For Joanie

(click on photo to enlarge)

I first met Joanie in 2008 after reading an article about the death of her daughter Keri. Keri had ALS, and died at the age of 29, only two years after being diagnosed. She had a baby girl, and the disease had left her unable to hold her, change her, or do the things all young moms in their 20s should be able to do. Her daughter Kellyn was only 10 months old when she died.

I read about Keri, and noticed we had several things in common. We were both in marketing, Keri had also been into theater and acting in high school, and she wanted the same things I did. I couldn’t imagine having to prepare to die at the age of 29.

I found out about a local ALS Walk scheduled for that spring in Charlotte, so I signed up for Keri’s team. Within minutes of signing up, I received an email of thanks from Joanie. We emailed a bit back and forth, and I expressed my sorrow for her loss of Keri, and asked about Kellyn. Joanie was so sweet, thanked me about a million times for signing up for the Charlotte walk, and immediately recruited me for any and all things I could do in the fight against ALS. She had that way about her. You were in this with her from the minute you met her, you didn’t really have a choice.

I know if Joanie knew I was writing this, she would want me to write about Keri, about the battle against ALS, about the conference she started in memory of her daughter, about the scholarships in Keri’s name. She wouldn’t want me to write about Joanie. So, I have included all that info, but now I want to write just about Joanie.

Joanie was an artist, an amazing one. Her paintings and drawings of Keri and Kellyn were the ones I saw most, but her talent was evident. Her artistic eye was also apparent behind the camera, her photographs were beautiful.

When I walked up and met Joanie and her husband Harold at the ALS walk, my first reaction was how tiny she was! She was such a petite little thing, but that impression lasted about two seconds. Everything about Joanie was big—her heart, her spirit, her love for Keri and Kellyn, her determination, her energy…I couldn’t keep up with her.

She had battled her own illness- lung cancer, initially diagnosed in 2005, then returning in 2007. She was undergoing chemotherapy while trying to be her daughter’s support and strength. She worried about being there for her and Kellyn. I never totally knew all of the details of her illness. I would ask, and she would give me a short answer, then redirect the conversation to her work to fight ALS, and of course, to Keri.

But honestly, if you met Joanie, you felt her grief in losing Keri so deeply—more deeply than anything—and that stayed with you. It was apparent in her every word and movement. The loss of Keri took such a huge part of her heart and soul. As we walked together for ALS in Charlotte, Joanie hung back and talked to me for hours. I learned so much about her that day, about  Keri, and all the burdens Joanie carried. She was always gracious to ask first about me and my life, what was going on, what I wanted…but the pain and weight of the loss of Keri was so huge for her. She channeled every ounce of her being into working on The North Carolina Conference for ALS (which she created and managed), now in its fourth year. I believe she had to be doing something all the time, focusing her energy in any way that she could help someone else who was suffering, or in just helping people to remember Keri. I always felt she had to keep moving, keep doing, so as to not drown in her grief. I think anyone who has lost a child will understand those words. It broke my heart for her.

She adored her granddaughter Kellyn, and it did my heart good to see the way Kellyn could get THAT smile out of Joanie. Only Kellyn could do that it seemed. Kellyn is a carbon copy of her mom, she couldn’t look more like Keri, and every time I would write Joanie I would say that, and it tickled her to death. She would ALWAYS say- thank you so much for saying she looks like Keri.

Joanie and I were last in touch in March via email. We had emailed back and forth about nothing really, just catching up. In typical Joanie style, she had given me her uncensored opinion about several things. I loved her bluntness and inability to sugar coat anything. If you asked Joanie a question, you were going to get her honest feelings, no two ways about it. I respected the hell out of her. I have tortured myself in the last 24 hours because it was my turn to respond to her email, and I just didn’t. I kept reminding myself, and her email got lost in a sea of others. She wasn’t waiting on a response to anything in particular, I just wish I had sent her one more note.

Somehow, I didn’t know that Joanie’s cancer had come back. And then, last night, I got the news that she had died. After I heard, I scoured her Facebook page, and there was little evidence, except in the last few days with people posting on her wall, first sending prayers to her and Harold, then people expressing shock and sadness over her passing. We hadn’t been in touch as much over the last six months, and I am at least thankful that we were in touch in March.

I told Joanie countless times how much I admired her strength, her ability to love, and her fierce, fiery determination and endless efforts in the fight against ALS. I told her in person, and I wrote those words to her. I just wish I had known her cancer had come back, so I could have told her one more time.

Joanie would tell me to get over it. She would tell me she knew how I felt. She would tell me to just tell all my friends to support local ALS efforts and to spread the word about the conference. So, I will. But just one last time Joanie—let me say that you were an inspiration, a force to be reckoned with (in the best possible way), an amazing—and I mean AMAZING mother. Thank you for the chance to know you. And love you.

Read articles about Keri here and here. 

Information about this year’s conference.

The website that Joanie started in Keri’s memory.