To me, Veterans Day is a day to acknowledge and lift up those who willingly gave up their freedom in order to provide freedom to others.  I don’t know if many people really think about what it means to join the military.  That when you do, you are not in sole control of your destiny.  That at any moment, you can be told to go somewhere dangerous, to put your life on the line, to take risks so that others can be safer.  My husband and I chose to serve knowing full well what that choice meant.  Today, many who sign up are far more at risk than Charlie and I ever were and I think they deserve recognition for their sacrifices like being away from their homes and their families, and recognition for their willingness to do what many others will not.

My husband, Charles “Charlie” Bauer, entered active duty in the United States Navy on July 13, 1992. He was honorably discharged on November 29, 1999 with the rank of Petty Officer Second Class, having served more than seven years as an Avionics Technician.  During his time in the Navy, Charles worked on F-14 Tomcats, EA-6 Hornets, and served in the Aircraft Intermediate Maintenance Department.  He went on two six-month missions onboard different aircraft carriers, completing both a WestPac and a Med Float during sea duty.

I too served in the Navy, primarily working as a Plane Captain on F-14 Tomcats, completing several short land and sea detachments before switching to the active reserves where I became an AD3 (Petty Officer Third Class). Although we entered the service on the coattails of Desert Storm, we were fortunate that most of our service in the military was during a time of relative peace. 

Charlie and I met while stationed at NAS Miramar in San Diego, California, in the early 90s (that’s us in the picture right there!). I couldn’t really tell you what our first official date was…we just…were. We started dating in May of 1994, met one another’s families in June, got engaged in August and married in September. Five months - that’s all it took.

Charlie started having symptoms - slurred speech and a numb “patch” on his tongue – in April 2013. I can remember thinking, ‘Okay, let’s go to the doctor and get this fixed.’ I wasn’t worried at that point.  Then Charlie was diagnosed with ALS on July 26, 2013, just one month shy of his 40th birthday. 

We didn’t know what ALS was, let alone that there was a connection between ALS and military service in the US.  I’d like to know more about why the hell a connection does exist between ALS and the military! Don’t get me wrong, that connection got us access to medical care, medical equipment, and disability benefits that allowed me to stay home and care for Charlie until his death, and I am profoundly grateful for that.  I am grateful for all of the many benefits serving in the military has afforded us.  But nowhere, and I mean nowhere, has there been anything to give us a reason of why or what the connection actually is between ALS and military service.

And let me share just why Charlie’s diagnosis was particularly devastating to us.  My dad was a C-5 quadriplegic and was confined to a wheelchair since I was two years old. I became his primary caregiver from 2008 until his death in 2012. Charlie would often accompany our daughter, Grace, and me on our visits with my dad. My husband had an immense amount of respect for my dad. But, Charlie would always say, ‘Man, I couldn’t do that. I couldn’t be like that. I don’t think I could handle things the way your dad has all these years’.

Knowing that Charlie's worst fear was ending up like my dad, I couldn't help but dread how our journey with ALS would unfold. Not only would he end up like my dad, but so much worse.  Charlie wouldn’t just lose the ability to walk, he would lose the ability to speak, to eat, to breathe – to move anything on his own. The thing about ALS, is that is not just one moment of loss, it is constant. It starts with diagnosis and it just keeps coming.

We were both 21 years old when we got married and we were together for just over twenty-two years when ALS took him from us on October 12, 2016. My husband handled each stage of disease progression with a bravery I could not have foreseen. His humor was infectious and he brightened the lives of everyone he came in contact with. I am honored to have known Charlie, to have loved and be loved by him, and to have had the privilege of "doing life" with him for those twenty-two years. 

Since losing Charlie, I have chosen to maintain my connection to the ALS community, but I know too that there are many who just cannot.  It is such a truly horrible, debilitating, sickening disease that you cannot blame anyone who wishes to forget it and anything related to its insidious destruction.  But I am finding purpose with continuing in the trenches.

At some point during our three years battling ALS, I had come across a post about the Tri-State Trek, the three-day, 270-mile “Ride to End ALS.” I signed up for the 2017 Tri-State Trek as soon as I could and I started training in March for the June ride from Boston to Greenwich. On the first day of the Trek I rode 60 miles to the lunch stop where I slipped and fell down some stairs after a rain storm. I had to go to the ER where I got two stitches in the back of my head. But I did not come all that way to not do this ride! I rode all 95 miles on day two, and 35 miles on the third day due to some back strain from my fall.  All in all, not a bad first run for Trek. I have never seen so much love, support, and understanding from an organization that has dedicated itself to the eradication of a single disease. The ALS Therapy Development Institute is family and I am determined to do everything in my power to support their efforts to end ALS.

I have teamed up with other locals here Texas who also have connections to ALS and we are building “Team Hope Runs Deep” for Trek 2018. We are also planning a corn toss tournament, a horseshoe tournament and a Fall Festival for fundraisers in our local area to help fund efforts to find a cure. I don’t think there will ever come a time when ALS will cease to be a part of my life.  There was a time when ALS wasn’t even a blip on my horizon.  I know that.  But I can’t remember what that felt like.

And so, I’ll continue on in this fight. In the words of ALS TDI’s Dr. Fernando Vieira “Because we can, we must.”

#HopeRunsDeep

-Katie