I am Shelly Hoover

a U.S. military veteran living with ALS

North Carolina

I have precious little control over my diagnosis and how it has left my body like Raggedy Ann’s. I can control how I respond.

I’ve always been proud to have served my country in the United States Navy.  At 17, I brought my enlistment papers home and asked my mom to sign them. 

I joined the Navy to see the world and spent five years in Norfolk, Virginia. I was able to finish my undergraduate degree and met and married my husband, Steve. That was 36 years ago.

We raised our children, David and Lacey, in the Sacramento suburbs. I taught in the public schools and later moved into school administration. I earned my doctorate in education, had my dream job, and was in the best physical shape of my life. In 2012, Steve and I found out that we were going to be grandparents. Then, I began losing my balance, followed by a year of fruitless diagnostics. 

In 2013, at the age of 47, I was diagnosed with ALS and told to get my affairs in order. To quote my favorite movie, Shawshank Redemption, I had to get busy living or get busy dying. I chose to get busy living. 

US military veterans are more than twice as likely to be diagnosed with ALS than the civilian population. The Veterans’ Benefits Administration presumes that ALS is a 100% service-connected disability, and the benefits follow. I am living the healthiest, safest, and most engaged life possible because of my many VA benefits, including access to healthcare. 

Additionally, I’ve reconnected to my veteran community through a team at I AM ALS. We work relentlessly to connect veterans with ALS and family caregivers to benefits, connect and coordinate with service organizations, and promote legislation that benefits all people with ALS. 

Fast forward to today, I’m still busy living. Steve and I have five precious grandchildren; I’ve published two novels, I continue to educate and advocate. I’m in law school now, hoping that being a lawyer will help me be a more effective advocate. 

Without an effective treatment or cure, ALS has left me unable to move, dependent on a tracheostomy and ventilator to breathe and PEG tube to eat. I do everything on a computer that I control with my eyes. I use a ventilator for breathing at night, and my computer will soon be my voice. I am physically dependent on my family for everything; I can’t scratch my nose. 

I’ve learned on my ALS journey that I don’t corner the market on struggle or grief. We all go through hard times. I have precious little control over my diagnosis and how it has left my body like Raggedy Ann’s. I can control how I respond. With each loss of ability, I white-knuckle, grin and bear it. Then, I grieve with an epic snot-face ugly cry. I stay there for an hour or a day, as long as I need to. Finally, I return to gratitude as soon as I can. I look to my family and friends. I realize that in what truly matters, I’ve got in spades.

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