Sunday, February 8, 2015

IF There Had Been A Vaccine ... How Rubella Impacted My Life

In the past few weeks, there has been a growing debate regarding vaccinations for Mumps. Measles and Rubella (German Measles). The vast majority support immunization but there is a vocal minority who feel that there is a greater risk of harm from the vaccine itself than benefit and therefore are reluctant or refuse to immunize themselves or their children.

I'm sure that those who are opposed have what they feel are solid reasons for not getting immunized.

However, today, I'd like to share how Rubella impacted my life.

I was born in 1957 - a couple of years before there was a connection between Rubella and birth defects. This was also many years before a vaccine was available.

My mother contracted Rubella in the first trimester of her pregnancy with me. Doctors were unsure of what affects that would have on the baby but mom never considered abortion. It wasn't really an option at that time.

I was born with cataracts in both eyes. These were removed in two surgeries between the ages of 18 months and 2 years.. My left eye was the stronger of the two, but even it was very limited. I couldn't control the movement of either eye but especially the right one - despite having surgery to minimize the rolling/wandering of it when I was 17. Peripheral vision and depth perception have always been extremely limited. I was never able to see well enough to get a driver's license. In 1990, I suffered a detached retina in my good eye and became legally blind. Not long after that, I also learned I had glaucoma in both eyes. I've had more than a dozen treatments/surgeries to save the sight I have left and will be on medications for the rest of my life. (A more detailed 3 part blog on my vision loss can be read starting here)

I've worn glasses since I was about a year old. The glasses of my childhood and teen years were thick, coke bottle like lenses. I still didn't see very well and had to sit at the front of the class to see the blackboard. Teachers often had to help me with printed matter as the texts weren't always large enough or dark enough for me to read.

I was teased mercilessly - not just for my eyes and glasses but often seen as a teacher's pet. My eye hand coordination was poor and my participation in any sports or phys ed programs were torturous and humiliating - not just the performance but the teasing and sometimes unforgiving instructors who never took my limitations into consideration.

Another affect of the Rubella was that my teeth were rotten and crooked. I saw many dentists in my early years. One of which wouldn't allow my mother into the room with me. I was about 4 at the time and was terrified of all the equipment and the noises. I didn't want strangers touching me and making me gag so I squirmed. The doctor was impatient and slapped me for not sitting still. Of course I screamed even louder and still have a deathly fear of dentists! My mother always regretted not finding a way to report that doctor but there wasn't really a way to do that back then. Despite that horrid experience, I had all my teeth capped as a child. My parents tried to get braces for me when I was a teen, but I couldn't tolerate the procedures to get cleanings or x-rays - let alone get a plaster cast made! My teeth are still rotten and I probably should get them all pulled. I know dentistry has changed a lot in the last 50 years but I'm still terrified.

My bladder was another issue. It was about 1/2 the size it should have been, but I had to wait till I was an adult and fully grown before the doctors could do anything about it. If I wanted to go to a sleepover, I had to either take a medication or sleep with plastic under the sheets. Neither were great options for a kid. The condition improved somewhat in my late teens but when I was in my early 20's I finally sought treatment to enlarge the bladder. It was gradually stretched during several treatments over a few months. To this day, I am still prone to occasional burning urination and/or mild bladder infections if I am not careful.

My metabolism has never been great - regardless of diet or activity. I've been on thyroid medications since I was about 19. There are also some allergies - both environmental and food - that can cause some breathing and stomach issues.

When I was about 12 or so, I had what doctors believed was an epileptic seizure. Despite numerous tests, it was never definitively proven but I was still placed on medication to prevent another one. I was finally weaned off of it in my late 20's and never had another episode.

The toe beside the big toe on my left foot was a hammer toe. It made finding shoes a challenge. At 19, I had the toe partially amputated. It made finding footwear much easier but I have to have my toenails clipped by a trained nurse due to my low vision and susceptibility to ingrown nails.

Thanks in large part to my eyes and teeth, my overall appearance wasn't/isn't that attractive. Strangers of all ages steal pained glances or awkward stares. I've been called a freak and many other hurtful names. None of which did anything to improve my own self worth.

