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.

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The Power of Kindness

In the last two to three years, I have witnessed beauty and acts of kindness that have made me believe in the power of the internet, online “community”, and the goodness of people. When Matt Logelin lost his wife the day after his daughter was born, people from all over the world reached out, offered help, and sent words of comfort so achingly beautiful, that my faith in people—strangers moved to do good things—grew exponentially.

Through the blogs I follow and writers I love, I have watched as total strangers have “circled the wagons” around families in need, rallying at warp speed to arrange fundraisers, support, supplies- and whatever is needed to help. I would read accounts like this late at night and go to sleep believing that despite everything else, the goodness of people outshines some of the dark headlines and random, horrible events that take place every day.

I still believe that, for the most part. But, I have seen the alternate power of the internet this past week—the power of words and anonymity that combine in cyberspace to do a deeper harm than it seems words should be capable of.

Part of the beauty of the world wide web and all pages we all stop and drop in on, is that the world is at our fingertips. We can “visit” cities that are a half a world away, we can learn about any topic under the sun in vivid detail, complete with photos, firsthand accounts, and historical data. We can read the words of prize-winning journalists mere seconds after they complete their keystrokes.

It is all incredibly powerful.

And while reality tv and that mindset have invaded our living rooms, we all feel it is our right to peer a little more closely into the lives of others, and with each breaking news story, we are offered details, photos, and minute by minute accounts in real time. We now expect it. Immediately. We demand it. It is almost surreal that as natural disasters happen around the world, we see the footage instantly, as it is happening, wherein the past we would have had to wait for the next day’s newspaper, or a news report on television at only 6pm or 11pm. This is nothing short of miraculous, even though it seems more commonplace than extraordinary as we have all grown accustomed to the technology that makes it happen, and our ability to access it.

We read articles on cnn.com or yahoo.com, or our own local newspaper or television websites, and not only can we process the words and form an opinion, we can also comment—share our views and beliefs in a forum where thousands and even millions will see it, our words just under those of the journalists who penned the articles. I have been moved in the past to make comments, especially in the early stages of the online availability to comment. But today, if you go to cnn.com and pick ANY article and scroll through the comments, you find very little substance, but plenty of hate, provocation, and a whole lot of nonsense meant to inflame, not to inform. It’s one thing when these idiots comment on a travel article and spew drivel about what a stupid place a certain area is to visit, etc. But it is another thing entirely when the story involves a death-the murder of someone’s child- and people belittle the loss as deserved or the fault of the parents. Especially on a local level, when one’s own neighbors and community members are the commenters, the words take on a new meaning. The power is immeasurable, the pain deep and brutal, and the ability for these people to remain anonymous in their viciousness only makes it easier to take the cruelty to another level.

I have watched this past week as Katie Granju has suffered because of the words of strangers. Katie lost her son last year, and amidst the pain and grief of losing her oldest child, she has had to fight to get authorities to conduct a proper investigation into his murder while being treated in such an appalling manner by so called “public servants” that I have been enraged and brought to tears more times than I can count. Her son battled addiction, and she has been open about his struggle, and her family’s struggle to help him with the battle he ultimately lost. Because her son Henry was an addict, heartless, uneducated people have told her such things as he “deserved” to die, and have said such other horrible things to her that I have found myself gasping reading the words, and doubting humanity.

I believe that everyone deserves to have an opinion. And maybe even readers of my blog who have linked to Katie’s blog and the other sites that detail Henry’s story and his case disagree with Katie, me, and her other supporters. That is fine, and while I am passionate in my beliefs, I respect that others may disagree. However, no one should have the right to say such wicked things that have no bearing on their opinion or the case at hand and have the comments released in a public forum alongside a news story or video. Maybe that sounds simple and ridiculous. And maybe it is. But I believe in kindness and compassion for a mother that has lost her son-- a mother that has never once portrayed herself, her son or anyone in her family to be without flaws, imperfections, or moments they wish they could take back.

In seeing this happening to Katie, I began to look at other news sites. I spent hours a few nights ago going to random news sites all over the country and clicking on articles featuring all kinds of stories, cases, crimes, and topics. And almost without fail, the comments sections made me nauseous. Maybe some of the comments had merit. Maybe some of these anonymous people knew a great deal about the families involved. But every subject of every story is someone’s son or daughter. Every person on this planet has parents and came from somewhere.

