Personal History: Me, Myself and Eye

It has taken me two weeks to write this. My vision is blurry.  I put drops in my eyes all day and before bed. 
If there are grammatical errors or typos – ugh, so be it.
I am waiting on a second pair of lenses with a stronger prescription.  Cross your fingers for me.

A few years before Ma’s passing she suffered from macular degeneration due to uncontrolled diabetes.  The easiest description for this medical issue is this: Diabetes caused rogue blood vessels to form on the backside of Ma’s eyes.  Those rogue blood vessels smothered the “good” blood vessels.  The end result was the loss of her vision (in her one good eye).  Ma’s vision backstory is that when she was a toddler, and living in a coal camp, a neighborhood boy pumped up the air in a bb gun (no bb loaded) and pointed it at Ma’s face and pulled the trigger, thinking incorrectly: “no bullet, no harm”.  Best I can remember, the diagnosis was something along the lines of a displaced retina.  Ma could see shadows with that eye but no detail and nothing more.  Because of the injury, she had one blue eye and one green eye.  As a little person, Alex would take Ma’s face in his hands and say “What colors are your eyes Mawmaw?”  With the loss of vision in that eye, it was imperative to maintain the vision in the “good one”.  So, when it was suddenly gone, panic ensued.

Now, let me say, there were times I wished I knew the name of the little boy who pulled the trigger. Because “no harm no foul” is bullshit. He pointed a weapon (no matter how less-lethal it was) at a toddler’s face and pulled the trigger. It is a good thing that those were not “my days” as a woman in society.  I might have had a talk with a parent or something along those lines.  To be fair, I never heard the story from my Grandmother’s perspective or whether she did take on a conversation of that nature.

So, it was 2008 and she lost her “good” vision.  We were all in a state of panic.  I was living in New York at the time and trying to coordinate major things for her from that distance was difficult, at best.  We found what was described as a study at West Virginia University.  They were testing various medicines that could be shot into the eyes of diabetics and her glaucoma doctor noted she would be a good recipient of such a new process.  She was immediately sent to Morgantown to receive treatment.  The conversations I had with her leading up to the treatment were heart wrenching.  She struggled with the thought of a needle being put into her eye.  I struggled too because, after speaking with the doctor, there was no guarantee that her vision would be restored or, if it was, to what degree it could be brought back.  After the procedure we had good reports that the process was a success.  She was released, patch on her good eye, to go home and follow-up with her local vision specialist.  In the end her vision was restored to (almost) its original clarity.  She would not return to reading as habitually as before, but at least she was able to see our faces, skim the newspapers and watch her programs.

Recently I have been having trouble with my vision. I am terrified when my vision blurs.  We are trying drops multiple times a day and I am currently waiting for a second set of lenses for my new glasses (fingers crossed).  When reviewing my vision history, I mentioned to my doctor that Ma had macular degeneration and I always think of that as a worse case scenario. I then told her of Ma’s trip to Morgantown and how she always wondered the outcome of the study she was thought to be a part of.  My doctor told me that because of brave people, like Ma, there is now a routine treatment plan for people who have lost vision because of diabetic macular degeneration.  It filled me with a sense of pride.  Then I thought, I want to know more.  So I reached out to WVU to see if they had any information regarding Ma’s case in particular.  I received the following reply:

**********

From: Leys, Monique
Sent: Monday, July 23, 2018 2:08 PM

Dear Mrs Dolin,  I reviewed your mothers chart, only one letter was available to me, and could only find evidence of several visits with Dr Charlton, our glaucoma doctor and a letter from Dr Miller who was the retina fellow. Both retina doctors since then left WVU. I understand that your mother suffered from  proliferative diabetic retinopathy. From a letter written 7/9/2008 I gathered the following information ”She underwent several sessions of partial photocoagulation as well as an injection of Avastin with excellent results in the right eye”. I did not see any reference to a study in that letter.

Avastin has been used in the eye since 2005 , initially intravenous and then intravitreal for exudative age related macular degeneration. Later for diabetic retinopathy and for about 50 conditions that have to do with retinal leakage or new vessel formation.

It was very nice of your mother to allow us to use an off label medication and I am glad that she did well with the medication. To this date we benefit from intravitreal avastin and we are grateful for the many patients we have treated many years ago to give us some insight and experience with the medication so we can use it with confidence. Sincerely Monique Leys, MD Medical Retina

**********

I wish Ma could have known these things while she was alive.  To know that through her fear and pain she was able to withstand a scary treatment that helped countless others after her.  I am immensely proud of her.

There were three telephone conversations during the forty eight hours after the procedure that give me a chuckle to this day.

Conversation one:

Me: **Answer phone** Hey Ma!

Ma (in very low whisper): They are freezing me Chelle. I have begged for blankets and they laugh at me. They refuse to give me more blankets.  I only have this one flimsy one.

Me:  Ok, I am going to call back, don’t answer the phone so Daddy will pick it up in the shop.

**Dials the number**

Alex answers

Me: You guys need to give your Mawmaw more blankets.  She is freezing and she thinks you are withholding blankets.

Alex:  She has like twelve on her.  There is a pile of blankets and sheets and afghans on her.

Me: Oh

 

Conversation two:

Me: **Answers phone** Hey Ma!

Ma (crying hysterically):  I have been thinking. (pause sob)  It has to be hard being my only child and having to make decisions for me all by yourself.

Me: I have Daddy to help with those.

Ma (sobbing harder):  LISTEN TO ME.  I know it has to be hard to make decisions all by yourself.  So I have been thinking that when you get old it will be hard on Amanda and Alex to make the same kind of decisions with only two people. (sob. gasp for air. moan/sob)  So, I think you should have two more kids.  That way, your problems can be divided by four and easier to bear.  (sob sob sob)

Me: Ma, I had a tubal ligation eight years ago.  I have been a non-reproducing woman for eight years.  I cannot have any more kids.

Ma:  But if you try harder maybe you can.

 

Conversation three (two parts):

3A – 10AM

Me: **Answers phone**  Hey Ma!

Ma (calling from her house):  Your Dad says they have a great restaurant on the fifth floor.  You should come meet us for lunch.

Me: (puzzled but having already experienced multiple drug induced conversations at this point decided to just go with the flow)  Ok Ma, I will meet you on the fifth floor for lunch.

3B – 1PM

Me: **Answers phone**  Hey Ma!

Ma:  You are a horrible child. Ungrateful. Your Father and I waited for you for lunch.  We went out of our way.  And, for what?  You to no-show?! I hope you are pleased with yourself! (slams phone down)

Me:  **Rings Dad**  Hey Daddy!  Is Ma in her bedroom?

Dad:  Yeah, why?

My parents house had only two levels.

 

If you did not realize that she had an issue, you would never know while talking to her that she was blind in one eye.  But knowing, when you look at her pictures you then realize she had issues with her left eye.

3 replies »

  1. As a diabetic who is also genetically at risk for macular degeneration I’m very grateful for what your Ma did.

    We had some problems with my wife’s grandma when she got older she had a lot of trouble hearing. If spoke loud enough for her to understand what was said she claimed that you were yelling at her. I guess that’s pretty much normal for most families with an older person.

    • I have nerve damage in my left ear. Constant white noise. Some days louder than others. Ma used to say I was deaf in one ear and couldn’t hear out the other. I cannot imagine what that issue will develop into as I get older. Ha!

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