Show Up

We’ve been speaking quite a lot lately in my rare disease communities, about loss. Not only the loss of our dear loved ones with the disease, but the loss of so much more.

It starts with diagnosis; anticipatory grief kicks in when you realize everything you thought was true isn’t. With the loss of health comes the insecurity of not knowing what tomorrow will bring, financial worries, worries that you won’t be able to handle the caregiving responsibilities, fear about what it will look like to do life alone. What will it look like to lose them?

But it’s not just the patient, or your capabilities you are losing, it’s your own sense of self. You lose the very person you were, changed irrevocably forever. If you are very, very lucky, the person you were is forged into something stronger, more resilient. If you are not lucky, you fall apart, shrink into a version of yourself that can’t cope with people, with life, with waking up everyday to the same reality. Who am I kidding, the latter happens to you, anyways, but if you are lucky, you can just touch the bottom of the pool of despair with your toes, and keep your chin above water.

But perhaps the most puzzling loss of all is the loss of the people you thought would be there for you through thick and thin, but that fall away, stop calling, disappear like the future you thought you were planning for, the one you thought you were going to have. The friends and family members you did life with, the ones who are a phone call away, always up for an adventure, the ones who would do anything for you. The ones who were the first to offer their prayers, their wishes for improved health, the care emoji on your posts, are often the first to fade out of your circle.

Usually with nary a word, but sometimes, especially with the family who don’t have a better excuse to bow out, with harsh words, a fight picked, some slight created by you, of course, that gives them a reason to back away. And they usually don’t come back. It’s death by a thousand cuts, or maybe one big one, but it’s as final as any death I have ever known.

We tell ourselves it’s probably because it is just too painful for them to stay in our circle, they don’t know what to say to us, they don’t want to be tapped for help with the caregiving, or God forbid, we need MONEY and they don’t want to be around because they think we will ask them for it. Maybe we have just changed so much they no longer have anything in common with us. Maybe all of the above is true. Maybe it is something else entirely.

But true also is that we almost always have that one person who reaches out, sits with us in our pain, says the right things, or says nothing at all, just holds us with strength in the face of our weakness. If you are very, very lucky, there are many such people in your life. The sister who calls you in the morning to make sure you got out of bed, the friend who sends you morning devotional messages to inspire you to strength. The friend who offers to come and sit with your person so you can get out of the house for a few hours. Or take a nap. The neighbor who mows your lawn for you because they know you just haven’t had the time or the heart to get out there and do it like you usually do. The complete stranger in line at the grocery store whose grandmother had dementia, so they recognize the signs of a caregiver on the edge, and is incredibly kind when your person is rude or unruly waiting their turn in line.

But many, so many, are not very, very lucky. They are drowning in sorrow, alone in their caregiving, while surrounded by people offering their thoughts and prayers, but at the same time, turning their back on the great need right in front of them.

I tell you these things not as an admonishment, though if you recognize some of these traits in yourself and regret them, it’s never too late to intentionally reach out to that friend who is drowning and pull them up out of the pool for some respite. I sit here in gratitude for the people who showed up, and showed me who they were. I am even grateful for those who didn’t show up, because it clarified exactly who they were, and what we meant to them. Or didn’t. Grateful to be rid of the burden of uncertainty of where I stood with them. Grateful to know the heart of the people I am surrounded by, even if their hearts were not for us.

Even the very strongest of us need care and support. Maybe you know somebody who needs a hero. Maybe you can be their hero. It takes even less than you might imagine to be that hero. That tiny kindness might be the difference between a nose above the water line, or below, but know that YOU have the power to make a HUGE difference in the life of someone who is drowning in sorrow. Just by showing up.