Ingrid Ricks: Author Hippie Boy: A Girl's Story

www.hippieboybook.com

Ingrid Ricks

Ingrid Ricks
Location
Seattle, Washington, USA
Birthday
January 11
Company
www.ingridricks.com
Bio
Writer, dreamer and teen mentor. I recently published FOCUS, a memoir about my journey with the blinding eye disease Retinitis Pigmentosa -- and about learning to see what counts as my vision has faded. Available on Amazon and BN.com For more info, visit: www.ingridricks.com

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Editor’s Pick
FEBRUARY 15, 2011 5:28PM

Learning to See What Counts

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Going blind SUCKS.   So does walking into an eye doctor’s office for the first time in your life Learning to seewith trendy red cat-eye frames already picked out, only to be told that you’ve got a serious problem that no glasses – regardless of how good they look on you – are going to fix.

I was thirty-seven when I was diagnosed with Retinitis Pigmentosa, a degenerative eye disease that first steals your night vision, then knocks out your peripheral vision, then usually takes what’s left.  I should have guessed something was wrong when I sideswiped a car on the freeway after looking into the right lane and seeing nothing.  But it was dark and raining, and I chalked it up to that.  It wasn’t until I played racquetball with my husband a few weeks later and couldn’t score a point that it occurred to me something wasn’t right.

“You can’t chase the ball with your eyes,” my husband coached, acting as though I had never played before.  “Just pick a spot on the wall and watch for the ball with your peripheral vision.”  

When the ball whizzed by my head a minute later and I didn’t see it, my husband – who often commented on my tendency to bump into things – suggested it was time to get my eyes checked.  I agreed, figuring a cute pair of glasses couldn’t be all bad.

Even after the eye doctor gazed into the back of my eyes and quietly informed me that what he saw resembled a rare degenerative eye disease, I wasn’t overly concerned because I had gotten by just fine until now and figured if I did have RP – which he admitted he wasn’t sure about – I was in the very the beginning stages.  But I knew it was serious when I saw a nurse whispering about me to the retinal specialist my eye doctor had recommended, then heard my name called ahead of a whole roomful of patients with scary-looking eye patches, walkers and canes.

By the way they were acting, I was suddenly convinced I had a brain tumor – a possibility I had uncovered during the countless Google searches I had done in the week since my first eye appointment. So I was initially relieved when the ancient-looking specialist announced that I had all the classic signs of RP.  That is until he told me that I was already legally blind, asked me how I’d ever managed to get by on such limited eyesight, chastised me for waiting so long to get my eyes checked, and then propped me up like a monkey, trained what felt like a car light on my inner eye balls, forced my eyelids open and invited a string of residents to get an up-close look at an advanced case of RP.

“So what resources do you recommend?” I asked at the end of my torture session, rattling off the list of vision-enhancing nutritional supplements I’d found during my Internet searches.  Given that he was the RP expert, I figured he would be a wealth of knowledge.  Instead of counseling me on the best vitamin brands, he scribbled down the phone number to the Center for the Blind and shoved it into my hand.

“Here,” he said.  “I’ve yet to discover a vitamin or anything else that’s made any real difference with RP.  Medical help is at least twenty years out and it’s not likely to benefit you anyway.  I’m sorry.”

“What about driving?” I pleaded, sucking in my breath like a two-year-old.  

“You seem like an intelligent woman,” he said, already turning toward the door. “What do you think?”

I spent the next week huddled in my basement sobbing.  I mourned the vision I had lost, but mostly I cried because I was terrified about what awaited me.   I cried out of fear I wouldn’t see my two daughters, barely five and two, grow up.  I cried about lost future candlelight dinners with my husband and about the burden I feared I would become to him.  I cried because I couldn’t drive anymore and because I was scared I wouldn’t be able to work.  I cried over lost sunsets and ocean views and any other beautiful scenery or image I would miss out on.   I cried until finally it occurred to me that I could still see and that maybe, instead of mourning the unknown future, I should concentrate on Now.

It’s been seven years since I discovered that my tunnel-vision eyesight wasn’t merely a reflection of what friends have often joked is my tunnel-focused personality.  In that time, my vision has shrunk from a ten-degree to five-degree visual field – fueling a determined quest to halt the progression of the disease and preserve what precious eyesight I still have.  Having concluded that the retinal specialist was bad for my health, I’ve instead sought out every alternative treatment I can find.  I’ve changed my diet, I down Chinese herbs, I undergo acupuncture, I ingest cocktails of vitamins, I stare into a color therapy lamp, I pump electrical micro currents into my eyes, and I try to do daily eye exercises.

