Monday, June 28, 2010

Reflections on Lyme

Lyme has done some awful things to me. I think the worst are the feelings of despair, anxiety, loneliness. The physical symptoms are not permanent. And although it is sometimes hard to believe, the emotional and psychiatric symptoms are not going to linger forever either. No one can understand how disabling this can be if they haven't walked this path. If I said I had cancer or MS, I think people would relate ("oh, so and so has that"). We've made those illnesses a part of our vernacular. Chemotherapy is almost universally understood. As a society, we know what to expect when someone gets those diagnoses. We are compassionate, sympathetic. I know when my dad was diagnosed with cancer, people came out of nowhere with cards, meals, time. Lyme is not yet seen the same.

Late-stage Lyme is debilitating. But it is invisible. There is a great website called "But you don't look sick" that has some great stories about perseverance through invisible illness. I've been called a hypochondriac by people who claim to love me. That's heart-breaking. I sometimes don't have enough energy to get out of bed to make dinner. I certainly don't have the energy to convince someone that my whole body hurts and that I have fatigue that can only be temporarily overcome by several large cups of coffee. I've realized that putting on that front though only makes it less obvious that something is wrong.

I don't want to be a burden to those I care about, so I try to minimize my complaints. But truly, I feel very alone. When my dad was sick, I felt there was no other choice but to move in with him, make sure he was cared for, that healthy food was on the table, that he didn't have to worry about driving home from chemo. Where is my caregiver? I don't mean for that to sound desperate or clingy. I guess I just don't understand. I would do anything for friends and family. Quite frankly, I have, sometimes to a fault to where I haven't left anything for myself and my family.

I am ready to be healthy again. I want to have non-caffeinated energy. I want to be able to work out without feeling crushingly fatigued from lifting ten pounds. And I want a social life back. I know it takes time to maintain friendships, and I feel like I have lost my ability to do that. Mostly I'm just tired of being alone. And being sick is just one more reason for me to feel distant from others.

Tuesday, June 22, 2010

A few things I'm glad burned up

One of the themes I considered for my book is holding onto things that no longer serve a purpose in your life. For me, the fire freed up energy in a way by burning up that which had become draining on me psychologically.

For example, I kept letters from my ex-boyfriend. (I'm fairly certain that he doesn't read this blog, but I wouldn't be surprised if his wife does.) That relationship was toxic for me. We started dating when I was 15 or 16. I thought I was madly in love. It's an unfortunate plight for a boy-crazy teenage girl, to be so easily in love and convinced that her high school relationship can withstand adult problems (like my dad being diagnosed with stage IV lymphoma). I had dozens of letters between us professing love. Honestly to read those letters as an adult is to make your heart puke. Emotions like that don't exist outside of ages ending in -teen. I was sad about the loss of these letters for a long time. It wasn't that I needed them for myself. But I thought they were great writing material. But really, when I think about it, the loss of these letters is good. I don't need my ex-boyfriend's love letters anymore than I need the angsty teenage notes written in Spanish class. Even more, I don't need my kids or grandkids reading those one day!

I've also been really sad about losing the pearls my dad gave me when he was sick with said lymphoma. I have a few of the charred pearls remaining (after convincing the insurance company that "no, you don't need these. They aren't worth anything to anyone but me.") Our relationship has always been a little strained, and the steroids he took while undergoing chemo did little to repair an already tenuous bond. He gave me those pearls as a way to thank me for giving up my summer at 18/19. I decided that they implied an apology for things I thought he ought apologize for. That was my own meaning and not what they were at all. Their charred nature is perhaps a better reflection of our relationship than the near-perfect off-white balls that existed before.

I will include one more object, though this list is not exhaustive. When I was 13, my mom painted a box with pansies on it. She shared this love of pansies with her grandmother, to whom she lived next door growing up. She wanted to share it with me. When I was 16, I got really, really mad at her. Really mad. And I gave her the box back. I didn't mean it. But I knew it would hurt her. It did. When I asked for it back, she wouldn't give it to me. It was an incredible lesson in doing things in anger and recognizing the consequences. You can't just take back your actions. I eventually did get the box back, and it held jewelry and other tokens of my life throughout various stages. I'm not glad I lost the box per say, but it also was an object that held both positive and negative memories, and its loss did not diminish the experience. Maybe that box in particular is an example of how I don't always need the "stuff" to carry on the lesson. For what it's worth, my mom just finished another box, although bigger, and it now sits next to my bed as a reminder just the same.

