My husband is in bed when I leave for work. I remember all the times he had to catch the early (early!) flight out of Redmond when he was working and how he never, ever forgot to kiss me goodbye. I try to always remember, too.
I leave breakfast and lunch out for him before I go. It sits on a low table because the counter height is difficult for him. It’s hard to get his arms to reach that high.
He gets up and works hard to get dressed. What would be a two-minute nonevent for anyone else is a long and grueling task for him. On my days off, I help him so he can use his strength on more important things.
I am the only working parent now, so he is alone a lot. He reads and prays. He watches baseball (go Cubs!) If one of the kids is home, he putters around the yard, telling them what weeds to pull and which plants need attention. He loves the yard. He actually just loves nature in every way and his feet are tanned so dark from all his time in the sun that they always have bright-white flip-flop lines. Our home is blessed with many little outdoor sitting areas, where he listens to Andrea Bocelli and watches the deer that visit regularly. (I hate those dumb deer.)
Occasionally, he meets a friend for coffee, but it’s increasingly difficult for him to be heard and understood in a crowded environment, so sometimes his friends come visit with him on our deck.
I get home from work around 4 or 5 and I go downstairs, where he has spent most of his day. He sees me, his eyes light up and he always says , “Hello, beautiful.” Always. Those two words are home to me.
I sit and tell him about my day. I tell him about meetings and things I’m studying for and he listens and gives me advice. He’s always been very generous with advice. Heh. I don’t ask what he did with his day- that wouldn’t be a fair question – instead I ask how he feels. Sometimes he says it was a strong day and sometimes not, but he’s pretty honest with me about his strength level.
On this particular day, his phone rings as I go upstairs to make dinner. I hover at the top of the stairs, listening to his voice. Even though it’s been weakened and altered by ALS, it’s still the most beautiful, soothing voice I’ve ever heard (true confession: sometimes I call his phone just to hear his voice mail message which was recorded long before life changed so dramatically.) He is talking to a friend who is discouraged. My beloved says repeatedly,”God’s plan is still sure. We believe in you. You can do this.” I squeeze back tears as I eavesdrop, not because I feel bad for the friend, but because I’m in awe of a man who can live with so little and still give so much hope. “Tell your wife we love her,” he says as he hangs up the phone and I feel desperate to serve him…to do something that would lift the weight he carries or make his day feel less like all the other days, but I all I can do is ask if I can get him anything.
He smiles and tells me the story of his friend and how he believes that guy is going to win. “He’s on the right track, Bo,” he says, “I’m proud of him.” If Steve is proud of him, than so am I. I take him iced tea with lemon because lemon helps him swallow more easily and I wish that tea was the magic potion that would build back his muscles and his voice and his future. But it’s just tea with lemon.
I’m not even sure why I’m writing about this tonight. It’s not to say that ALS is bad because no one needs another post about that, and it’s not to deify Steve. He’s a regular guy with regular weaknesses and many imperfections. I guess I just wanted to say to myself first of all, and to anyone else who might need to hear it: life is always possible. I’m watching my husband keep a relentless, heroic hold on life while standing in the of the valley of death. It might not look heroic on the surface, but that’s because I’m weak with the words…not because he’s weak in how he lives. He is strong. I think I’m just feeling pinched by the truth tonight that if he can really live, then so can I. And so can you.
We have strength in our muscles and breath in our lungs. We have jobs and arms and voices. We have weeds to pull and friends to cheer and hope to give. Let’s live.