I used to wear my heart on my sleeve for all to see… and comment on. Not that I wanted to. Who am I kidding? I still wear my heart on my sleeve for all to see… and comment on. Not that I want to.
It is a curse, one might say, to be so vulnerable. It is a curse in the sense that you want to keep the feelings that are so deeply felt, hidden away so no one can see. Really, so they can’t mock or tease or condemn. At least it feels that way sometimes.
It is a curse in the sense that you want to keep those feelings that are so deeply felt, hidden so you don’t have to deal with them. Feelings of loss. Feelings of isolation. Feelings of inadequacy. Feelings you have when you have what others don’t. And you want to keep them hidden because they don’t, they won’t, they can’t understand.
Lou Gehrig’s Disease.
Unless you’ve got it, or a disease like it, you won’t, you don’t, you can’t get it. You can’t understand. Not that you don’t want to, but you just can’t. Not fully, anyhow.
You can sympathize, you can pity, you can encourage and support, but you can’t understand. And so, some try to empathize, rationalize, apologize and humorize the situation. But sometimes, it’s not funny, there’s no rational reason one awakes day after day to face their foe in the mirror, nor is it anyone’s fault that they or a loved one suffers with a disease.
I guess I’ve felt a bit frustrated of late, feeling as if some people in my life ‘don’t get it’. I get to the point that I don’t want to even mention PD because it is viewed as an excuse for pain, stiffness, memory loss, or any other ailment I might be experiencing at the time. Sometimes it seems that the fact of my disease, being ever present in my body, has disappeared from sight to the outer world. Yet, I know it is there as it hides within and can definitely be felt moment by moment.
As recipients of a disease or illness, we try when our bodies and our energy levels permit, to do what we are able - garden, write, work on cars, play games, socialize… We have a new vision for the short time we are allotted here on earth and strive to make the most of it. There are some days we feel we could climb a mountain ( a little one) and there are other days when we know we can’t even walk to the base of a hill. It may even hurt to glance upward to look into the sky. These are the days when sometimes others watch us (me) and I wonder if they think PD can’t be so bad. Look at her! She’s digging up flowers! No one with a disability would have that much energy or strength.
To be fair, I often don’t, just as others I know with PD don’t. We push ourselves in the tasks we yearn to function in and finish because it feels good to be used, to be useful, to work, to move. Yes, we push even in the pain because, at least for me, the pain says I’m alive, I can still do it - today. And yes, it also cautions me to take it a little easier, but not so easy that all that is left is to sit and watch life instead of participate in it.
I may wish to hide what’s going on inside, but I’ve never been good at it. I wear a feeling of loss at times, because the fact is, I’ve lost something - control. And I wear a feeling of isolation - a feeling of being alone in the fight. I wear inadequacy by feeling I can’t do, can’t offer what I used to. Everything’s just a little harder to accomplish. But as hard as things may be at times by dealing with something others can’t understand, people mean well. They intentions are honorable and they are trying to deal with this intruder from a different angle: it’s taken a part of the one they love or it’s trying to.
So I guess I’m thankful that sometimes I wear my heart on my sleeve because sometimes I don’t want to give this monster any more attention and talk about it. But sometimes I need to and that’s when someone asks how it’s going and if my answer is a little less than accurate, they glance at my heart laying there bare for all to see and re-examine my answer.
You sure? they ask after receiving a less than convincing ‘Okay’ response.
Fine. You’ve got me. I’ve got PD and no, I’m not okay. Today I just really need a friend.