How do you keep going?

A question

I received a note that asked, “What keeps you going? I'm just feeling so weak and lousy right now, I'm not sure what to hang on to.” I needed time to process this. In fact, I’m processing here on the page and have spent quite a few pages in my journal and at least two showers on this question.

The easy answer is, “Because I have to.” There is a scene in the movie "Parenthood” with Steve Martin and Mary Steenburgen in which they argue. Gil (Martin’s character), in a moment of frustration and anxiety, tells his wife Karen (Steenburgen), “My whole life is ‘have to’.”

Gil is an anxious father striving to balance work and family, feeling that responsibilities rather than choices dictate his life. Cue eldest daughter syndrome, alongside a heaping dose of trauma, and the hypervigilance of “have to” is amplified to the point that even thinking about not keeping going brings about a crisis of epic proportions. It is a never-ending cycle of two steps forward, ten back, trying to reconcile the past with the present, and prevent the often unavoidable in the future.

Photo by Fiona Murray-deGraaff on Unsplash

It is not sustainable. No matter how much we would like to think it is.

It’s one thing to look at this question through the lens of grief. Another through the lens of chronic illness and pain. My sister has MS, and this is something we have discussed at length. The incredibly active lifestyle she lived before has been cut in half. She knows that her type of MS involves steady, worsening disability. I see the changes every time we are together in person, and I hear them in her voice. Little things most people would not pick up on. Her gait has changed. The sway of her hips when walking, always more heavily pronounced like a fifties screen siren, is now heavily diminished. The fatigue that comes across the phone.

She is an involved mother and Gigi. When we went on a girls’ trip recently, she used her hair tools and styled my hair as gently as you would a toddler's. I cried while she fixed it and still cry thinking about her hands taking care of me.

Hers is not a have-to, but a want-to, as she is able. She has a wonderful partner who will do anything for her. He married into our family, so I suspect that one day he will qualify for a form of sainthood in which eternity gives him never-ending buckets of icy-cold Miller Lite and golf balls.

She knows that her time for many things is limited. This includes her years left here. We are pragmatic and have discussed what this disease has done and will do to her body. It’s not something I like to think about. This is my baby sister. My Pooh Bear. The person who said, “Do you need me?” when Tony was dying, and made a nearly two-hour drive to the hospital in 45 minutes. (I don’t want to know, I’m just thankful she didn’t go to jail.)

What keeps her going is willpower. Plain and simple. She has absolutely awful days where she cannot get out of bed. Or shouldn’t. But she does. She may change from her night pajamas to her day pajamas, and not do her hair and makeup, but she is up. The makeup is a huge thing. I have always been the one least likely to wear makeup —just tinted sunscreen to tone down the pink — and am not one to accessorize or do all the “things.” She is. That is when I knew how bad her disease was — when she showed up without makeup and her hair in a ponytail.

She gets up because she wants to. She wants to live life to spend time with her children and grandchildren, no matter how much pain she is in. Is she pleasant all the time? Absolutely not. It’s best not to poke the bear and leave her be. But nothing has diminished her love of life or her love for her family.

As for me, I write in my gratitude journal every night. And every night for nearly two decades, I have written the exact same sentence as the final line: “I am grateful for this beautiful life.” It’s not a ploy, nor wishful thinking. I am truly grateful for all the things, good and bad, that life has thrown at me.

I don’t know what my purpose is here on this earth. I hope to find out one day. But I do know that if it were all to end right now, even with all of the things I still desperately want to see and do in this lifetime, it would have been pretty grand. I have a wonderful family and friends all over the world who love me, a child I never thought I would have, and I was deeply loved.

So, to my friend who sent this note, we only do what we can do. Some days — some weeks — are much worse than others. If that’s time under the covers with a heated blanket and pain meds, that’s a successful day because you are showing up and taking care of yourself. Tony always said, “You have to check your vibe and keep moving forward.”

Sometimes the vibes are all we have in life.