Why We Walk to Defeat ALS: Team Tammy Hardy

After a six-year journey with ALS riddled with highs and lows, our beloved Tammy lost her life at the age of 39. Yep, 39. You might be thinking, “man, that’s young.” You’re right. It is. Tammy left behind a family and many friends who adored her. For the ninth year, we will once again come together as Team Tammy Hardy in the Walk to Defeat ALS. This is why.

The three voices in this article are those of Tammy’s sisters and her significant other. We share many of the same reasons for walking, including the strong bond we have with each other. ALS didn’t forge that. Tammy did. And it’s a bond that grows stronger each day. Team Tammy Hardy was in place before, during, and after her illness, and we will continue to carry on in her name.

Kelly (Tammy’s Sister)

Tammy was my big sister. She was eleven years older than me, and in many ways, like a second mother – nurturing and fiercely protective. She had the kind of voice you never tired of hearing; a wide smile and laugh that rang like music; and a light in her eyes that I swear must have shown directly from the kindness in her heart. This may sound exaggerated. It’s not. That’s really the kind of person she was – extraordinary. She made you better just by being around her.

Tammy lived her years to the fullest despite ALS. In her own words, “I may have ALS, but ALS does not have me.” But, Tammy was not done living. She didn’t get the chance to be a mother or a grandmother. She didn’t get to meet her nephews. Nor did she get to watch her niece grow. I’m still angry about this, but Tammy never was. She exuded grace and understanding throughout her illness.

Tammy continues to be my role model. I walk because it’s what she would do – not for herself but for every other patient and family. I walk for the thousands of steps she didn’t get to take. For every missed holiday, birthday, and phone call. For all the hugs and kisses she won’t be able to give my son (and there would have been many).

For those suffering from or caring for someone with this wretched disease, I walk. I walk to raise the funds to help you live longer and fuller lives. I walk in hopes that, unlike Tammy, none of your precious moments are stolen.

Keri (Tammy’s Sister)

ALS should be a 4-letter word.  It is still a wonder to me how something many people have never heard of can impact so many lives.  I really cannot imagine a more horrendous disease.  It is the equivalent of being buried alive, drowning, and starving to death simultaneously and all for an extended period of time, even years.

Words cannot even begin to express the admiration I have for my big sister Tammy.  She was happy, healthy, witty, full of spunk and personal style, and an avid runner.  She loved Cardinal baseball, going out to dinner, having cocktails with friends, and travel. She loved to travel.  We made travel plans often; New York, Chicago, Boston, and Las Vegas.  I have actually lost count of the number of trips we made to Vegas, and there was always somewhere we wanted to go.  Before ALS, I had envisioned we’d be senior citizens still traveling together until our bodies just couldn’t any longer.  Never would I have imagined that we’d barely be in our 30s when that happened.  I remember her once saying, “We better plan that trip to New York while I can still walk.” Thankfully, we took that trip, and were even able to squeeze in a few others after that with the help of a walker and a motorized scooter.

I feel one of the most devastating things about ALS is the prognosis: lack of medications and no cure.  It is excruciating to witness someone suffering with ALS. There is little to no hope and loved ones are often left feeling helpless.  All you can do is help them to lead as normal a life as possible. This requires a lot of equipment.  For Tammy, this meant a stair lift, a walker, a scooter, a motorized wheel chair, a ramp van, a lift chair, a remodeled bathroom to accommodate her lack of mobility, a few cleverly invented devices, and round the clock man power.  Unfortunately, not much of this comes easy or cheap.  So for me, this is why I walk.  Of course I hope that the money raised will lead to research and a cure … but also the countless other things that may help someone suffering with ALS to have some sense of “life as it used to be” and maybe, even one more trip to Vegas.

Scott (Tammy’s Significant Other)

Let me tell you a few of the (many) reasons why I walk.

I was pulling into Dutch Bros. coffee (www.dutchbros.com), a lovely little drive-through coffee place that dots the Pacific Northwest, when I noticed the sign. It was a fundraiser, they were donating proceeds of coffee sales, and I was several days too late. But what I noticed first, and mostly, was the fundraising was ALS-themed. The barista explained that one of the founding brothers (of Dutch ancestry, not named Dutch) had lost his battle with ALS some years before. And with that, a flood of memories (perhaps a latte memories) came roaring back.

Tammy was a coffee connoisseur. And every morning, regardless of whatever else was on the agenda, coffee was at the top of her to-do list. As her disease progressed, she rigged a setup that provided her easy access to her coffee. Even though she had to sip it through a straw, no matter. It was coffee. It was good coffee. A little creamer. In her Eeyore insulated cup. Coffee was one of those little pleasures that brought an instant of normalcy to an otherwise quasi-normal existence. If you were there with her in the morning, your first action was to get the lady her coffee. And like Jules says in Pulp Fiction, it was the gourmet, er, stuff.

Wine provided another little moment of ordinary in extraordinary circumstances. And yes, she used a straw for that, too. But it didn’t matter. For her, it was a connection to enjoying life, no matter how the disease had ravaged her body. It was also a common bond for us, something to discuss, something to enjoy together, something that we could share outside of the caregiver/patient idiom. Besides, no way was I ever going to watch American Idol!

There’s a picture of Tammy, with her breathing apparatus all hooked up, holding her niece as an itty bitty baby. You can see the light in Tam’s eyes, the sheer joy, the happiness, that this little creature created. As it turns out, we ended up with the greatest niece and the three greatest nephews in the world. My niece is now old enough to ask questions about her Aunt Tammy. That she won’t know her, or be spoiled rotten by her, is incredibly difficult to bear. Soon, the nephews will be asking those questions.

For me, Tam was my partner, friend, and comic foil. Ultimately, I walk to honor Tammy’s brave struggle, her incredible poise in dealing with ALS, and her resolve to find, and live, normal and ordinary. I walk for others facing the struggle. I walk so that one day, no one will have to face these struggles. And I walk for my family, to honor them, to support them, and to share in and pass along the joyous memories of a life too short but fully lived.

You can support people with ALS and their families and the search for treatments and a cure by joining the Walk to Defeat ALS in Forest Park on Saturday, June 24th. For more information or to register, click here.

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