Not All About Me

There's nothing like a degenerative illness diagnosis to make one obsess about oneself. I remember not long after getting the word that I have Parkinson's disease, my husband and I were crossing the street on our way to a restaurant when I tripped and almost landed on my ass. When my husband asked if I was okay, I started crying. He, of course, thought I was crying because I had hurt myself; I said no, that I was upset because I was starting to lose my balance already. (Loss of balance is one of the signature symptoms of PD.) He took me back to where I had tripped, pointed to a rather large pothole that I hadn't seen and gently pointed out that anyone stepping in that would have had trouble not falling.

Yes, so there's a long list of fun things to obsess about: physical symptoms, progression, who to tell about one's diagnosis, who not to tell, what to do when the time comes that you can't work anymore, the high cost of health care. There are certainly a lot more things to include in this list, but you get the idea. Besides, I'm getting depressed thinking about it. More importantly, that's not the point of this post.

What I'm thinking about now is what it must be like for other people, the people who care about me, knowing that I have this illness, and wondering about my future. Because while it's only natural for me to think about these things, I'm sure they do too. On top of that, I think that they must worry about how much to tell me about their own fears. Really, not many of them do, probably because they figure I have enough to deal with as it is. But actually, I really would like to know. So, here's an invitation to share those things, either by leaving a comment on this blog, or getting in touch with me offline.

And in addition to thanks upfront for sharing, I want to thank you for everything else all of you do for me, most of all by simply being there.

Magic Wand

Sometimes I find myself thinking about the strangeness involved in having a chronic illness. Not just the physical failings of your body, but how it changes you in a way that is difficult to describe. Trying to understand what it means right now, and what it will mean in the future is quite surreal. It's not as if this thing that you've just been told you have is going to kill you, at least not for some time, and the diagnosis itself is anything but definitive, because degenerative illnesses seldom have a set course. Terminal illnesses tend to get most of the press, I think because they are inherently more dramatic. Hearing someone say "I have cancer" has a very different impact than hearing someone say "I have MS," for example. Not that it's a contest and anything that forces an acknowledgement of the fragility of your body sucks mightily. But it seems to me that the psychology of the two is completely different. When one gets an terminal illness I would guess it must feel as if you have an enemy to fight, and that enemy either wins or doesn't. When you find out you have a chronic illness on the other hand, it's more like you have an unwelcome visitor; a visitor who has no intention of leaving, ever. So, you have to find a way to befriend it, arrive at a détente, or at least form an uneasy alliance.

But the thing that is really interesting to me is to think about what I call my magic wand question. Here it is. If someone had a magic wand and by waving it over me (maybe with some sparkly stuff thrown in for good measure) and make it so I never would have had PD, would I take them up on the offer? I want to be clear on the details of the offer – not that I would suddenly be cured, but that I would have never had gotten the disease in the first place. Poof, gone, never happened. And I have to say, I wouldn't take them up on it. Why? Simple, because I wouldn't know who I would be without it.

A friend of mine received his own life-altering diagnosis a few years ago. I think it was day three after he got the news, and he was in a really bad place. During one of our several times daily phone conversations, I said to him, "I'm going to tell you something and I don't expect you to believe me, but I am asking you to trust me; you will find blessings in this." Well, in the moments of silence that followed, I could almost hear his struggle about whether to tell me to fuck off right then and there, and possibly never speak to me again, or to do his best to listen to what I had to say. Through clenched teeth he replied with something that indicated he was less than grateful for the news. I told him in response that I wasn't in any way shape or form saying that it was a good thing that had happened to him and that I wished more than anything that things were different. But, I repeated, I'm going to say it once more at the risk of you hating me forever, because I want you to hear me. "You will receive blessings in this."

Well, long story short, we laugh about it now. He's told me that I was indeed correct in my speculation that it was all he could do in that moment to refrain from hurling a string of epithets in my general direction and then hang up the phone.

But it somehow stuck in his brain, and I think, offered him a bit of hope. Now we often talk about those blessings. And so will I, in future posts.

My Posse

Not surprisingly, in the short time since I posted my change of blog, I've received some incredibly touching responses. The reason that I say "not surprisingly" is that I am somehow fortunate enough to have some pretty amazing people in my circle. Well, I have never been as glad of that as I have been since my Parkinson's diagnosis, and most especially in the few months since I moved into this new chapter of my life. And I'm not just talking about the warm fuzziness of having great friends and a great support network. That, in and of itself, would certainly be benefit enough. But I'm thankful on a much more practical level; I know that there is absolutely no way I could have managed to get this far without them, without you.

So to those of you who have commented on my courage, I just want to say thank you, but it wasn't just me. It was you too. And trust me I am not being falsely modest here. A few weeks after I did the headfirst into the new, I was sitting in my kitchen repeating the mantra, "I can't do this, I can't do this, I can't do this." Well, I grew up in the S.F. Bay Area so of course I know that mantras are supposed to be "positive" statements. Whatever. But I knew in that moment that there was absolutely no way I could do this by myself.

This may surprise those of you who know me personally, since I do have a tendency to talk about my stuff to death, but I do not like to ask for help. My realization at that moment in the kitchen though, was that I had no choice. It was a bit sobering, not to mention, um, terrifying.

Well, there is a good thing about stark reality, it kind of puts things into perspective, highlights one's choices, so to speak. So I bit the bullet and made a list of people and what they were good at. And then I did a whacky thing. I asked these folks if they would help me. And, wow, they said, sure, of course, would love to, what can I do, was wondering when you would ask. This is not to say that once I had that transformative moment, everything was all peachy, as highlighted in my cursing at God post. Regardless, people continue to show up for me.

What you don't necessarily consider, or maybe I'm just a bit slow, when you ask for help and people say yes, is that you kind of have to do your part. There's always a catch. So, during one of my less than brightly optimistic moments as I yet again considered giving up, I thought about my responsibility to the people who continue to express their faith in me and I imagined their responses if I called it quits. Then I made a list (which continues to grow, by the way) of those folks, and I wrote the following document, which I keep prominently in front of me as I work.

Angela's Do Not Disappoint List

The names appearing above are people who care about me, believe in me, have "shown up" for me in one way or another (some in rather remarkable ways), and expect me to "show up" as well. They want and expect that I will be successful. Success here is defined as showing up, doing my best, not giving up, listening to my voice, following my gut, paying attention and telling the truth.

I have wanted to be a writer, for probably even longer that I consciously realize. It's my calling, it's what I love, it's what I am good at, it is the best way for me to help others.

I will not quit. And when I am tempted to quit I will look at this list and imagine talking to each and every person on it and telling them that I have decided to give up, that their faith in me was misplaced. Charlie, of course, will be standing behind me, sniggering into my ear.

Fortunately, I won't have to do this, because quitting is not an option.