In a world of fading vision, I’ve encountered plenty of things to avoid.  They include coffee shops that allow dogs – one belly flop onto a hard cement floor amid a Saturday morning coffee crowd is enough; treadmills – flying off of one at six miles an hour hurts; stairs without rails, crowds, darkness and negative people.  

But I’ve also discovered there’s plenty to embrace.  Every day I look at my two daughters, now eleven and eight, and soak in their amazing beauty, their smiles, and their zest for life.  I walk a lot, which means I’ve gotten to know my Seattle neighborhood and the neighbors in it, and I’m in good shape as a result.  I eat better, have grown to love spinach, and even have my eight-year-old daughter craving salmon and salad.  I’ve learned to accept help from people who extend an arm when it’s dark, and

I treasure my friends who offer a listening ear and encouragement when I’m down but know that the words Seeing Eye Dog, White Cane and Braille aren’t in my vocabulary.  I’ve also learned that I have an incredible husband who doesn’t shy from adversity, that hope is power, and that living fully in the moment is the best defense against fear.

I’m still feeling my way around this world of semi-darkness.  During an evening party a month ago, I spent an hour talking with a woman, only to introduce myself to her a few minutes after we had parted ways because I didn’t realize we had met.  The next night, after tucking my daughters into bed and making myself some tea, I went searching the house for my latest issue of The New Yorker.  I rounded a dark corner too sharply, smashed into the divider wall, and cracked open my forehead – leaving an inch-long vertical gash extending mid-forehead to my eyebrow.  My husband cleaned up the blood and cinched up the wound as tight as he could with a bandage, then warned me I might not want to look in the mirror.

Gazing at my reflection the other day, I found myself lamenting over the fact that the new scar on my face wasn’t going away.  Then it occurred to me that the alternative was not seeing the scar at all.

That’s when I discovered something new to embrace.  Because every time I see the scar, I’m reminded to stay vigilant about doing everything I can to save my remaining eyesight.  But I’m also reminded to focus on what matters in life – my family, my friends, this moment.  And I know now that’s the vision that counts most.


 Ingrid Ricks is working on a memoir about her journey with RP.  Her agent is currently shopping her first memoir, HIPPIE BOY: A DAUGHTER’S MEMOIR, to publishers.  

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Seven years ago I walked into an eye doctor's office for the first time in my life and was told I was going blind. Since then, I've learned to see what counts in life.
Best wishes on your journey, Ingrid. Your story is such a courageous confession of the fears of all who deal with disease.
I'm always so in awe at the courage of people who, when confronted with such trauma, seem to rise above it all and, so to speak, make lemonade. In idle moments, I've asked myself whether I would react so positively if something like this happened to me. I'm not sure I would be so courageous.
Compared to you, Ingrid, I'm a freaking wimp!

And I salute your extraordinary husband and family. You're all saints!
Both my parents, one grandparent, and three aunts had Macular Degeneration, so I am pretty sure that I know what's in store for me. I, too, have tried to take a proactive approach, and so far my vision is still 20/20 (thanks to cataract surgery), but when the annual appointment with the optometrist rolls around, I go with my stomach in a knot expecting to hear the worst. I know someday I will hear the dreaded words, and I hope to face the rest of my life with your courage and optimism. Thanks for an uplifting story.
I admire your strength and positive outlook on life. Although this piece was excellently written, and because of that, it gives me chills. The thought of losing my eyesight is one of my biggest fears. Please keep us posted. We need your strength and wisdom.
This was so moving and yet so upbeat. I love your attitude. I think that's the most important thing: how we look at the struggle, not the struggle itself. Good luck to you and bravo for trying to take matters into your own hands, and, more importantly, for your positive thoughts and for sharing this with others.
Congrats on your Editor's Pick! I really enjoyed your story and wish you the best of luck in getting published. It reminded me that our bodies are fragile and so is life. I will give my kids an extra hug the next time that I see them.
beautifully written, arousing sympathetic fear that you show us what to do with, " that hope is power, and that living fully in the moment is the best defense against fear." thank you for sharing your story and the wisdom it has revealed to you. wishing you full aliveness in every moment.
Thanks for sharing your truth. I too would be unhappy to get such news. My parents had macular degeneration and I was told zinc helped. So I've been taking vitamins for my likely inheritance, and so far it has worked. But you might consider a service dog anyway. No more head scars, but an intelligent companion. More dogs are being trained and they are finding more uses dogs can handle. Just a thought. R
Ingrid, my father has RP. He had already lost most of his sight when I was born, and today he cannot tell if there's a light on in a room, something he was always able to do when I was growing up. It was my greatest wish that Dad would someday find a cure and regain his sight. In our teen years, my younger brother and I were closely monitored for symptoms of the disease but both of us remain in the clear. My brother has a five year old son, and we are watching and waiting with him.