Monday, June 21, 2010

A love letter to my family

I meant to get to this yesterday, but Kellen is really sick. He has another ear infection (that's five or six so far in so many months). We spent all weekend in bed with him with a fever of 102-103. It was bad, for all of us.


I don't know if I ever had a visual of what my family would look like. I just knew I would have one. It's the same knowing that I've always had about my place in the world. I always have felt like I was meant to do something big, be something more, contribute in a way that is easily recognizable to others. It's sometimes hard to feel like you can do both, raise a strong, healthy family and do something big. But I believe it's possible. Usually.

I always had a pretty strong feeling about who my partner should be. Tall, educated, goal-oriented, worldly (in that order I suppose). Dan wasn't really any of those things. But he complemented me. I was those things (though my dad would beg to differ on the "tall" bit). I needed to be with someone who was softer, more yielding.

The story of our being together is not one that I'm necessarily proud of. Our first date bordered on awful. It was all but over when Dan decided to put him arm around me and draw me close to him. It was in that moment that I knew something was different. Something felt right. He moved in with me, unofficially, shortly thereafter. I told my then roommate that I thought he would go home at some point. He didn't. I often say that the only way I could have been with him is if he moved in. It was the only way for me to get past the things that he wasn't that I thought I needed. To be fair, he is becoming those things. Educated. Goal-oriented. Worldly. (He still isn't tall.)

Dan is an incredible father. While I might chastise him for throwing something across the room after I just told Kellen not to throw his toys, Dan is so good to Kellen. He is fun. He teaches Kellen about cars and trucks and fish, things that I am really not all that interested in learning. (For some entertainment, you can find my Mother's Guide to Trucks here.) He tries to take some of the parenting burden off me, though Kellen is definitively in a mommy-only stage. And even if Kellen won't go to Dan for long, his eyes light up when he sees Dan. "Hi Daddy," he says as he runs giggling around the living room, spinning in circles.

Our family is not yet complete. We don't know when I'll be able to be well enough to have another baby. But we will have at least one more child. For now though, it feels whole. Our family is full of love and fun and laughter. I can't imagine having wanted more.

Saturday, June 5, 2010

Love letter to my son 2

Dear Kellen-
You weren't supposed to be my first born. Maybe you wouldn't have been at all.

I found out I was pregnant May 2007. That baby would have been born January 2008.

I took fertility drugs and shots, did invasive testing to check my tubes, cried (a lot). I wanted a baby, and the nine months it took between losing the first baby and conceiving you made me question whether it was possible to ever have children, or at least conceive them naturally.

And then one morning in January, a snow day, I took out a pregnancy test expecting to see the same stark white space that had haunted me for months. We weren't even trying that month. Instead a pink line came up immediately, and although I was scared, I believed you were sticking around.

I wanted to protect you from those first early moments. I had an accident at school when I was nine weeks pregnant, and I was so afraid that I would lose you. But you were happy, oblivious.

We found out you were a boy in June. I cried. I had always imagined that I would have a girl though in my heart I was sure you were a boy. And even though you would have made a pretty girl, I am so happy to have a son.

A few hours after mourning the loss of the daughter that you weren't, I embraced the idea of a son. We threw a party for our family and friends to announce that we would be having a boy. And I threw myself into your nursery, picking out the blue and brown color scheme, lining up a muralist to paint a guitar mural on the wall.

We painted the dresser that I used as a kid, replacing the white with the brown and blue and attaching star knobs. Mom sent me a box of childhood favorites, including a Bambi blanket that I had loved on throughout elementary school. The room was ready. We were ready.

The last month of pregnancy and the first months of your life were far from anything I could have imagined. But you survived. We survived. And as much as I wish I could undo it all, that story is just as much a part of your life, your story, as it is mine.


To read more love letters, click here.

Wednesday, June 2, 2010


As many of you know, I took an extended leave of absence after maternity leave when I got Bell's Palsy and then continued to have issues with PTSD and other neurologic problems. I'm still not 100% healthy, but I am better.

I've been working on writing projects and blog projects, but both of these are fairly lonely pursuits.

So I've decided to start selling P. Chef (I had to use initial because I keep getting spam!) to get out of the house and earn some money (so that I can keep taking writing courses and get my book published about the fire; I need deadlines). I promise to be really low key, no pressure and have a good time. I have some really fun ideas. If you are interested in hosting a party, let me know. If you host a party before September 1, I will enter your name into a drawing to win something awesome (maybe a great piece of stoneware!). Or if you just want to come to the open house in a couple of weeks, send me your info, and I'll send you an eVite.

I promise not to sell you a can opener. Because we all know how I feel about those!