In a strange way though, my outward appearance protected me. It taught me that only those who were sincere would ever take more than a passing glance or the time to know who was on the inside. Even so, I'm thankful that I grew up in a time before social media. I've never posted or consented to a picture of myself being put on line. It has been hard enough living with the comments to me and behind my back over the years. I can't imagine subjecting myself to the all too often cruel anonymity of cyber comments.

I didn't have many friends growing up. The teasing even came from those who claimed to be my friend. I learned the hard way not to trust people. I rarely opened up to anyone until my late teens and early 20's. It was lonely but not worth the emotional pain of being betrayed or publicly humiliated.

In many ways, I got off lucky. The Rubella could have caused much more severe damage. I could have been even more physically disabled or even brain damaged.

My parents were well aware of my medical issues but I tried to keep the emotional ones from them - especially from my mom. She always felt a degree of guilt for inadvertently causing my health issues. I never blamed her for it. There was nothing else that she or my dad could possibly have done. They - and my whole family - were extremely supportive and did their best to help me whenever they could.

As a teen, my mom revealed to me that during one of my cataract surgeries my heart stopped. The doctor never told my parents until a few months later as he didn't want to frighten them. I don't remember the reason my mom told me but she stressed how thankful she was that I was still with them.

I never told them this - and hesitate to admit this even now - but I'd be lying if I said that there have never been times that I wished they'd never started my heart again.

My life has not been easy but this is not meant to be a "pity me" story. I didn't have a choice in the hand I was dealt, but I do my best to stay positive. I have survived and am stubbornly independent. Despite the wonderful (often expensive) advances in assistive technology, there are always daily challenges to deal with. I have a small circle of very close, trusted friends and a wider circle of casual friends. It takes a lot to earn my trust but I've also learned to trust my instincts. I find solace, inspiration and strength in music. I express creativity in cooking and baking. Writing allows me to express my thoughts, opinions, beliefs and experiences.

As someone who has lived with disability their entire life, I could never wish it on anyone else. It is stressful, emotionally, physically and financially exhausting!

I try not to dwell on the past or the "what may have been". However, there are times that I can't help but wonder what my life would have been like IF my mom had not gotten Rubella or IF there had been a vaccine back then...  What would I be able to see? What would it be like to live without disability? Would I have been better at sports? Find a career/long term employment? Be financially independent? Had more friends? Would I still have been ostracized?

I'll never know the answers to those questions or many others but I do know that my mother did everything she could to protect her fetus and me as a person. She would never have hesitated to get the vaccine had it been available at the time. She'd have assumed my physical issues herself if she could have.

My experience is the result of Rubella. The current outbreak and discussions center around Measles. The MMR vaccine covers Measles, Mumps and Rubella - all three highly contagious diseases can cause life altering changes and disabilities to those who are unvaccinated.

The MMR vaccine is 97% effective in preventing Measles, Mumps and Rubella. Fears of long term disability due to vaccine have been widely debunked. NOT getting the vaccine leaves you at a 90% risk of getting those preventable diseases if exposed.

As well meaning as the anti-vaccine people profess to be, I believe they are being selfish and irresponsible with their lives, their children's lives and the lives of those who are truly unable to get a vaccine due to medical reasons.

I fear for the unvaccinated and their offspring. You can't foresee the future. Regardless of what you do to protect yourself and your children, you can't stop them from living. You can't live in a protective bubble. Life happens. Your choices affect more than yourself.

Could YOU live with the consequences?



colleen Walker said...

Thank you for that very informative blog. I feel a little speechless and tearful after reading it. You have proven to be a strong woman and have overcome to a degree, the sadness, fears and disabilities you grew up with. (sorry i haven't really worded that right). You can still feel the pain but you have risen above all of that and lived an independent and meaningful life, finding things to replace what you missed.

I'm proud to know you and i'm proud of you. <3

Leila said...

What an amazing story! You are such an example of strength and courage. Thank you for sharing. I am going to pass it on!