Wednesday, January 09, 2008

Final Diagnosis

Microsoft clipart of medical symbol

With three out of six kids with hearing loss, my parents were told that it was caused by ABO blood incapability. My father had A positive blood type and my mother had 0 negative.

My two oldest brothers were born “normal”. (Who’s normal? ;) ) When my oldest sister (R) was about three, my mom noticed something wasn’t “right”. By that time, child #4 was born (my third brother, J). My mom took R to a doctor. A diagnosis of mental retardation was made. The doctor said that R should be institutionalized. (This was the early 1960s.) My mom refused to believe it. R was bright-eyed and could tie her own shoes at the age of three. She was “all eyes” (curious, absorbing information).

She took R to different doctors. Finally, a doctor said that she was hard-of-hearing (HOH) and referred her to see an audiologist. The audie (short of audiologist) tested her and fitted her with hearing aids. My brother J was also tested. He, too, was HOH. The audie recommended intensive auditory lessons.

As I mentioned before, my two oldest brothers did not have hearing loss. Perhaps it was similar to the complications of Rh factor, so ABO blood incapability seemed to make sense.

My second sister W (child #5) was born with a high bilirubin count. She was immediately given a blood transfusion and had severe jaundice. If it weren’t for the blood transfusion, she would have had cerebral palsy.

When I was born (yes, I was the “baby”), the doctors were watching for complications. I had jaundice, too. The doctor, my mother said, did something "different" with me compared to what they did with my sister. I “ended up HOH”, too. I think because my sister wasn’t HOH after her blood transfusion, my mother thought that if I had one, maybe I wouldn’t have had hearing loss.
The jaundice had nothing to do with my hearing loss, though I can see why the doctor came to the conclusion. It wasn’t until we were in our twenties that we found out that the etiology of our hearing loss was from Usher syndrome.

I was already fitted with hearing aids when I was 18 months old. I didn’t talk much for an 18 month old. Once I started auditory lessons and started talking, my mother joked that I made up for lost time. I wouldn’t “shut up”.

Fast forward to our twenties…

I remember my oldest sister, R, coming home from college break and saying something about not seeing “right” in the dark. She and I were four and a half years apart. I didn’t really take too much stock in what she said. I promptly forgot about it.

She got married in her mid-twenties. A year after her wedding, she stopped by to tell my parents that she saw an ophthalmologist and he told her she had retinitis pigmentosa (RP). I was not used to seeing her on the verge of tears. She was my big sister, the tough one. She was not one to carry her emotions on her sleeve like that. She was the one who would face/make confrontations and was very outspoken. We had our differences while growing up. I admit I was afraid of her at times; she was so bossy and mean. At the same time, I admired her and looked up to her, too. It seemed like she had the Midas touch with sports and was very competitive. She was a big basketball and shot put/discus star. She excelled at everything. She was a master dart shooter, too.

We get along so much better now, but we don’t live have to live under the same roof, either. ;) (Love ya, sis. ;) )

I didn’t really get the whole story when she stopped by to talk to my parents that day. I do remember hearing her say, “I’m going blind.” Was she exaggerating? There was no family history of Usher syndrome.

I saw my dad kind of shake his head sadly, in shock. My mom didn’t say anything. That’s all I remember about that visit.

A few months later, my brother J was adding more lights to his pick-up truck. He was having a hard time seeing in the dark. He thought adding more lights to the truck would help. R told him to get his eyes checked. He, too, had RP. He was about 25 at the time...

Somehow, seeing that both R and J had RP with hearing loss, I wondered if I had it, too. I didn’t notice anything wrong with my eyes or anything at the time. I was paranoid. I thought that maybe there was a connection to the RP and hearing loss. (Imagine my surprise when there really was a connection.) After all, my hearing brothers and sister did not have RP. My hearing sister W worried about getting RP and had her eyes checked when she was in her late twenties. I told her that she wouldn't have it because she wasn't born HOH. That was the classic symptom of Usher syndrome Type II.

So I got my eyes checked. I was about 22. The eye doc didn’t see anything wrong. He gave me a field test and I was fine. I thought I was off the hook. Maybe I didn’t have to worry about it.

Over the next few years, I thought my eyes were playing tricks on me. (Now you see it, now you don’t.) It’s easy to tell yourself to look where you are going.

I thought it was a “sympathy” kind of thing…that it was all in my mind because they had it.

I got married when I was 24. I remember my brother J telling me about Usher Syndrome Type II. He gave me some papers on it. I read it disconnectedly. I was curious about it. I didn’t think I had it because the doctor said he didn’t find anything wrong. It was probably in the early stages so it wasn’t noticeable.

I started walking into things. I thought I misjudged the distance because I saw it before I walked into it, especially in the dark.

I finally went to get another opinion. Was it all in my head?

The doctor told me that I did indeed have RP. I guess I was not surprised, but I so wanted him to say it wasn't. I was about 28 at that time; I had a toddler and a full-time job. (This was around the time the profile picture in the sidebar was taken.)

It’s so easy to be in denial. Ignore the signs. Pretend it’s all in my head. It was safer than facing it.

I am not so much in denial anymore. It’s there, an ugly reminder every time I “miss” something.

Most of the time, I laugh about it, but sometimes I cry inside. It’s frustrating. I hold on to the hope that most people with RP retain central vision for a long time.

In the meantime, I just go day-to-day. That's all you can do.

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At Wed Jan 09, 07:06:00 PM , Blogger Beth said...

Thank you for sharing your story.
Laughing, crying, just going day-to-day - whatever you do and however you cope, you are a brave and "amazing" lady (as Jennee would say...)

At Wed Jan 09, 09:52:00 PM , Blogger lime said...

wow. i just can't imagine. thanks for the history and your honesty. you do seem generally to have a positive outlook and you do a great job educating those of us who read here, whether it means sharing factual information or how usher affects your life and your emotional state.

At Thu Jan 10, 09:37:00 AM , Blogger Amrita said...

you are a very brave girl Shari.
I got my problem because my parents are cousins. Mom
s mother and Dad 's dad were brother and sister.Its a family thing.

At Thu Jan 10, 10:05:00 AM , Blogger hillgrandmom said...

Shari, you truly are an inspiration. *hugs*

At Fri Jan 11, 09:08:00 PM , Blogger Shari said...

Beth-But we all have our own problems, whether physical, mental, or emotional. We all have a road to travel with the speed bums and hills.

Thank you, Lime. I wanted to share this so that people would understand what we do and that we are just like everyone else, too.

Amrita-Thank you. Wow. Thanks for sharing.

Hillgrandmom, thanks (blush).


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