A friend posted a video today about a woman with cancer who's friends and family shaved their heads in solidarity and posed for a photo shoot. It was beautiful and I must admit that I teared up. The outpouring of love and support she received in that act was touching. But part of me was also sad. Sad because for so many in similar situations that level of support will only ever be viewed vicariously.
Serious and chronic illness is a litmus test of our relationships. The bonds we have with friends and family are laid bare and many come up lacking. It quickly becomes clear who values you and who doesn't. It quickly becomes clear that bonds of blood and time are not indicators of support. It can be a hard pill to swallow. And, as my reaction to this video reminds me, it is something with which I continue to struggle.
Part of me still wants and expects that certain people will step up. That they will suddenly change their behaviour and act even partway like the people in that video. If past behaviour is the best predictor of future behaviour I should know by now that it's never going to happen. But part of me still hopes. And old hurts are opened anew. You'd think at age 40 I'd have come to terms with those hurts. But instead I sit here musing over feelings that seem to be sitting just below the surface waiting for something to prompt them to rise again.
I'm not alone in these feelings. I've spoken with many other patients who experience the same hurts. Dysautonomia is not a casserole illness, even at the best of times. It's hard to understand, and has no cure. It can last for years and the deterioration can be slow and punctuated by repeated exacerbations. Sustaining the momentum of caring can be exhausting. And yet some manage. When I see others who are surrounded by numerous loved ones, lifting them up and going out of their way time and again to support them, it brings home that that is not my experience.
Some days I am better at dealing with the hurt and others it is hard. I wish I knew the secret of how to let those hurts go. To move on and focus only on the few who have stood the test of time. The true gems in my life. But part of me continues to gnaw on those wounds. To pick them apart and poke them till they bleed.
Illness is a lonely process. No one can share what you go through. But they can provide support. It doesn't take much. A phone call. A text. A silly joke posted on Facebook. A reminder that they are thinking of you, and that they care. A reminder that your life and your experience matters.
It is hard to understand when that doesn't happen. It goes against how I would act should our positions be reversed. When they have been reversed.
I am grateful every day for those who show they care, online and in real life. For those core people who make me feel loved and safe. Who hold my hand when I need it, instead of expecting me to hold theirs because my illness is a burden to them. For those who offer their concern and care and don't tell me how much of an imposition or hardship it has been for them. For those who know what I deal with and how I deal with it, and don't flit in only to tell me how to manage my illness that they nothing about, before flitting out again. For those who give me dedicated time rather than the scraps left over from their busy lives.
I'm going to work on letting those people and the hurt they represent, go.
I'm going to focus on the few who matter. The few who bring love and joy into my life.
I'm letting go of the rest.
I'm going to give myself
of starting the process.
To end expectations.
To end false hope.
I'm going to heal
I'm going to heal
and shake off the burden
I need to.
I have to.
I'm letting it go.