Friday, February 5, 2010

Heroes Among Us--Linda

Dedicated to those of you who face a debilitating disease head-on, each and every are a hero.

Do me a favor. Drink a double-shot of vodka. Now, hold your arms out to your side and spin around for two minutes. It doesn't feel good, does it. The blurry vision, the slurred speech, the difficulty walking, the loss of coordination. Now, imagine that these symptoms will never go away. In fact, they'll only get worse. Every morning when you wake up and every night when you fall asleep, these symptoms will grab you and shake you, reminding you of your reality. They will become your constant companion.

Welcome to the world of Friedreich's Ataxia. A world of disappointments, of walkers, of wheelchairs, of harsh symptoms that will progress. A world where ever so slowly, your nervous system will rob you of your most basic functions. And your pride.

And welcome to Linda's world. An amazing world filled with a husband who adores her, a demanding yet accommodating job, and two happy, well-adjusted kids. A world of simple, fulfilling country living. Complete with chickens.

Today, you have a front-row seat of these two worlds colliding.

We first met Linda and her husband, Andy, in 1996, when we lived in upstate New York during my residency (refer to The MoooooER). A new marriage and work-transfers brought them our way. While we lived in a new three-bedroom house that sat smack in the middle of a cow pasture, these two brave souls bought a 100 year-old fixer-upper across the road. A house the realtor initially drove past, without stopping, figuring not to waste their time. Wrong! This house became their labor of love. And we had neighbors!

Soon after arriving, they decided that Andy would stay home and pursue his higher calling, establishing a software business. Linda continued to work hard and travel hard. She relaxed easily enough, though, and their simple life on our country lane was unmatched. I must admit, I still get a twinge of jealousy thinking about the life they continue to lead, a life we left behind.

Anyway, we enjoyed our new neighbors immensely. Linda was, and still is, bubbly and funny, strong-willed and caring, with a wicked sense of humor. Andy was, well, a pervert, but an awfully nice one at that. He made the perfect sidekick, sitting back and letting his vivacious wife shine. And shine she did. She was infectious. We would play a board game or two, enjoy drinks in front of their huge stone fireplace, and share a lot of laughs. Laughs that led to sore morning faces.

Several of our favorite stories? Easy. Linda, teasing farmers from miles around, would wear an itsy-bitsy bikini while she cut their lawn on a big John Deere mower. The farmers would drive their rusty pick-ups back and forth, hoping for a glimpse of her as she bounced over the molehills. On purpose, I think. I should have sold tickets for a front-yard seat.

And when my wife got pregnant with our first child, that was Linda knocking on our front door, holding a bag of her maternity clothes. Among them, a size 44 Kmart dress that she had worn after adding nearly 40 lbs. (with Brian) to her size 4 frame. Neither of us could picture it, but Linda swears she was sexy as hell in that threadbare, cotton tent. "Wasn't I, honey?" she asked Andy, who's answer consisted of wiping the drool from his mouth. We told her to keep the five-inch matching pumps.

Life was very good. Two beautiful smart children, Brian and Kelly, a dog, a cat, rabbits, chickens, a beautiful, remodeled home, a simple yet fulfilling country life. The circle seemed complete.

But then...

In her late thirties, Linda began to notice strange symptoms. She would slur her words, stumble for no reason, and be clumsy in the kitchen. Soon, walking took actual concentration instead of being an unconscious activity. Just imagine her thoughts. "Okay, now the left. Now the right. Now the left..." How frustrating for someone so independent and in-tune with her life!

Even more frustrating? Her lack of a medical explanation, despite numerous tests. Finally, in 2002, genetic testing provided their answer. At age 40, Linda was diagnosed with Friedreich's Ataxia (FA).

Briefly, FA is a progressive, debilitating disease that affects 1 in 50,000 people. Havoc is caused by a single gene mutation on chromosome 9. This mutation affects nervous system function, resulting in muscle weakness of both the arms and legs, loss of coordination, vision and hearing impairments, slurred speech, and extreme fatigue. Diabetes and heart disorders occur in extreme cases.

How would you react to such news? Could you imagine your life after such a diagnosis? Would you ever uncurl yourself and get back out of bed? I'm not sure I could. A simple damn gene mutation! Imagine the disbelief and hurt that Linda and her family had to work through. And those kids? Bless them and their young, innocent hearts. Their family's pain could have been our pain but for the luck of the draw.

Well, let me proudly say this. Linda is no shrinking violet. Hell, no! She never was one. Why would she become one after her diagnosis of FA? Whereas some people might have let a debilitating disease like FA back them up against a wall, Linda came out swinging. Her life, her marriage, her family, her kids--she had things to do, people to love, children to raise, a husband to adore. She had life-lessons to teach, all in the face of adversity. Grace under fire. There would be no pity.

First things first. Linda did not change her life for FA. Or her family's life, for that matter. FA would simply have to fit into their life, and the symptoms and progression of the disease would be dealt with as they came along. On her terms.

