Living Life in Limbo

Waiting. We all do it. We wait in line at the grocery store, the department store and the DMV. But these are all ordinary types of waiting. What I’m talking about is waiting in limbo—that time many of us have experienced where we have seen our doctor, taken some tests and are now waiting for doctors to get together and confer about our issues and what the possible fixes might be.

This is where I am at right now. I’ve had tests, my team here in Connecticut is compiling my history and recent testing, and sending it to another hospital to be reviewed. When my teams get feedback they will get together in a group and talk about it. They may decide they need more information, which means more testing for me. Then they will get together again, review everything, and come up with a solution. What that means for me is a few more weeks or more of limbo.

I’ve been here before. I went through this same process seven years ago. My healthcare providers talked about the possibility of surgery and of transplant, while I sat around and waited for them to figure it all out. I know from experience that dwelling on all that dark stuff is stressful, to say the least. Do it too much and it will give you a nervous breakdown. So what do you do? How do you get through it?

For me, it’s been about filling my brain with new things. Looking at things in a different light. I could sit around and wonder, why me? We all could. I don’t think anyone would blame us. Instead of thinking of this time in my life as a time of stress and worry, I choose to look at it as a time to learn, try to experience new things and do some old things I didn’t have the time for. After all, I can’t work anymore so I have the day to do with as I like. This is how I deal with limbo.

I go for a walk every morning (doctor’s orders) and I take three things with me when I go. My dog, because no one likes to be alone and he needs the exercise, too. My camera, because I love photography. And I take a sense of curiosity. I try to look at the world in a fresh way every day and I am constantly amazed by the things I get to see, simply because I am curious enough to look.

When my walk is finished I make myself some breakfast and look for new recipes. Lately I’ve been into baking. The house has smelled delicious these past couple of months and I’ve had to be extra careful about my portion control. I go through any photos I took and delete or edit them. Then I may hit Facebook for awhile or bake. I make myself lunch and am pooped by now, so I eat and take a nap.

When I wake up one or two hours later I will pick up my guitar and play a little. I try to learn a new song every week. Then it’s either start dinner or Facebook for a while until dinner is ready. I am addicted to Facebook, so it’s always on in the background, even now.

After dinner I get together with a fellow CHD adult, a young man with whom I am currently working on an idea of his to start a Facebook group for CHD athletes. After this, I’m beat and I may watch a little TV and go to bed.

These are the things I do—the way I fill my day. The way I keep from thinking about the what ifs. The way I choose to keep the worry at bay. Maybe you don’t like any of these things. But please, if you are in limbo, if you are waiting—find something, anything, that you might enjoy and can do and do it. Remember, a happy patient is a healthier patient.