My mantra is “Be strong!” When I get out of bed in the morning, the thought goes through my head, “Will I fall?” I say, “No, BE STRONG!” When we discussed highlights from our lives at last week’s dahlia tuber digging lunch, Martha asked how I got over the Rocky Mountains on my cross-country bicycle trip.
"My advice to other disabled people would be, concentrate on things your disability doesn't prevent you doing well, and don't regret the things it interferes with.
Don't be disabled in spirit as well as physically."
I’m sorry you are suffering so. You have been so courageous working on and writing about how to find meaning and resilience and even some joy and gratitude as you struggle with this horrible illness, but today I feel like you are questioning “why?” more than ever.
Here are the questions that struck me (almost literally):
Is it possible that my body remembers and can tap into that determination?
Is it also on me to manage whether my neurons tell my muscles to function?
…people with ALS must conserve their energy. What does that mean when it comes to walking vs. not walking?
My legs have been strong ever since my bike trip, but does ALS notice or care? I use that life detail to cheer myself on. Could my leg strength transfer to communicating?
But how long will this strength last?
How do I accept this life, best depicted by my tray with three syringes, bottles of pills, my liquid feeding extension tube, and a mortar and pestle for crushing the pills?
How can I help Kathleen to have a good life in spite of my ALS?
I would not presume to have any answers for you and, besides, you do an excellent job figuring them out for yourself.
Larry and I have also been questioning how to plan for an uncertain, unpredictable, and unknown future.
The best I can do some days is to put everything out of my head and just breathe. And ask myself what is happening right now? Breathe. In this moment? Breathe. I am typing on my phone, lying on the couch, with a soft, warm-bodied cat on my lap. Breathe. The sun is shining. Breathe. Am I ok right now? Breathe.
If it ever happens that every time I check in on the present moment I feel that it is not tolerable then I have a different problem to solve. How can I make it better? That question raises more questions. Will it get better on its own? Do I have possible improvements or supports to try? Is my life still worth living? What makes it so? Do I want another moment of feeling my cat’s warmth and hearing his purring? Do I have to make a decision right now?
And inevitably things change. Not always for the better but you can count on change. You cannot predict how you’ll feel. Only that there will at some point be a change in your present moment. And then and always it’s time to check in again.
Here are some of my favorite quotes about dealing with uncertainty:
E. L. Doctorow
“Writing is like driving at night in the fog.
You can only see as far as your headlights,
but you can make the whole trip that way.”
Anne Lamott
“You don’t have to see where the road leads. You just have to take the next step.”
Rainer Maria Rilke
“Let everything happen to you: beauty and terror.
Just keep going.
No feeling is final.”
(Last line is patently untrue but we’ll let it go.)
And my favorite but I don’t know who said it! (Yogi Bera? Churchill? Mark Twain?)
Dear Pam, I'm reminded of the "both/and" concept. Even opposing things/feelings/beliefs can be true at the same time. I think you are doing an amazing job facing, even when your back is turned, all of these profound issues. Hang in there, kiddo. Sending love.
I've read A Marriage at Sea twice. First was last summer when I had heard about it on the NYT Book Review podcast. The story was so intriguing, and I was thinking a lot about marriage as I was to be the officiant at my son's wedding. I used one sentence from the book in my speech which, btw, was very well received. The question in my mind was: What makes a marriage last? Anyway, I just reread it for my book club and it was every bit as compelling this time around. Dang, what those people went through!
I'm honored by your noting that with my beloved friends and family I'm showing a sacred space amidst the mess of all this. I am trying for that each week and for faith in action. I appreciate your understanding and sharing how it strikes you! Pam
Oh Joanie, thank you. I was just telling my friend Martha about our sailing our 110 Cadenza from Hingham to Marblehead in ten foot waves. And we made it!
I love your weaving through the questions I raised. Like you, I have Isaac lying close by and that gives me comfort. I've also got Spotify on some easy listening loop that is making me happy. I will breathe and try and stay right here in the present. Sending you and Larry lots of love--Pam
So many losses, indeed. And yet, and yet, I feel your aliveness, your inquiring mind, your love, your curiosity about others--all these are bigger than ever. WOndering if it feels that way to you?
"My advice to other disabled people would be, concentrate on things your disability doesn't prevent you doing well, and don't regret the things it interferes with.
Don't be disabled in spirit as well as physically."