Linda did not quit her job. In fact, she took on a new position that required her to travel extensively. Often, her family accompanied her. She opened the doors of Europe, of the Pacific Northwest, of the world, actually, to her children. Something that was very important to her.

Linda and her family did become part of the FA family, a remarkable group of people who have empowered themselves to find a cure for FA. A favorite effort of theirs? Ride Ataxia. Established in 2007 by Kyle Bryant, it is a fundraising bike ride that covers hundreds of miles enroute to the National Ataxia Foundation annual meeting. Thanks to Andy, Linda rides a built-with-love, custom-made bike. And as a result of many of the FA families' efforts and fundraising, there are seven new drugs being researched, in various stages of trials, for FA treatment. A few short years ago, there were zero!

How is Linda these days? She is just fine, if you ask her. Walking can be difficult, and there are times when she needs a wheelchair. She gets tired quite easily, too, but you won't hear her complain. Her coordination and speech are a little for the worse, but the gleam in her eyes shines brighter than ever. Especially when those eyes are focused on her children. High heels, biking, running, skiing, climbing stairs--all these things have been lost and mourned. Linda's essence, her beauty, her bubbly nature, and her love of life and family, however, remain. They will not be lost in the murk of FA.

And how is her family? Of course they have their days, but they know they are living with a hero--someone who's mantra, as quoted from Abraham Lincoln, is "And in the end, it's not the years in your life that count. It's the life in your years." How incredibly blessed are they to have such a shining spirit within their four walls?!

If we could all be so lucky.

Thank you, Linda, for showing the world such amazing beauty in the face of your illness. You, my dear friend, are one of my heroes.

Even heroes need to be reminded of how special they are. Please, please take a moment and email Linda to wish her your best. Big thanks. As always, thanks for reading. Next post will be Monday, February 8.

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Rositta said...

What an amazing story and what an amazing woman. Your right, she is a hero. I doubt very much that I could be that graceful living with something like that,hell I whine enough as it is over something as benign as RA. I know about Ataxia as it was briefly mentioned to be in regard to my late mother but she was never tested. Have a lovely day...ciao

Jacqueline said...

seriously needed that this morning...thanks...and thanks to Linda for being an inspiration to us all

DownDoggin in MN said...

That was beautiful, thank you for sharing.

Marie said...

As usual, a beautiful and moving portrayal that tells as much about your compassion and humanity as anything else.

Thank you. :)

Memune said...

Thanks for that, it came at the perfect time, as I was just dx'd with a flare of lupus yesterday. Reminds me that it's the "fight in the dog" that matters. With something like FA or SLE, it's only a life ending dx if you let it win.

I needed that. Best to Linda.

Stephany said...

My daughter is my hero, and I voted for your blog at Medgadget.

Katie said...

We've got some former neighbors also dealing with a debilitating disease. I'm sure watching their strength and unwavering faith is not unlike watching Linda and her family continue their lives despite a devastating diagnosis. It's remarkable to see because I cannot be sure I would be one of those people willing to get out of bed. Well done, Linda! I admire your solid determination.
<>< Katie

Dick and Sheila Smith said...

Linda. Your energy and enthusiasm in everything you do is contagious and you are an inspiration to all who know you! We are so proud you are our daughter. Love, Mom and Dad

coulrophobic agnostic said...

That's incredible. I couldn't be that strong.

Omega said...

It is amazing she was not diagnosed till her 40s. Most people with Friedreich's Ataxia (FA) are diagnosed in their teens. I was diagnosed when I was 24. After meeting others with the rare, debilitating disorder I realize how lucky I am, comparably. I can still "stumble-walk" around my house but use a cane or walker - rollater (or a friend's arm) in public. In December, at age 28, I earned by BA in Psychology. I plan to start my Masters in January 2011. While FA tends to take a bit out of me every day - whether physical or psychological - I fight back. I am blessed with a wonderful and understanding fiancé, a loving family, and great friends. I try to live each day to the fullest, when I can, and continue to hope for an effective treatment or cure.

mommy-medic said...

Size 44 dress......

Linda sounds like quite the character!!!

I enjoy learning about lesser-known diseases. We ran a girl having a flair up of Sydenham's Chorea the other night, that was a great night to boost the ol brain power. Thanks for giving me something else to go google! :D

kristi said...

Wow, a classic example of not letting a situation knock you down.

Chris said...

Linda is everything described here and more...
When I was a new employee at our workplace, despite her challenges, she was the one looking out for me in new endeavors/countries! She's unstoppable.

SeaSpray said...

What a beautiful tribute to your dear friend. She is inspirational and one strong spitfire of a lady.

It sounds like you all had a blast together.

Did ya tip any cows? ;)

You would have to pull me from my fetal position underneath the mattress. I've had life on hold while doing the uro stuff ..even when cleared. I admire your friend Linda. :)

Kate said...

Wow. One single, unparalleled gene mutation on 9. I had never heard of this type of ataxia until I began reading your blog. I really thought I'd seen it all in my years of medical malpractice defense.