On days like this I’m reminded of the old U2 song “Some Days Are Better Than Others”.
Everyone has bad days. Days you feel you should just go back to bed because karma’s just not on your side. I’ve had days like that in spades. One day last year I swear that Loch single handedly destroyed my house in the first hour he was awake. He tripped and threw juice all over the room. He wildly danced/kicked the tinker toy sculpture I’d made – to encourage him to play with something other than cars – shattering most of the pieces. He’d pulled the towel rack off the wall and dropped his strawberries all over the carpet I’d just finished cleaning, all with Caillou’s exceptionally irritating voice whining in the background. I was beside myself. You look around as if to say “Is anyone seeing this but me?” realizing that this isn’t an episode of punked, but your life, and it’s on you to just suck it up and clean the carpet again. Another day I woke up to find my car broken into and my XM radio stolen. Less than a half an hour later the CD player in my car – which I’m now using- breaks and eats my CD, and when I try to get the CD out – to stop the hideous crunching noises – I rip my pants. Those days are annoying. Those days make you groan. But today’s different.* Today’s a sick day. And the problem is, when I don’t feel well I get discouraged, and then my symptoms are exacerbated by my melancholy. I don’t want to interact with people. I don’t want to snap out of it or be positive, I just want to watch TV.
When I was first diagnosed I watched a lot of TV. I didn’t want to think. I didn’t want to deal. I wanted to pretend it wasn’t happening. I’m still like that a bit. I don’t do support groups. I don’t often try to reach out and connect with others who have my disease. Sometimes, when I do talk to people who are sick, I see a kindred spirit and I know I’m not alone. But, for the most part, I want nothing to do with sickness – my own or others. I want to be around healthy people. It helps me pretend I’m healthy. And for the most part, I find that works for me. There are also some times that my being sick can be helpful to others, and for that I feel grateful. My dear friend Shannon was diagnosed with Breast Cancer last year. She fought with grace and beauty and took all it threw at her – from chemo, to the port in her chest, to the loss of her hair and toenails – with her head high and her two little boys smiling the whole time. She was magnificent. So much so that Sunnybrooke Hospital in Toronto asked her to be the “face” of the disease. She was everything you’d hope to be in that situation. Strong, confident, positive and, even bald, gorgeous. That being said, it was also incredibly hard on her, and we spoke a lot as I was one of the only people that could truly understand staring your own death in the face and saying, “No. Not today. Not me.”
One thing we really bonded over was that we weren’t brave. People always tell you how brave you are but really, what’s the alternative? Lying down on the floor and giving up? It’s not brave. It’s just living. Putting one foot in front of the other and continuing to live.** It’s scary and infuriating. It makes you so mad at the unfairness of it all. Why you? Why this? Shannon, like myself, had lead a pretty squeaky clean life. We liked our cocktails, but other than that we were super healthy, non-smoking, gym-going, drug-free ladies in our early 30’s. How were we the one’s getting sick? When I was first diagnosed they asked me a bunch of questions. Did I smoke? No. Did I use diet drugs? Never. Did I do cocaine? I’m one of the only people I know that never tried it. Of that last one I’m very glad. If I had, I’d always be wondering if I gave this disease to myself. If I was to blame. But I’m not. No more than Shannon was to blame for her Cancer.
I was glad I could be a sounding board for my friend who was battling similar demons. Someone she could talk to when she was feeling like “What the *&%$?”. And in some ways, I envied her. I envied that she had a course of action to follow to potentially rid her body of her sickness. She fought that disease with all she had and she’s come out the other side cancer free. Thank God. I know it could come back, but for now, she’s just Shannon again. Probably even a better version. A wiser, more aware soul. I wouldn’t wish that kind of clarity on anyone, but I know it’s the one good thing about getting sick. Your perspective shifts and you can never go back.
There is no other side to come out of with PH yet, and on days like this, I feel so sad. I just finally admitted to myself that I should be using oxygen therapy at night. To be honest, I should probably be using it all the time, but I can’t get my head around having those tubes on my face on a daily basis. I know people do it every day, and I’m sure they hate it too, but I’m not ready. I want to stay looking well, even if I’m not necessarily feeling that way, for as long as I can. I should have probably started oxygen therapy over a year ago. I sleep poorly. I often wake up with headaches. I’m exhausted. It’s like I’m hung over all the time, and I’ve finally admitted I could be doing serious damage to my organs forcing them to function this way. I know it’s vain. I know it’s shallow. But I also know myself, and I can foresee how this kind of change will affect my personality and self perception, and it’s not good. I don’t want people to see a sick person when they see me. I don’t want to have to see a sick person myself when I look in the mirror.
