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.

Read more...

Alice's Bucket List

I got a little jolt of perspective this morning when this appeared on my Facebook wall. Meet Alice. She is 15 years old and has terminal cancer. After her latest test results, it became apparent that the cancer is winning, and there is little else that can be done.

As a friend of mine said this morning, can you imagine being 15 years old and knowing you are going to die?

Reading Alice's words, though, you only hear the voice of someone who is grateful for the unknown people who have written her to send their support, or try to make some of her wishes come true. She expresses gratitude for the time she has left with her family and how she is going to spend it.

So much strength from someone so young, facing a battle and a reality bigger than I can imagine.

Reach out to her if you can, join the bone marrow registry, and most of all give thanks today for the good things in your life and the promise of tomorrow.

Click here to visit Alice's blog.

Click here to join the Bone Marrow Registry.

Read more...

Danny & Annie

Danny & Annie from StoryCorps on Vimeo.

I am so behind with my writing. This is my weekend to write, and I am beginning by taking a little shortcut to share something I came across via Twitter this morning. I am not crazy about the animation style of this, but the story behind it is just beautiful. if you don't know about NPR's StoryCorps, you need to check it out. I cannot count the number of mornings on my way to work that I would have to pull the car over when listening to some of these stories. Just beautiful stuff.

Read more...

He Remained a Gentleman to the End

I have tried to keep the darkness I am experiencing right now from becoming too raw and broken in my posts here and on Facebook and the variety of other places I write these days. It is difficult, as the times I write most freely about anything are ironically the times when I am struggling. I think it is my way of coping, some way of letting the pain find a window to escape through.

So tonight, I was searching through a poetry site I had never been to before. I love to search and find poetry that mirrors my journey or pain, and I am often astonished at how someone else's words seem to capture the struggle in my heart and mind. I came upon the following piece:

Drawing from Life

by Reginald Shepherd

Look: I am building absence
out of this room's air, I'm reading suppositions into
summer's script snarled on a varnished floor.
It looks like a man. That knot's his hand
waving good-bye, that stippled stripe of grain's
the stacked-up vertebrae of his turned back.
Small birds (sparrows or finches, or perhaps)
are cluttering the trees with blackened ornaments (burning
in the remnant light of August eight o'clock), and noises
I can't hear. Chirring there, chittering. The window's closed.

I am assembling a lack of sound
in this locked box, and dotting all the i's
these floating motes present (my composition), I am not lonely
for the palpable world (midges I dap hands for
and kill), shivering into darkness underwater outside glass:
what's left of light sinking from zero down to less,
cobalt down to zaffer, deeper to purple-black
where divers drown. The swimming landscape's
all mistake (one world that shuts air into
my submerged terrarium), and I am luck.

I was so taken with this piece, the flowing prose, the tangle of words I read and think I could never put together... I wanted to find more by this poet. I searched through the site and Google and found a few other beautiful pieces, and was so excited to be discovering a talent I didn't know about, and looking forward to reading more of his work as he wrote more to add to his already extensive library.

Then, I saw a link for his blog. I was so happy, as I looked forward to reading his thoughts on the craft, as well as just getting to know him better. I clicked on the link for his blog, and began to read the most recent entry. I literally gasped a little out loud.

I suppose I should have publicized these a bit earlier, but I don't always have it completely together lately. In any case, there have been a number of publications of Reginald's poetry and essays since his death last fall.

Since his death last fall. How? Why? As I read more, I found that the writer of the posts was Reginald's partner and love, Robert Philen. Reading Robert's entries, one can almost see him struggling with every word. It seems hard for him to write the word death. His pain is real. Reginald died after a battle with cancer. He was only six years older than I am now.

The blog contains more of Reginald's work, and he was astonishingly talented. I still marvel at his words and the way he turns an overflow of descriptives into something so simple and striking. Just beautiful. As I read more of his blog tonight, it was so sad to see his last entry, detailing his current hospital stay, and then two weeks later, a post from Robert about his death.

What a loss to not know years more of his work. But what a find tonight to be discovering him. I am off to read more. I realized that I can still go and learn about his thoughts on writing, and just learn more about him as a person. He has two years of blog entries left behind as a gift.

The title of this post is a quote from a nurse who cared for Reginald near the end of his battle with cancer. I thought it was such a beautiful thing to say.

I leave you with one more piece of his work, and below it, the link to his blog.

YOU, THEREFORE

For Robert Philen

You are like me, you will die too, but not today:

you, incommensurate, therefore the hours shine:

if I say to you “To you I say,” you have not been

set to music, or broadcast live on the ghost

radio, may never be an oil painting or

Old Master’s charcoal sketch:

you area concordance of person, number, voice,

and place, strawberries spread through your name

as if it were budding shrubs, how you remind me

of some spring, the waters as cool and clear

(late rain clings to your leaves, shaken by light wind),

which is where you occur in grassy moonlight:

and you are a lily, an aster, white trilliumor viburnum, by all rights mine, white star

in the meadow sky, the snow still arriving

from its earthwards journeys, here where there is

no snow (I dreamed the snow was you,when there was snow), you are my right,

have come to be my night (your body takes on

the dimensions of sleep, the shape of sleep

becomes you): and you fall from the sky

with several flowers, words spill from your mouth

in waves, your lips taste like the sea, salt-sweet (trees

and seas have flown away, I call it

loving you): home is nowhere, therefore you,

a kind of dwell and welcome, song after all,

and free of any eden we can name

To visit Reginald's blog, click here.

Read more...