Katie and Henry taught me about my own perceptions of addiction, and educated me in ways I am so thankful for. And once again, because of Katie and Henry, I am learning a huge life lesson. I am a passionate person, and my opinions are rarely tempered. I believe that I am also compassionate and tone down my words in the right situations, but even moreso now, I understand the lasting power of my words, especially in cases and situations where I don’t know the whole story. While I don’t align myself with the people that have posted ridiculous rants about the outfit a grieving mother chooses to wear, or hate-filled sentences clearly meant to cause pain, I will always think before any comments in a public forum about the real people behind the story, and what those words will mean to them when they read them.

As powerful as all this access and technology is, kindness is more powerful. Kind words and acts in the face of deliberate hatred are breathtaking and inspiring. Thankfully, Katie and her family have also received a great deal of kindness and beautiful acts of love and support from friends and strangers the world over. I have watched through this last tough week as one day seemed more painful than the last, and the “army” of supporters rallied around her family on Facebook, her blog, and her other sites. I hope our words of kindness are ringing loud and clear, drowning out the other voices and hateful words.

I hope we are all learning the power we have-- the power of our words, the power of our love, the power of kindness.

The photo for this post is one of "Ben's Bells"--part of a project that Ben's family started in the face of tragedy to encourage kindness in their community. Learn more here. 

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Mistrial

I did not watch the Casey Anthony trial every day, although I have friends and family who did. I have read several articles about the country’s fascination with this particular case and the trial, many of the authors of these articles accusing those who were glued to their television sets as having a morbid curiosity, or perhaps enjoying the live version of Law and Order. I am sure in some cases this is true, but I think the majority of people out there were just plain outraged that this woman took her child’s life and showed no remorse, much less a moment of grieving for the death of her sweet toddler.

Casey Anthony fit the role of villain very well. Nothing made me more angry than seeing pictures of her partying in bars, a huge smile on her face, drinking and dancing on tables, days after her daughter’s death. This was not a grieving mother. This was a habitual liar, most likely a sociopath, celebrating her newfound freedom. She later said these bar visits were part of her own personal “investigation” to find her missing daughter. Please.

I have tried to make sense of today’s verdict. I have tried to tell myself that maybe the prosecution didn’t prove the case, or provide the jury with what they needed. I have tried to tell myself that since I didn’t watch every moment of the trial, perhaps I didn’t see something obviously missing to make this jury come to the conclusion that seemed so clear to everyone else.

But I can’t make it all make sense. If this mother had ever shown one ounce of sadness over the loss of her daughter, maybe I could have some peace with this, but I doubt it. If she hadn’t lied, celebrated, and waited until she had no choice but to report her daughter missing because her own parents demanded it and called 911. Maybe. But probably not.

Many people have also compared this trial and outcome to the OJ Simpson trial. It is easy to draw parallels. In both cases, we all knew that the defendants were guilty. It seemed a foregone conclusion that a guilty verdict would follow. In seeing and hearing my friends responses after the verdict was read, I was taken back to that time and the OJ case, and remembered the same outrage. We all want to believe in our justice system and that the bad guys that do evil things will be punished. When it doesn’t happen, it is more than unsettling. If the truly identifiable bad guys walk away unscathed—how can we know we are safe? How do we believe in justice again?

The saddest part in all of this is that a child died a horrible death and was disposed of. Casey Anthony got what she wanted, a life without a child, and her freedom. She will likely not serve another day in prison.

I watched the verdict live today, and noticed her parents were emotionless as it was read. They simply got up and left the room. Their lives are ruined any way you look at it. They will likely have to take Casey into their home, after she so viciously trashed both of them during the trial. Either way, they will suffer immensely and will never have “normal” lives again.

I want to believe in the justice system. I believe everyone deserves a proper defense and their day in court. I hate the tactics the defense attorney used, and I hate even more that they worked.

I also hate that as the nation is riveted and angry over a miscarriage of justice, more children are being abused and neglected than any of us want to think about. If we all took that anger and reached out in our communities to help somehow through programs like Guardian ad Litem, or similar efforts, it is the only way we can really hope to change or help prevent things like this from happening. After working as a Guardian ad Litem myself years ago, I was appalled to see the number of cases of extreme abuse and neglect that existed in one county during a few weeks at a time. The number and severity of cases was staggering. I felt as if I had lived in a bubble for so long, not seeing what was going on even a few doors down in my own neighborhood. There are cases like Casey Anthony’s every day that slip under the wire somehow.

In this case, justice was not served. The evil bad guy did not get the deserved verdict. The only way I know to feel like I am doing something is to reach out where I can and try and do some good—to try and sway the balance of good vs. bad a little. It won’t turn back time and make the jury deliver the right verdict, it won’t undo what happened today, nothing will. But it will give me something to do with this anger and disgust I am harboring right now. And hopefully, somehow I can tell myself that this child’s death was not in vain.

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