--> Stephen Hawking
I’m sorry you are suffering so. You have been so courageous working on and writing about how to find meaning and resilience and even some joy and gratitude as you struggle with this horrible illness, but today I feel like you are questioning “why?” more than ever.
Here are the questions that struck me (almost literally):
Is it possible that my body remembers and can tap into that determination?
Is it also on me to manage whether my neurons tell my muscles to function?
…people with ALS must conserve their energy. What does that mean when it comes to walking vs. not walking?
My legs have been strong ever since my bike trip, but does ALS notice or care? I use that life detail to cheer myself on. Could my leg strength transfer to communicating?
But how long will this strength last?
How do I accept this life, best depicted by my tray with three syringes, bottles of pills, my liquid feeding extension tube, and a mortar and pestle for crushing the pills?
How can I help Kathleen to have a good life in spite of my ALS?
I would not presume to have any answers for you and, besides, you do an excellent job figuring them out for yourself.
Larry and I have also been questioning how to plan for an uncertain, unpredictable, and unknown future.
The best I can do some days is to put everything out of my head and just breathe. And ask myself what is happening right now? Breathe. In this moment? Breathe. I am typing on my phone, lying on the couch, with a soft, warm-bodied cat on my lap. Breathe. The sun is shining. Breathe. Am I ok right now? Breathe.
If it ever happens that every time I check in on the present moment I feel that it is not tolerable then I have a different problem to solve. How can I make it better? That question raises more questions. Will it get better on its own? Do I have possible improvements or supports to try? Is my life still worth living? What makes it so? Do I want another moment of feeling my cat’s warmth and hearing his purring? Do I have to make a decision right now?
And inevitably things change. Not always for the better but you can count on change. You cannot predict how you’ll feel. Only that there will at some point be a change in your present moment. And then and always it’s time to check in again.
Here are some of my favorite quotes about dealing with uncertainty:
E. L. Doctorow
“Writing is like driving at night in the fog.
You can only see as far as your headlights,
but you can make the whole trip that way.”
Anne Lamott
“You don’t have to see where the road leads. You just have to take the next step.”
Rainer Maria Rilke
“Let everything happen to you: beauty and terror.
Just keep going.
No feeling is final.”
(Last line is patently untrue but we’ll let it go.)
And my favorite but I don’t know who said it! (Yogi Bera? Churchill? Mark Twain?)
“When you’re going through hell
Keep going.”
Pam,Your beloved community of friends and family are an example to me of how faith and hope show themselves in the world.
Your writing provides a sacred space of hope amidst the mess of all of this.
For me you are a living example of faith in action. Thank you.
Dear Pam, I'm reminded of the "both/and" concept. Even opposing things/feelings/beliefs can be true at the same time. I think you are doing an amazing job facing, even when your back is turned, all of these profound issues. Hang in there, kiddo. Sending love.
I've read A Marriage at Sea twice. First was last summer when I had heard about it on the NYT Book Review podcast. The story was so intriguing, and I was thinking a lot about marriage as I was to be the officiant at my son's wedding. I used one sentence from the book in my speech which, btw, was very well received. The question in my mind was: What makes a marriage last? Anyway, I just reread it for my book club and it was every bit as compelling this time around. Dang, what those people went through!
❤️❤️❤️❤️❤️
Melody,
I'm honored by your noting that with my beloved friends and family I'm showing a sacred space amidst the mess of all this. I am trying for that each week and for faith in action. I appreciate your understanding and sharing how it strikes you! Pam
Oh Joanie, thank you. I was just telling my friend Martha about our sailing our 110 Cadenza from Hingham to Marblehead in ten foot waves. And we made it!
Sending love,
Pam
Sally,
I love your weaving through the questions I raised. Like you, I have Isaac lying close by and that gives me comfort. I've also got Spotify on some easy listening loop that is making me happy. I will breathe and try and stay right here in the present. Sending you and Larry lots of love--Pam
Linda, I'm so glad to hear that you enjoyed it so much. I'm a lifelong sailor, so I'm loving that part of things too!
Meri, I so appreciate your loving support! Pam
Thanks for this gift. I will work with this, not being disabled in spirit as well as physically.
So many losses, indeed. And yet, and yet, I feel your aliveness, your inquiring mind, your love, your curiosity about others--all these are bigger than ever. WOndering if it feels that way to you?