Eric Tapley

My mystery rash – let’s not call it poison ivy any more – first appeared on July 22nd. It’s been nearly a month of dealing with this unknown, recurring, mystery thing. It’s painful, itchy, irritating, hot, prickly, and makes my skin feel tight. At times I feel short of breath, almost as if I can’t take a deep breath, and that’s scary. Behind my elbows and knees, and between my fingers, my skin has become inflamed and sensitive and bleeds now and then from the chaffing. When I wake in the morning there is often a little blood on the sheets from my legs.

But I can’t stop moving or using my hands or walking or living. I have to move forward the best I can.

All of this is starting to get to me. I’m trying to be optimistic but I feel a little lost. I’m losing track of tasks that I need to finish, I don’t have the same focus or drive at work (which is in large part due to the medication I’m on). The days seem to bleed together, and on top of it all I’m not sleeping well. Each of these feeds the other.

I constantly worry that this is in fact contagious and that Sam will get sick from it. I’ve had nightmares about that. I obsessively wash my hands an am incredibly careful every time I play with him. I use a separate towel to dry my hands and even have a ’sick sheet’ I put on the couch when I sit there so, just in case this is infectious, even just a little, I’m not leaving residue around.

Even still, he has some kind of rash. The doctor said it’s unrelated, something called “prickly heat rash,” and that he’s fine. But I worry and don’t feel any better that she’s given it a benign name - what if it is from me?

During my long years of battling Colitis I experienced this kind of depression frequently. It’s the unknown that gets to me – I don’t deal well with situations in which I feel helpless or out of control – and with a good long walk and a little reflection I’m able to pull through and get back to a positive, optimistic place. It’s just hard sometimes.

It’s hard right now.

I’ve continued to make steady progress in the last week and am beginning to feel really good for the first time in years. I’ve spent a full week at work without trouble, my incision is looking great and I have very little to no pain there most days, and I’m even beginning to look toward the future again and plan things for my personal life and my business. Cool.

So where does this leave the future of this site? It doesn’t make sense to keep an ongoing “health update” section on the front page, so I’m going to redesign and refocus the site over the coming months. This will give me a chance to do the following:

1. Move health information to it’s own section, and expand on this to build a resource for other people with intestinal diseases.

2. Expand upon the photo gallery.

3. Learn some more advanced XHTML, CSS, and DHTML.

4. Refocus the main site on other interests. I’m not sure what I’ll blog about yet, though, maybe business thoughts.

Stay tuned for the changes.

It’s been almost 10 days since my surgery and I’m doing very well. In fact, I returned to a light work schedule this week and tolerated that without a problem, in addition to the light exercise and normal meals I introduced when I returned from the hospital. It will still take months for me to make a full recovery but I’m well on the way and it looks as if my years-long struggle with Colitis and related intestinal problems are finally over. Which begs the question: now what?

Oh, I know that Kate and I are going to be parents after the first of the year (I couldn’t forget that!), we’re still getting settled in our new apartment, and there’s always 3000K to pour energy into. That’s not really what I mean. I’ve defined myself by my illness for so long, and filtered every action and plan through the “what if” machine, that I don’t really know how to be well anymore. What is it like to wake up and not wonder if you’re going into the hospital that day? To be able to just eat, and not worry about the impact that food may have on your intestines? To live without constantly wondering about an upcoming surgery, or doctor’s visit, or medical test?

I’m a fundamentally different person than I was three years ago before I became sick. Physically I’m a different person than I was even two weeks ago, with more options and a brighter future.

Now I have to learn how to be the new me. The first step is going to be figuring out who that is.

How’s your life? (Be honest.)

Why the hell didn’t you say “Great!”?

I keep thinking about value, and meaning, and what makes a good life. Not necessarily a good life in the sense that someone else would define it as pure, or purposeful, or following some set of socially defined moral guidelines. I mean a good life in that I’m happy and that what I do has value and meaning for me. Maybe along the way I’ll make a difference to other people, too, but living for someone else can’t be your primary goal or you’re not really living, you’re acting out a script.

Lately I’ve been reading quite a lot, to help pass the time as I recover from surgery in a more fruitful way than watching marginally acceptable TV shows. And I want to share a really cool manifesto I read on being creative. I think it’s worth reading, if you can spare 30-45 minutes, and isn’t really a “how to” so much as a “wake up and think about your life in these terms for a bit” manifesto.

How To Be Creative, a manifesto published at Change This. It’s free. And good. Enjoy.

It will be interesting to see how my definition of a good life changes once I’m a father. Stay tuned.