Her message reads, “My mom and I are best friends and she was diagnosed a year ago with ALS. I am trying to prepare myself for life without her, but I’m devastated and she’s still here. I’m making memories but secretly heartbroken. Any tips?”
Every time I get a message like this I wish I had an “easy” button. I wish I had a way to wave a magic wand and erase the incoming pain and the unavoidable devastation. I wish I could teleport myself through this computer screen and into the space where this woman is, if only to sit with her and acknowledge her path and her journey.
Once faced with the reality of a dying mother, I share a tiny glimpse of the same grief.
Eventually, she won’t be making anymore memories and the devastation she currently feels will be doubled, tripled even, and then multiplied by a billion.
Eventually, she will be faced with an unthinkable loss.
Eventually, she will lose her mother. Most of us do.
And the complexity of her story is that she’s already grieving and enduring immeasurable ache. She is grieving pieces of her mother already– the way she was before a terrible disease started impacting her body and her mind. The way things were before a terminal diagnosis. The way things were when the future didn’t look so terrifying and unknown.
And it’s so complicated with a path like this– with a loved one experiencing a disease like ALS or Alzheimer’s, where you pray for more time while also wishing for a peaceful and dignified end. Where you pray for them to stay as long as they can, but also hope for no pain and an end that doesn’t prolong a debilitating condition. You wish and hope and pray for conflicting things because your mind wants the best path for your parent, but your heart wants what’s best for you– a life and future with her.
How can I possibly provide advice on something so delicate? How can I possibly find the words to honor and respect such a fragile experience? It feels impossible, but I try. I wipe my eyes, which are filled with tears and I type this:
My mind and heart are so full of emotion that words seem to have escaped with fear that they won’t be right or just or qualified to answer your question. But, I’m going to try my best because my heart knows glimpses of a similar grief.
Be present.
Be patient.
Be you.
Sounds simple, because it truly is as easy and as complicated as that. Life right now in this moment, and life in the future, the one you’re stepping closer towards, are both chaotic and kind. Anything beyond simple advice will be as overwhelming as accepting the truths of what you’re about to endure. So, I say again…
Be present. Be patient. Be you.
Be present– in each moment that you have left, even the difficult ones. Take pictures. Write notes. Soak it all up. When you want to worry about the day head, or things beyond the very moment you’re in, stop. Pause. Stay in the right now. Tomorrow’s troubles will come, ready or not, so for now, stay right there in that moment. And keep doing that each day. Stay in each second that is left knowing the next one isn’t promised.
Be patient– with your mother, with yourself, with life, and with every single person and piece of what surrounds you. This situation is tricky and it holds so many fragile elements. Holding patience through all of this will not be easy, but it will be invaluable and worth the effort.
Be you– in your messiness, in your brokenness, in your anger and fear and love, and more than anything in your full authenticity. Give the same love you gave before. Be the same voice you were before. Be the person you’ve always been, knowing you do not have to shift or shape or act for the world, because this is your world too.
And that will be enough. It has to be.
And it will hurt, but also be covered with love.
And it will sting, but also be covered in reminiscence.
And it will be yours.
Your story. Your way.
And when the time comes for final goodbyes and an ending to this section of your story, it will be everything you thought and a million things you never expected. And it will hurt in ways you assumed, but also in places you didn’t know existed within yourself. And it will chisel holes in your soul, and place gaps in your future, but it will also gift you the priceless opportunity to become your mother’s legacy.
And more than anything, you will survive, even when it doesn’t feel like it. Afterall, you are your mother’s daughter.