As an adult, I can see (pun intended) that my father has an extremely good life and has worked hard to maintain a stable home and a job that was safe from the whims of a discriminatory employer. I think his disability (and it's hard to imagine he is disabled from a daughter's perspective) pushed him to go a bit farther in all things.

He met my mother when she began reading textbooks for him. They fell in love and married, and eventually both completed their PhDs in psychology. Mom taught cognitive psychology (learning, memory, etc.), while Dad taught statistics and computer applications in psychology. They both had a long and fruitful career from which they retired fairly recently. They raised two bright and relatively happy children, kids who never wanted for any food, shelter, or clothing.

My father learned to play mandolin and plays small gigs here and there nearly every week. His skill is outstanding. Mom took up guitar and plays quietly as she hasn't Dad's skills in music, though she never stops trying. I later learned that blind people often have extraordinary musical abilities. Think of all the blind musicians you hear all the time; Ray Charles, Stevie Wonder, and Jose Feliciano are just a few that immediately pop into my head.

From what I was told, it is rare for RP to start so late in life as it did for you. It gave you a lot of time to establish yourself in marriage and a career, time that Dad just didn't have. It's also quite rare for it to appear in females, though it is not impossible, obviously.

Recent news on the subject of RP has suggested that we are close to being able to implant computer chips that take the place of degenerating retinas. Stevie Wonder was part of an early trial of these experiments.

My years of wishing Dad could regain his sight are long gone, however. Sight is not needed or wanted any longer. I have read that among people who have lost their sight only to have it return some years later indicates that the adjustment back to sighted living is far from easy; many people find it overwhelming and wish it had never returned.

I feel a little foolish now wishing as a child for a thing that my father did not want or need. He already had everything.
BTW, congrats on the EP and Open Salon cover on your very first blog post here. That's quite an accomplishment.
Years ago I was a Schwan's Ice Cream man. One of the people that I sold to was blind. He lived alone. He cooked, cleaned and everything else a person would do. He did have a few aids to help, but what he did was surprising.

One day I knocked and opened the door as normal. I heard him call for me to come down to the basement where he was finishing installing a hot tub. By his self.

I guess when you have lots of lemons, you learn to like lemonade.
"By his self."

typo?

ROTFLMAO
Rated and a great story. Here in Okinawa, an american bilingual professor gradually went blind from macular degeneration.

He managed to take a bus to work, knew the routes to his classroom and cafeteria from memory and didn't need a walking stick.

He was a GREAT inspiration to teachers and students.
Inspiring, Ingrid! Fabulous essay and you write so beautifully.

I had major vision impariments from a brain aneurysm that required surgery in one eye, and months to heal on its own in the other. It's scary how it much we depend on our sight and take it for granted. But you clearly do not, and I love the way you're embracing every day by living in the moment and being thankful for what you have. You go girl!
This was so moving. I love your attitude. Welcome to OS - I just read your second post first and am very much looking forward to more.
Thank you all for the inspiring comments and stories here. What I'm learning in spades is that a disability is only a disability if you allow it to be.

Thank you!!

Ingrid
Thank you all for the inspiring comments and stories here. What I'm learning in spades is that a disability is only a disability if you allow it to be.

Thank you!!

Ingrid
Extending two arms---to embrace your work. Beautiful.
I was diagnosed with rp in 1992, after 3 fender-benders in 3 months. I haven't driven since, am blind in one eye, and have about 3 degrees in the other. My sons are wonderful, supportive - and grown and out. I am also divorced. I went to the Seeing Eye in Morristown, NJ for my first Seeing Eye dog in 1994, and am about to get my 4th. Other than having the dog and no longer driving, I try to live my life as much as it "used to be" as possible. Good luck, Ingrid. This thing is doable!
Thanks for sharing your story with my Tireias75. I'm definitely inspired by stories like yours. And I'm going to do everything I am to just keep living life in the moment and not letting this vision thing take me down.

Best,
Ingrid