So much of my positive attitude stems from not appearing to be ill. From keeping me “me” at least in pretense. I know looks aren’t everything but, like it or not, the world is kinder to attractive people and I’m not yet willing to give that up. I’m still young. I’m still active. I know myself enough that, should I have to wear a tube on my face all day, it’ll change the way I interact with the world. It will change who I am. The people in the ads for these portable oxygen tanks are all in their 70’s. I’m in my 30’s. I’m outgoing and funny and positive and I can’t guarantee that those things won’t disappear under a blanket of shame if the first thing people see when they look at me is sickness. I don’t want Loch to be embarrassed of me in front of his friends. Parents are embarrassing enough. I want to be cool for him. I want him to be proud of me. I don’t want to walk the red carpet with my handsome husband and a tube on my face. I don’t want people to pretend I’m not there because it’s easier than dealing with what’s going on. Look, I’m not going to lie. I’ve had a lovely life as a pretty girl. And I know that pretty girls discover one day that they are no longer the beauties they once were and it’s an adjustment. I met a sweet older lady in the post office once who complimented me on my hair. She told me she used to have beautiful hair and when she was young she was quite the knockout. She told me that getting old is tough. That when people are rude or dismissive of her, she often thinks, “You wouldn’t have talked to me like that when I was young and beautiful”, and she’s right. People who complain about men making cat calls should consider what’s worse, the cat calls or the day they stop. That’s age. That’s life. With any luck you hope to take care of yourself and your body enough to grow into an attractive older person. People might not look at you the same way, or be as nice as they once were, but you can still be considered viable. Interesting. Sexy. Adding a tube to my face completely removes that possibility right now, and I’m just not ready for that.
A really nice girl wrote me to tell me her sister had died of PH 9 years ago, and though she had “no helpful advice per say”, she just wanted to let me know that her sister had also decided not to give up. To fight. To not let it take her. She wrote me to say it sounded like I had a similar attitude. It was such a nice letter, but the thing that stuck with me was that her sister had died. I hate hearing that. It’s so discouraging. I realize my disease is progressive. That you can be going along just fine, then you take a downturn, and it can be all over. It’s hard to see this oxygen therapy thing as anything other than a downturn. My lovely doctor told me that it’s no different than last year. That I could, and probably should, have started it then, so this is a positive step. It just doesn’t feel like one to me. My mind, sadly, tends to gravitate towards the negative. I wish it wasn’t so, but it is. Sean recently forbid me to read the PHA Newsletter. He told me he’d read it for me and give me any pertinent information, but I wasn’t to read it myself.
The problem was, every time I read it I found some article about a young woman like me had just died. Last year the daughter of the President of the entire PH Association died. She was 21. I thought, if the President’s daughter can’t make it, where does that leave me? The most recent issue had a little article written by a girl my age with PH. It was a testament to her husband, her primary caregiver. She talked about how much she appreciated him, and how he’d stepped up to really help with their brand new baby and how she couldn’t do it without him. I totally connected with her. I feel that way about Sean. A lot falls on him and he takes such excellent care of me. Especially since my parents live in Toronto, and his in Oregon, we really only have each other to lean on and it can be tough. It’s a lot of pressure to live with a baby and a sickness, and I felt this woman was writing about the same sort of life. I understood and appreciated her. Then, when I got to the end of the article, it said, “As we went to print, [this woman, this mom with nice husband and new baby] lost her battle with PH.” WTF????!!!!!! The woman I’ve just connected to is dead? How am I supposed to be positive when I read stuff like that?
Throw that together with a day where my breathing is off, or I find out I have to wear oxygen, or I have to ask a grocery store clerk to lift Loch out of the shopping cart because I just can’t do it, and I’m a wreck.
Look, I don’t want, or plan, to die from this disease, but the reality is I can, and sometimes that’s all I can see. Some days are better than others. I just wish my problems were about juice on my carpet and broken CD players. In hindsight, those would be good days.
* I wrote this last week. Today, as you would have it, I feel fine. That’s the thing about this disease, ups and downs.
**As a side note: Another thing other sick people and I strongly agree on, is when you find out that someone you know is sick, not flu sick but might die sick, DON’T SEND FLOWERS. It’s such a nice thing to do, but when I was first diagnosed, my house had so many flowers in it, it was like I was at my own funeral. I hated it. Plus, flowers are pretty and then they die. It’s just not something you want to be reminded of if you’re dealing with your own mortality. Send a magazine subscription or nice lip gloss or a massage gift certificate. Send something fun that might perk them up. Leave flowers for hostess gifts, love, and the birth of babies.