got the people she had to pay to look after me and 3 sisters, but … according to my adoptive Parents, these winners took care of my sisters, and left me in the back room. I was “Different” and they did not know how to care for my sort. She was working 2 jobs -usually waitressing- to pay for these mental giants  – One of whom actually told my mother she’d have to have a days extra money to look after “the different one”.

*My adoptive parents became my parents when my mother’s friend asked if they could help her by taking care of me alone. So they took me to thier house and over time, week-long vista became months, then… You get the picture. My Adoptive mother would ‘show’ me the vacuum cleaner by setting it out and letting me touch and crawl on it. Then she would sit me on the side of the kitchen sink and spray my feet, then legs etc with those ‘dish master’ sprayers until I got used to what was happening. Soon, I was splashing about and happy in the sink.

She seemed to “Click” on how to get a vision-impaired child to not be afraid of the world.

*It was decided after a few months of this that they wanted to formally adopt me, and I always knew I was adopted. I saw the letters from the Lawyers and all. I was told how my oldest sister chose my name, and how I was very, very small at birth.

* Through my years, I never knew how to describe it when I would get the question: “So, what CAN you see?” I thought most everyone read with the books close up, that other kids had to feel some things before really knowing what it “Looked” like etc. I finally asked an Ophthalmologist when I was 15 what I really could see. How could I describe this to someone who has only known good visual ability? He said “Well, the best way I could describe it is that you would see something at two feet away what we would see at twenty feet away”

This is ROP.

This is ROP.

* For the most part I had a lot of the same issues of growing up, with a touch more possibly of being bullied and ‘taunted’ by my schoolmates for being “Different”. I soon started to hide in SciFi, and “Casper – the Friendly Ghost” He just wanted friends, but everyone usually screamed “A GHOST!!!” and ran away. In the Sci Fi’s Aliens got the same treatment. I empathized with Aliens and anyone else who didn’t “Fit in”.

Whatever, While it did upset me at the time, I realize they had the problem not me. In fact, I read a great quote the other week on Twitter. It said something about Bullies being like sandpaper: They’re rough and abrasive and scratch a lot, but in the end YOU wind up Polished and they wind up useless.

I have to say, I agree.

Most of my life, my eyes stayed fairly stable. There was nothing progressively painful or awful, I saw what I saw and dealt with it. But in 1986, my “Bad” eye, the one I never really used anyway, started to hurt a lot! Intra-ocular pressure was over 46. Yes, I know how to say “Glaucoma“, it cost Ray Charles his sight as a child. The normal level is usually at 10-20. I used drops to try to stop the glaucoma, but it wasn’t working at all. When I got to a Teaching hospital in 1993, they discovered my retina had completely detached so it was a write-off. By that time I’d had pain but nothing horrendous.

The Ophthalmologist at this time recommended a course of Cyclo-Cryo Therapy … They would freeze the eye to stop the glaucoma and as I already was blind in that eye, the resulting loss of vision wasn’t a concern here. After 2 treatments, I was pain free and the pressure was now a bit LOW at 6.7. Fine, fine. Finally, in 2009 I started getting a burning pain in that eye and drops did nothing. My pressure was at 4.2 *I* said it was like my eye was festering in my head and could they just take the darn thing out? “We’ll look into that” they said and gave me more drops. I was showing signs of glaucoma in my “Good” eye too! They also said a cataract was formed in there. I might want to have that taken out.

In 2011 I had the cataract in my “Good” eye taken out and I felt reborn! The Glaucoma has gone, I have great distance vision but cannot read print without a magnifier now. That’s fine! I love being able to ride a bicycle and see people more clearly!

But the pain in my bad eye was making me turn to a pal with their Vicodin tablets who shall remain nameless here… and I told the Ophthalmologist I was about to remove it myself!! So, he got me in touch with a cool Ophthalmologist and surgeon; Dr. Ramin Tayani. Tayani took one look at the offending eye and said calmly, “Yes, that is a very disorganized eyeball…” Dr. Tayani then told me they did enucleations, but I might be interested in an evisceration. THAT sounded VERY SCARY! But he explained:

An enucleation is where they would remove the entire eyeball and later a glass or nowadays-a high index plastic-orb would be painted and made for me to pop in when I needed to. Usually, people leave these in and take them out to clean or get polished.

