July 21-B: Illness as a self definition

So, I'm lying on the sofa, in my usual state of evening pain, thinking about the response of 'anonymous' who says "Don't let your illness define you--move on!" And I started getting pissed. Because this is the kind of comment that people frequently either say, paraphrase or hint at, especially since I don't look sick. It's the kind of comment that people who have never dealt with being sick can say so blithely, because you really don't get it. So, rather than be pissed, I'm going to address the comment. Because, as I've stated a few times, while the blog was initially established as a way to disseminate information during the surgeries, I see it now as a charting of one person through a critical, chronic illness. In which case, I hope to give some insight into a way of life that--I hope--few will ever fully appreciate. Maybe it will help someone understand another person they encounter, be more compassionate. So here it is....

Within the first few hours after I saw my first echo and realized that life was never going to be the same again, I made a promise to myself: I was not going to be one of those people whose illness was the definition of who they are. Yes, whoever said that echoed my thoughts (although I think it's in a prior posting from a while ago). While this was a noble thought, it wasn't practical, although I didn't realize that at the time. Because being ill isn't like other things that you can adjust to or "get over": it's not being bullied at school or work, it's not being passed over for promotion, it's not getting over a relationship, it's not even like a loved one dying. Because it's not something that you can get away from, ever. No matter how much you don't want to think about it, it's there. Omnipresent. In your bed, your bathroom, your car, your job, your dinner.... You can't get away from it, because it's in your physical person. And it DOES define so much of your life, because being chronically ill is a constant that everything else has to fit around. It doesn't stop being an issue because you have something else going on in your life, you're taking a test, or you just want a break. You adjust to it, it doesn't adjust to you.

Every single day I am in pain: I wake up in pain, I go to bed in pain. The hours in between vary. My chest scar is looking pretty good, but it is covering a rather significant 8" plus hole in my sternum. You can, quite literally, put part of your finger into my chest in the long hole left by repeatedly being sawed open and having my whole chest cavity pulled apart over and over. It affects how I move: I can't push up from a chair, much less the floor, without pain shooting through my entire upper body. It hurts when I cough, sneeze or even laugh. I still grab my chest when I laugh. Holding it together, restricting the movement, keeps the pain from being quite as bad. Despite that, I try to laugh as often as possible. I can't sleep in any other position than on my back, rolling on my side hurts too much, because the sideways pressure on the ribs pushes into the unstable area. Before I stand from sitting or the couch, I roll one shoulder forward to decrease the pressure on my chest. To get out of bed in the morning I tuck forward, grab behind my knees and roll to the right. Reaching up above my head is painful, whether washing my hair or getting something from a shelf. So every movement I make with my upper body ends up being affected by the large crater in my chest. But it's surprising what you can get used to when there isn't an alternative.

The right back, around the shoulder blade, is also still painful on a pretty daily basis. It doesn't hurt as much of the time as the chest, but it's usually more severe. Any movement of my arm away from my body makes it hurt when it's acting up. Try functioning for an hour keeping your arm from your elbow up in contact with your body and see if you don't have a different perspective. And there's where the large chest tube came out of my right side from the same surgery--it hurts as well, especially if I've pushed it that day. Even leaning against the arm of a chair gives me a jolt of pain. But it's all relative: the pain I have now is a lot less than even a few months ago, although it's doubtful it will ever be gone. Some days are better than others.

I still haven't completely adjusted to the constant clicking of my metal heart valve. Also impossible to avoid noticing when it's inside you. The repeated surgeries stripped the pericardial sac mostly away, damaged my lungs and all the internal chest structures. It also seems to have affected how much I feel my valve, because whenever I'm lying on the couch or in bed, I feel it like the ticking of a watch on the back of my throat. And, for whatever reason, the noise gets louder sometimes, even during the day when I'm doing something else. This, they tell me, isn't normal, but is the result of not having a "normal" course of valvular heart disease. Several mechanical valve patients have told me it took about two years to adjust to the noise, so hopefully it will get better.

And then there is the joy of being a pre-menopausal woman on blood thinners. If you don't get the picture, let me spell it out: monthly periods===>bleeding with thin blood. Pause for a second to get the "EEwww" out of your system. And I can't take the pill, which I did really well on, because it increases the chance of clot formation, which is what you want to avoid at all costs when you have a mechanical prosthetic in your body that likes to collect clots and then release them into your circulation where they can get caught in nasty places, like your brain. So, when I cut myself and bleed all over, I remind myself that it's still better than having a stroke. I repeat that a lot when I see the bruises all over my body as well, which I do my best to cover with clothing.

All of this is over and above the daily fatigue that, while better, will haunt me for the rest of my life. That's due to having a valve opening the size of an eight-year-old trying to support and adult sized heart and body. But, honestly, the fatigue is the easiest thing to take, because I can function with that. But searing chest pain with more than half my movements, even breathing--that's difficult to ignore.

So, yes, I am defined by my illness. I am, by nature, a positive person, which has gotten me through this along with a deeply sarcastic sense of humor. It's what I usually write about here. But the first anniversary of the fourth time I got my chest cut open and my heart stopped was, to me, a big deal. It was a giant hurdle, physically as well as emotionally. For the most part I look at how much better I feel than after the first two surgeries, or this time last year. I'm learning how to adjust to a life that no one can ever plan on. Remembering how much better off I am than so many others who are ill. But everything: my plans, how I move, how I breathe, is restricted and defined by my illness. It isn't who I am as a person, but it does define how I live my life: month to month, day to day, minute to minute. And that is something I can't control. All I can control is how I choose to react to it. And some months/days/minutes are just better than others.

So, you insensitive twit, I can't just 'move on'. No one who has a chronic illness has that luxury. You deal with it, you adjust, but you can't ever leave it behind. It is what it is. And it sucks.

Laurie