Guest Post: This is The Fight of Our Lives

By Aaron Behnke

Note: In recognition of ALS Awareness Month, we’re sharing stories nearly every day in May about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the ninth profile in that series.

My name’s Aaron, but my friends call me “Bankz.” I’m a 39-year-old husband to Abbie and father to seven-month-old Lincoln.

It was a real shock when I received my ALS diagnosis less than six months ago. But now that I’ve had some time to let things sink in, it’s time to make some noise.

So “Team Bankz” is fighting to learn more about ALS and educate everyone who wants to learn. And we, along with other ALS Advocates, are fighting to make sure everyone affected by ALS can live a happy and rewarding life.

We’re fighting to bring hope to each person with ALS facing this battle. And we’re fighting to create opportunities for our friends, our families, and our communities to get involved in the search for a cure.

Who I Am

I consider myself a grown-up small-town kid who loves being outside hunting, downhill skiing, playing softball, or teeing up for a round of golf. I could spend countless hours getting lost in the woods. I’ve lived in Wisconsin my whole life and love it.

Abbie and I met 10 years ago at a bar where she bartended. We’ve been married for six years and, after trying for years to have a child, we were blessed with the birth of Lincoln in September 2017.

In the summer of 2016, I noticed some weakness in my arms. In May 2017, I went to the orthopedic surgeon for the weakness and physical therapy was suggested. After that, I spent the summer having numerous tests and was eventually referred to Froedtert and Medical College of Wisconsin in Milwaukee, where I was diagnosed in December 2017.

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How I Fight

This disease takes so much away from people and they just disappear. That is not acceptable.

I feel the reason medicine hasn’t progressed is because not enough noise is being made about this disease. As poet Dylan Thomas wrote, “Do not go gentle into that good night. [….] Rage, rage against the dying of the light.”

Just last week, I headed to Washington, D.C., with Abbie and Lincoln to tell my story and advocate on behalf of people like me — people with jobs, families, and hobbies who are fighting against ALS. This is the fight of our lives and we let it be known that we won’t be quiet about the urgency this terrible disease requires.

When I was meeting with my Wisconsin government officials, I said, “I want to throw a baseball to my son. There’s a 50 percent chance I’ll never be able to do that.”

I pressed those members of Congress to waive the five-month wait for Social Security Disability Insurance. And I let them know that, in whatever time I’ve got left, they’re going to know we were here.

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What You Can Do

My advice to people living with ALS is to not give up. There are many new studies and treatments underway and I feel a breakthrough is not far away. I’m currently participating in a clinical trial through Froedtert, where I receive treatment. (I also receive treatment through Bay Area Medical Center.)

It’s time for you to suit up and join this fight with me. If we flip over enough rocks, we can find a cure.

Maybe we can make enough noise to make sure no one else has to go through this. I’m going to leave my son something he can be proud of.

The squeaky wheel gets the grease. So, won’t you Raise Your Voice with me?

In honor of ALS Awareness Month, please Raise Your Voice to elevate the fight against ALS for Aaron and all people living with the terrible disease.

Update your Facebook profile with the ALS Awareness frame. Contact your representatives in Congress. Recruit your friends to like our Facebook page or follow us on Twitter. Promote a fundraiser. Host a fundraiser. Register for a Walk to Defeat ALS or a Team Challenge ALS event.

Raise Your Voice however you can. Together, we will be heard.

One thought on “Guest Post: This is The Fight of Our Lives”

  1. Thank you…..I was diagnosed last aug….my mom had it.her mom had it….no new solutions since them 2 having it….cancer has had alot of advances….praying for cure

    Like

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