An evisceration is where the surgeon removes the inside of the eyeball, and places an orb of plastic into it and stitches it closed. After this heals, they eye area looks mainly all white. An artist called an “Oculist” takes an impression of your eye area and creates a thick ‘shell’ …what I would call a contact lens, Painting it and making it as close in appearance to your biological eye as possible. Because this option leaves one’s sclera and ocular muscles intact, these ‘shells’ move with you and look far more natural than that old-style ‘glass eye’.

I really wanted a great Oculist. These are very detail-oriented people and if you ever need one, you *DO* want one who is MAJORLY Perfectionist! When you go to see them, it’s probably best to NOT make any other appointments after theirs because they will take a long time, with many pictures of your bio eye and their shell they’re making for you.

After my evisceration, I wore eye patches and had to do this for about 6 weeks. I had some great fun at work because I ‘Blinged’ my patches, painting them, adding sparkly jewels to them. I was rocking this is style folks! Only pain was right after the surgery as my eye socket got used to having a full sized ‘eyeball’ in it again. Mine had atrophied so much it was a couple of weeks before I felt anywhere TOTALLY normal… The first 4 days were the worst. After that it just felt like a stiffness as my socket rebelled against the new orb in my eye enclosure. Finally, I got an appointment and authorization to see an Oculist!

I got to see Beverly Hoffman at L.A. Ocular Prosthetics! She is a very nice lady and here comes the fun part: SHE used to work in the Movies! Before she decided to focus on Patient care, SHE actually painted the eyes of “E.T.-The Extraterrestrial“. She also did John Fogarty’s eyes in “Eye of the Zombie” (1986), and did some later work in “Alien-The Resurrection“.

Check out the EYES! Bev's work!

Check out the EYES! Bev’s work!

As I am a HUGE SciFi Geek and LOVE anything about ET’s Aliens and Space, I was bold enough to ask her what she would charge if I wanted an eye that looked ‘Reptilian’ or something like the ones in V The Visitors (A 1980’s series by Kenneth Johnson) Beverly, Golden hair glowing in the fluorescent lights of her exam room calmly considered and then listed the things needed. “About $3,000. We have the imprint now, so maybe a bit less.” OH, MAN! I Loved her to bits!

Tonight is the night before I go to see her again. My eye area has completely healed and the first prosthetic is now a bit small for me. She took a new impression, and I go to get the new cap fitted tomorrow. Maybe I’ll ask her to make this smaller prosthetic into that “Visitor” type Alien eye I want. But I can’t be too picky, she DID make my eye like E.T.’s! I have what she called “Flecks” in the iris, not ‘straight lines and such. That’s the style she did for other patients and E.T. as well. I think it looks pretty good! 

Better shot of my eyes, You can see Bev's great work!

Better shot of my eyes, You can see Bev’s great work!

I love tech because it is coming into it’s own now. No longer in my childhood books and TV shows, we can do SO much. I have a little touch screen insulin pump, a prosthetic eye and a CGMS that reads my blood glucose values all the time. While not accurate enough to be use on it’s own, It is a wonderful tool to see which way my glucose is trending. I have my iPhone, iPad, and great computer tech at my fingertips, it’s all so good, even the tech of the Oculist and prosthetic eyes!

T-Slim in Starbucks

In Starbucks, Touch-screen Insulin pump

So, there it is. I hope it answers some questions anyone might have. Enjoy life, people, It’s a gift! 

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6 Responses to A little history on my eyes

  1. Paul says:

    I enjoyed that. Nice read. Thanks Jenny

  2. Thank you for sharing your history!! The work on your eye is amazing.. and unless you knew you would never know. I can’t wait to see the new one. I agree.. the “Vistors” one would be different. Talk about a conversation piece.

  3. I’m so glad I caught this tweet from Jenn. Thanks for sharing your story! From a sheer design perspective, this is incredible, as are you! xoxo

  4. Thanks Jenny for sharing all about your eye – what an incredible story! You are amazing and inspiring.

  5. Thank you, I’ve recently been searching for information approximately this topic for a long time and yours is the best I have found out till now. But, what about the conclusion? Are you certain concerning the supply?

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