There is no roadmap for this disease. Lou just takes you by the hand and drags you to a total loss. But sometimes he lets go, losing interest for a while, and you find yourself on the sunny road.
May is nationally recognized as ALS Awareness Month. Four years and I am still trying to figure out what this means to me as a wife/caregiver/best friend of someone with ALS. I want to advocate, but I struggle with how to do that in the most effective way. I am no nurse or fundraiser or technician or speech pathologist or physical therapist or psychologist — despite the fact that I have taken on many of those roles since Sam’s diagnosis. For those of you who knew me five plus years ago, this has definitely been the most brutal path to self-growth.
But then I remembered that there is nothing I enjoy more than reading and discussing ideas. One of the more organized and disciplined ways to share my thoughts involves staring at the computer screen, drenched with angst. Until something takes shape. Then flight. I don’t have a platform, but, like each of you, I have a voice. So, I choose to write.
In her book, The Gifts of Imperfection, Brené Brown writes: “To love someone fiercely, to believe in something with your whole heart, to celebrate a fleeting moment in time, to fully engage in a life that doesn’t come with guarantees — these are risks that involve vulnerability and often pain.”
Isn’t it ironic how what is required of you can cause you so much joy and pain? Ironic seems like a callous word because accepting contradictions, and every wrinkle in your plan, leads, ironically, to more understanding and assurance. Maybe I mean that to give up what you consider to be the most valuable (your time, your youth, your money, your happiness, your silence) can lead to treasures that take some time to see the value in.
In my life, that which is required of me is to care for Sam. I have given everything, and I would do it again. But the more that I throw myself into him and caring for him, the more I let go of what I believed made me, me. Or at least would make me someday. Everything that I “should” have at this age (career, another degree, increased income, house, children, 401k) is just not in the picture. And if I’m not sure that I want it in the first place, what is there to despair or to envy? I know many people must feel this way, ALS or not: off-track and … free?
What I’m trying to say is that this life is so unpredictable, and what you think you lose is really what you gain. And sometimes what you lose is horribly painful. But with no map, Sam and I make our own road, embracing a new path. Losing everything and gaining everything.
It’s taken many dark nights of the soul to sift these thoughts — and I know there will be many more. Sam and I are being led down a path where the ending is unsure.
But with fear of being dismissed as cliche, I know the way by heart. We all do, but we have to give a voice to that intuition — no matter the cost.