I’m not going to lie, this one is going to be tough to write.
But if it reaches even one person, then it will have been worth writing.
Next week, author Lisa Genova will be in Tulsa to speak at two events: at the 5th annual AWARE (Alliance of Women for Alzheimer’s Research and Education) Luncheon and as a guest of Tulsa Town Hall. I am elated that I have the opportunity to attend both.
She wrote a book called Still Alice. It’s a beautiful, albeit heartbreaking, story. It’s one I’ve had on my bookshelf for some time now, but it’s one that I put off reading time and again because I knew it, too, would be tough to get through.
The story is about a highly capable, wonderfully strong, and incredibly smart woman who is diagnosed with Early-Onset Alzheimer’s Disease just as she turns 50. And although the book is fiction, Genova’s research and explanations of a most horrific process are spot on and 100% true.
I’m not ignorant of the phases of Alzheimer’s. In fact, I thrive on educating others about the disease, the key signs to watch for, how to understand the disease, and most importantly, what we as a country can do to fight it.
When I give public speeches about Alzheimer’s Disease, I always share my story and my multiple connections with it, and I give my why:
I lost my Grandma Syble to Alzheimer’s just as Philip lost his grandmother to it, and now we are watching his mom, Sandra, suffer and decline from it as well. I am raising awareness and advocating to end ALZ so that my children will know a world without Alzheimer’s.
Doesn’t that sound good? It’s well-rehearsed, very open, completely honest, and straight from the heart.
Here’s the truth.
Here is what reading (and watching the movie based on the book) Still Alice revealed to me…
My why is much, much more selfish than I realized.
The real reason I have to stop this disease is actually all about me.
That doesn’t make me proud.
But at the heart of the matter, I am scared to death of this disease. I am more afraid of an ALZ diagnosis than any other health concern that I can imagine. And I have tried. I’ve thought through them, I’ve Googled, I’ve researched, and I’ve tried to imagine. But Alzheimer’s Disease is still at the top of my fear list. I live in absolute terror that one day I will begin to recognize those 10 signs that I teach others to watch for in their loved ones.
I can’t get this disease. I can’t handle it. I just can’t endure what it does.
And I don’t mean what it will do to me. I mean what will happen because of me.
It’s what it will do to Philip. And what I can’t put him through. Again.
At the back of the book, in the author’s notes, Lisa Genova says that she wrote the story from Alice’s perspective because she felt it was important to keep the focus on her as the person diagnosed and living with EOAD. But as I read, and as I watched, what kept initiating wave after wave of body-wracking sobs was what the diagnosis, the process, and the prognosis were doing to Alice’s husband, John, and the world they had spent their lives building. Together.
Like I said, this story is fiction, but it is 100% real.
All I could see was what my getting this disease would do to my Coach – the heart-racing, butterfly-inducing, ultimate love of my life.
He witnessed it as a child watching his grandmother deteriorate and die. He lives it every day as a caregiver to his mom who was his true first love.
I simply can’t put him through it again.
He’s a provider and a protector.
He takes care of me; he takes care of everyone.
He’s not perfect. And neither am I. But we are perfect for one another, and together we have a life that is better than a dream come true and a love that is more powerful than a fairytale. I’m not sufficiently gifted with words to adequately explain it, but we feel it.
We couldn’t function without the other; it’s just the way we are.
If I could no longer be his Ashli, the impatient, over-zealous, jumps-to-conclusions, never-finishes-a-project, loves-too-big, talks-too-loud, over-committing, bulldozing, smart but silly, capable but dependent, creative, crafty, book and numbers nerd that he fell in love with, it would devastate and destroy us both. It certainly would not be my fault, but I would be ruining what we have built together. And I think that would break me, actually shatter me into pieces too small to salvage.
I would tell him to go on with his life, his calling, and his ambitions. But he wouldn’t. His character would not allow for a choice in the matter. So, I – through the disease – would be killing us both.
I can’t do that. I just can’t.
So, although most days I don’t feel as though I make much of a difference, I am still trying.
The more we do at the grass-roots level, the more volume we give to our collective voice. As our voice grows, attention is garnered and awareness is raised. It becomes a priority for more people, so the government becomes interested. That’s when the ball really gets rolling.
The government then invests in the research that is showing promise. The projects that were started with grants and gifts can now be funded on a grander scale by the NIH. Without the financial support at the entry level (which often comes from the Alzheimer’s Association), those trials don’t get off the ground. In other words, we MUST raise funds at the local level to promote new ideas for attacking this disease so that we can find a way to treat – and someday cure – ALZ.
If you’ve already given to my 2018 Walk to End Alzheimer’s fundraising campaign, THANK YOU! I appreciate you so very much!!
Which makes this especially hard to ask, but would you be able to do just a little more? Another $5, $10, or $20?
If you haven’t had an opportunity yet to donate, will you please do a little something now?
I have until December 31st to raise funds for this year, and then, yes, I’ll start asking again for next. It’s excruciatingly difficult for me to continually ask for money, but reading and watching Still Alice, reaffirms for me and honestly depicts the impact we can make through support of the Alzheimer’s Association. I am truly honored to be part of an organization that helped make the book publication, the movie production, and the sharing of accurate information possible.
If you haven’t made it through Still Alice yet, grab some more tissues and keep at it.
It’s tough, but it’s worth it.
Just like we are…tough, but worth it.
So, we’ll keep walking, keep talking, keep raising, and keep trying to #ENDALZ.
With love and hugs,
Me and Coach…