I’m thinking this morning of all of the time we’ve spent together. Thirty and a half years. That’s not a short amount of time at all. We’ve been through so much.
It would be silly to say I couldn’t have done any of it without you because of course that’s true. I do not exist without you and you do not exist without me. I am you, you are me; we are the same. No matter how much this society and culture tries to tear us apart—to differentiate between us, body and mind—it can't happen. We are one.
I am grateful to no longer hate you/us. I spent so many years living with that hatred and for what purpose? I’m sorry for all of the pain I caused when I did, blaming you/us for illness. I remember very clearly a moment when I realized we were in this together. During the echocardiogram, watching our heart beat so quickly on the monitor, realizing it wasn’t beating fast out of spite or to cause harm, realizing it was simply doing its job in the way that it could, pumping blood with its nutrients and oxygen and everything else where it needed to go.
And when we got sicker, when our stomach and digestion slowed, I was so relieved to not hate us. I was so relieved to remember the lesson of the echo. To remember that we’re all just trying our best. And our best is the most we can do.
It is easy to love my sick and disabled friends. It is hard to love one’s own sick body.
I have to remind myself of our worthiness of love most days. And while I know I am loved by others, really the struggle is reminding myself I’m worthy of my own love. I have been working so hard to unlearn the lie that I’m a burden to those who love me. It is also work to remember I am not a burden to myself.
This belief is more challenging, more deeply rooted, harder to dig up. I must continue to remind myself—especially when it is hard to do even the most seemingly basic of tasks to take care of myself—that I am worth it, and even more than that, that it is no trouble to do it for me.
But how is it no trouble when it is clearly some trouble? This part I haven’t figured out yet. Perhaps it is less about it being no trouble, and more about how I am worth the priority in the effort? That caring for myself is the most important task I'll ever have? That it is more than ok and absolutely encouraged to ask for help when I need it, to provide ways for those who love me to care for me?
I don’t know. We’re still figuring it out.
One thing I do know: I love you.
I love you in every rapid heart beat, wince of pain, dizziness spell, drip of formula through our feeding tube, sweaty night of sleep, stretching out of numb limbs to regain tingly feeling, twinge of skin irritation or itchiness, worry for the future, etc. I love you in our best and worst moments. I love you when you do the right thing and live up to your values. I love you when you make mistakes and learn from them. I love you when you choose momentary joy and pleasure. I love you when you try to plan for the future. I love you always.
Thank you for doing our best,