Death is a constant in the ALS community. Yet this one hit me particularly hard. My dear friend and adopted sister won her battle with ALS on Wednesday, January 18th.
I met Karen and her amazing family in May, 2014 at the National ALS Advocacy Days in Washington DC. Instantly, she was my sister from a different mister. She was a few years ahead of me in her ALS progression, yet I knew I wanted to roll with this disease just as she did, with grace and dignity.
Our disease progressions were nearly identical and we would talk and text share the joys of sisterhood and our grief with each new loss. We also shared how thankful we were for our loving husbands who sacrifice so much to take care of us.
I was compelled to emulate her infectious smile and positive attitude. She advocated relentlessly to make life better for people living with ALS.
We looked forward to seeing each other in every year in DC. We even had a surprise meeting at an institute in Florida. Like a true friendship, we would pick up where we left off without missing a beat.
The scientific community is so close to an effective treatment for the SOD1 familial form of ALS that Karen had. I’m angry that she didn’t have access to the experimental drug. Yet, Karen would tell me to not be angry, it’s just the way it is. So to honor her I won’t stay in anger. I’ll focus my energy to gratitude for knowing such an amazing women.
I learned so much from Karen. She set the tone and direction for how I roll in my life with ALS — with grace and dignity.
Here’s an excerpt from Karen’s final message:
The day has finally come, I am free from this body that has trapped me. Please don’t be sad, celebrate the life that I had before ALS took over. I put up a good fight and in my mind I have won my fight against ALS. Yes, this sucks and I will miss so many great things, but I have had a life filled with love and happiness. ALS could never take away the fact that I have spent many joyous days with the most amazing family and friends. Thank you for making my life such an awesome ride! … To my family and friends, thank you for making my life so incredibly awesome. Never forget how fragile life is and that every day matters!
I’m Forgiven and thankful that Karen is Free