Weeks go by like days

Forget your perfect offering/

There is a crack, a crack in everything/

That’s how the light gets in.

— Leonard Cohen


If you let it, writing forces you to think. And thinking, as we all know, is a very dangerous activity.

Socrates claimed that the unexamined life is not worth living.

Well, look what that got him: hello, hemlock.

But in all seriousness, not a lot has been going on in the Happy Harper household, so when I am asked for an update, at times, I am at a loss because I don’t want to think about one more loss. This disease takes and takes and takes until you think you have nothing left, and then, Lou robs you of something else. He borrows for keeps.

Activities that I once anchored myself to have sailed on: diagnosis, second opinions, gathering information, trials, natural remedies, fundraisers, travel, etc. That isn’t to say that we are hopeless.

But as life slows down, each day that I spend with Sam is wonderful and painful, hopeful and despairing.

So, yes, our life is quite boring. In the sense of ALS, that’s great! No major decline or hospital visits or illnesses or falls or challenges that we haven’t had some experience in meeting head on.

But that also means that travel has become increasingly difficult. Sam even finds that long periods in his wheelchair are miserable. So something that we’ve enjoyed so much has become limited, and we’ve been spending more time at home, finding ways to keep ourselves entertained and motivated.

I have begun to focus more on keeping Sam comfortable, physically and emotionally. That’s surprising to me because I used to hate, hate, hate when people told me that that was all I could do: keep Sam comfortable.

Four years ago “comfort” meant no hope, giving up, waiting for the inevitable while distracting ourselves from the pain. But now I view comfort as an integral part of how I love and care for Sam.

Life has a way of teaching you lessons that you absolutely do not want to learn. And I’ve always been a slow learner, in school and in life. I seem to stumble down the difficult path while others glide, blue skies and smooth sailing.

But then, I shake off the self-pity, reminding myself that we all have challenges and hurdles and mountains and upstream battles and on and on the metaphors go to inspire us not to give up. Sam and I are not unique in that we experience pain. History is filled with those who life crushed and those who crushed life.

I used to never understand when people told us that we were inspiring. I’d think, well, we’re just living our life. What are we supposed to do? And slowly I’ve begun to realize that that is the beauty of it: we carry on together, we laugh and cry together, we bicker and look for support in each other. Our love deepens as we cling to fragments of our life.

And our journey really has been amazing. We have been beyond blessed by the constant support we receive from so many of you.

Your generosity, then and now, allows me to stay home and care for Sam full-time and to buy him whatever he may need — from vitamins and probiotics to medical props that allow him to be more comfortable in bed and in his wheelchair — and even a few things he wants. Every donation of money, time, and talents allows us to remain independent, something that is hugely important to us.

And support comes in other ways, too. Cards, gifts, books, meals, offers of help, prayers, and even more ways than I can remember after four and a half years of help.

I know my gratitude has been imperfect. It’s entirely too easy to succumb to bitterness and resentment and the numbing effect of exhaustion, despite all of the goodness that so many of you pour into our life.

Thanksgiving has past, but I remain grateful for forgiveness. For me and from me. Letting go of all that weighs on my heart. Of the ability to say thank you for everyone who has come into our life, and stayed or left.

May I accept what is imperfect and cracked, so I can see the light come flooding in.


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