“Everyone has a story”

Craig Bower is the son of the late Clarence Bower, who is the father in this story. Craig wrote this piece “in hopes it may inspire others” and dedicates it to his father’s memory.

Stories of strength, survival, success and failure. Stories of “overcoming the odds” after a life-altering (insert horrible disease name here) medical diagnosis.

I have nothing against those stories. In fact, I’m continually amazed and inspired by them. They make me feel good and give me hope, which I think is why I read them in the first place. Most of the stories seem to summarize an amazing person that became a voice and advocate for their disease. They organized, researched, educated, shared—and most importantly, fought—until the very end leaving me (and others) amazed and inspired.

But some stories are amazing and inspiring for other reasons.

In May of last year my father was diagnosed with Bulbar ALS. Less than three months after this diagnosis, he passed away.

To say that this diagnosis came out of nowhere to tear my family apart would be an understatement. It was for us as I always assumed it to be for those I read about in stories: Horrific. What had been visiting, going out to eat and watching ballgames together on the big screen TV quickly became hospital rooms, feeding tubes, and watching ball games together on a laptop between the next round of tests.

My father was that healthy guy that everyone knows. You know, the one that rarely ever went to the doctor his entire life and was always in good health? No medications or ailments and was cruising through retirement enjoying time with his wife, his only son, daughter-in-law and teenage granddaughter.

clarence_bower
Clarence Bower

For as long as I can remember Dad was a hard worker. Growing up, I can remember him working all the time at ‘the mill’ as we called it. It was a sawmill to be specific, where he started working after 4 quick years in the Air Force out of high school. He retired from that mill some 45+ years later. His commitment to doing a good job, being a leader, never complaining, and working hard to provide for his family and earn everything he had was crystal clear to me and everyone that knew him.

His May diagnosis came with some sad, yet encouraging news. Upon diagnosis, Bulbar ALS typically takes 2-3 years to fully mature. Now this was sad because as of now there is no cure, but was encouraging because it somehow lessened the shock of diagnosis by making us feel there was some time. Time to adapt. Time to research. Time to plan.

And most importantly—time to fight.

As we were quickly thrown into the world of ALS, everyone in the family reacted differently. His wife settled into complete denial, his daughter-in-law jumped into research and support, his granddaughter redirected her sadness into her schoolwork, and then there was me. While I can’t honestly remember what it was that I specifically did, I remember trying to do anything to make everything better.

While my dad was clearly saddened by his diagnosis and the inevitable loss of pride and independence, he tried his best to not let it show. He accepted more help than I had ever seen him want or ask for in his life. He learned how to live with a feeding tube, how to talk to doctors, how to apply for VA assistance and how to alter his financial planning for his new reality. In the weeks during his last three months with us, my father chose to focus on what would remain once he was gone. He focused on who would take care of his wife that he spent his life taking care of. Who would sell their home, move her out, manage her finances and be there for her future? He would talk to me about his granddaughter and daughter-in-law, and soak up everything I could think of to share with him. We talked about me, my work, and goals. It was the most talking my father and I had ever done.

About the only thing he didn’t seem to want to talk about, was fighting this disease.

Slowly but surely, everything started to come together. Various financial plans were made, accounts were transferred, control was given, and things were in order for the future. I remember sitting with him one night, literally breathing a mutual sigh of relief that as a family we managed to get everything addressed and planned out. Now, we could focus on the next couple of years and his comfort.

But there would be no “couple of years.” Dad’s decision to not fight this disease and let it take him a short two weeks later is not a story that inspires for strength or determination. It’s not a story that inspires for becoming an advocate or voice. It doesn’t give hope and doesn’t leave everyone with a warm feeling of love and comfort. At least not on the surface.

In my heart I truly believe that my dad chose not to fight, but for all of the right reasons.

Emotional, financial, practical, personal and everything in-between. His decision not to fight this horrible disease that was robbing him of his family, and his family from him, was the most important, courageous and strongest decision of his life. Dad was finally able to stop all his hard work, and finally be able to rest in peace knowing that everything would be alright once he left.

Now that I think more about it, this IS a story of strength, survival, success and failure. It’s just a slightly different story.

A story of a man that may not have changed the world, but definitely changed his families, and reminded us that sometimes the best choice is the hardest choice to make.

We love and miss you dad. Thank you for everything.

13 comments

  1. Thank you Craig for sharing your experience. We too held onto the optimistic prognosis, but unfortunately Dad passed away within 3 months of his diagnosis. We were still in shock from the diagnosis, had barely had time to process it, and he was gone. And like your father, my dad was the healthy guy.
    I live each day to the fullest now. I’d like to believe that was the last lesson he taught me.

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  2. Thank you for sharing your story, I to lost my father to ALS in Nov 2013 only 6 weeks after he was diagnosed. He went so quickly it was surreal, he was never diagnosed with Bulbar ALS but we thought that’s what he had as he declined so rapidly. My father like yours was pretty healthy and started having horrible back pain and breathing issues, after many tests and they couldn’t figure out what was wrong with him he was sent to Shands in Gainesville and it was there he was finally diagnosed. I miss my father so much there’s a piece of my heart missing. My heart breaks for those dealing with this horrible disease and I sure hope they find a cure!!

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  3. Thank you for sharing. A lot of people don’t understand decisions like your dad’s, but many of us in this community most certainly can empathize and wish others could. I certainly consider his decision heroic.

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  4. Thank you for sharing. Just lost my dad too, June 15-almost identical story. Too fresh to say much more but-thank you right now.

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    1. Julie so sorry for your loss I lost my dad in Nov 13,2013 and I still hurt. It took me almost 2 full years and being on medication to even talk about my dad or look at pictures of him without crying. My father had just retired in April 2013 and was having problems then but little did we know the battle we were fixing to endure. My heart aches for those that fight this battle and the families that have to go through this as well. Sending prayers to you and your family 🙏🏻

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  5. Thank you, Craig, for your story. It answers a lot of questions I’ve had since you called with the shocking news of his death. I miss him and his quiet ways.

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  6. Craig,
    All I can say is that your father was and is one of kind! More and more I see people dealing with cancer and “it” being cancer can take down (emotionally/financially) their families with them. I know it was tough and will be for many years to come, but your father will always be a part of you. Keep your head up and never forget.

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