There's a host of hyper-quotable lines in The Princess Bride, but this one is most often on my mind. The cruel Count tells the evil Prince Humperdink, “Get some rest. If you haven't got your health, then you haven't got anything.”
It's a brief moment of irony among two fictional villains, but it's painfully true in the real world as well. No matter what you have in this lifetime, it's difficult to truly enjoy living if you can't achieve a reasonable baseline of good health.
Anyone living with a chronic illness that impacts their daily life will naturally see that quote through the lens of their illness. “Good health” for me might be untenable for someone else, or vice versa, but there's something deeply integral to our pursuit of happiness that must include the pursuit of greater wellness.
I think about this a lot lately. When I wake up in the middle of the night, worried, I try to lie still and quickly fall back asleep. It doesn't always work, however, on nights like tonight. Some nights, I worry too much. Or I find myself thinking too much about the sleep I need to function the next morning.
Some nights, I feel far too guilty for needing sleep, for needing better health, and for not yet achieving “enough” or “better” status.
On nights like this, I think about that quote from The Princess Bride, and I wonder if I ever could have guessed how these thoughts would keep me awake. I think about being 14, at the mere beginning of my lipedema symptoms, and I wonder how that version of myself would have seen my body today.
There's a lot I wish I knew earlier about the importance of seeking our best health. I wish I hadn't grown up with the feeling that my pursuit of better, even decent health would be selfish.
I spend most of my time these days focused on my health. It's ironic considering the way certain critics have accused me of the opposite—not caring at all. Or the way lot of people look through me at the Y, like I'm some sort of non-person who never gave a damn about their health.
For many people, I suppose it's much easier to believe that people like me only got ourselves into these situations by being lazy and irresponsible. I doubt that many people want to think about the reality that any one of them could become disabled or receive an unexpected (and undeserved) blow to their own health.
We all expect, or at least, hope for life to be neater or somehow “more fair” than that. None of us can really know what the other side of life is like until we find ourselves in the group we never imagined ourselves to be.
I am learning far more about people now than at any other time in my life. I know what it's like to be forgotten or seen as a completely different person just because my body doesn't look or behave as it used to. I am learning much more about empathy and giving other people the benefit of a doubt. I'm learning a great deal about loneliness—that awful feeling that there is no one on this planet who can understand your hurdles. I'm learning all about isolation and the way that in itself can rob us of our health.
Perhaps the worst thing about a chronic health battle that demands so much time and attention is the way it leaves a person feeling so… useless. I feel useless when I can't really be much of a help to anyone else. I feel useless when I'm not able to produce the work I care so much about.
Personally, I feel very useless when I try to reach out, but am met with crickets in return. It's hard to apologize for being unable to do more, to even be my old self, only to receive silence.
On those occasions, I try to remind myself that I am not the only person going through something. That the people I care about but am not hearing from are going through their own battles, too. I tell myself that it might not always be this way.
Then, I remind myself to keep moving. To keep seeking out my better health. To keep doing my best to treat this disease. One day, I believe that all of the pain will be useful. I think I'll be able to do something for somebody else once again.
Shannon, you are an incredible mother, not useless. Give yourself credit! ❤️
Keep on going. Your illness took over 30 years to develop. It requires extreme interventions and you have done that. It must be so frustrating to need even more. But it will get better. You have to believe it.