Yesterday just wasn’t a good day in the journey to find a cure for HPS. The FDA’s announcement about Pirfenidone shook us hard. Every step of the way when there has been bad news, there was at least something hopeful around the corner to balance it out. This time that hope, honestly, is just a long way off. The FDA is asking for another trial, and we all know how long clinical trials take. It won’t even be a trial for us, thus it will be years before we can even begin to get access (if it’s ever approved) on some sort of off-label basis.
Treatments are moving at the speed of science, but disease keeps a different pace. We’re stuck between the two and some days it feels like such a powerless place to be.
I’ve had a hard time concentrating these past two days. The thoughts filling up my brain are far from nice, politically correct and sometimes are just plain irrational.
I know I’d feel better with a good cry, but the tears won’t come – just anger.
I’ve been keeping a low profile because I feel blue and angry at everything, and it certainly isn’t fair to those who don’t live within my own little universe. Sometimes I thank God that I’m single, and today is one of those days. That poor husband wouldn’t be able to do anything right on a day like today. I’d probably be picking a fight just to be able to yell at someone.
Normally I have a better attitude about things. My life hasn’t turned out at all like I planned. I will probably be as poor as a church mouse for as long as I live. Yet, I take some comfort in a strange sense that God has prepared me for what I’m doing my entire life – as if everything I did before now was training me for this. I might not leave behind a cent, but I know I make a difference in the world, and somehow that’s enough most of the time.
Today, maybe not. Today I’m angry.
I woke up to hear an interview with a former New York Times and Newsweek columnist – someone I’ve read for years and who took a career path I had wanted to take. She spoke about her kids and all the great stuff she’s been able to do in her career. Any other morning I would have found it interesting. This morning it felt like a slap in the face – a glimpse of the life I didn’t even get to make a stab at thanks to health issues. That was supposed to be me. Doesn’t anyone get it – that was supposed to be me.
I’m content working on HPS stuff, but make no mistake. It wasn’t my plan. HPS chose me, I didn’t choose it. I had intended to do other things in my life. The problem is my coping style forces me to do something. I can’t just turn off the clock that I know is counting down within me.
Today I felt angry at things said years ago that didn’t even make me angry at the time. I remembered a conversation with a doctor who was trying to assure me about my pulmonary fibrosis. He explained how very mild it is, and that if it continued to develop at its current rate, I’d be in my 70s before it was even much of a problem.
The trouble is there aren’t a plethora of 70ish HPS type 1 folks. Obviously, something changes. It doesn’t continue at the same rate, and I know it. I didn’t fall off the turnip truck yesterday. At the time this conversation seemed kind. Today, for some reason, the memory of it seemed cruel.
Various friends and relatives called, and when I shared the news with them, the conversation went something like this, “Oh, that’s terrible news. I’m so sorry. Hey, did you get that e-mail I sent about such and such?....” Intellectually, I know they just don’t know what to say, or they truly just don’t understand. Emotionally, I’m sick of being the one that understands. I don’t know what I wanted them to say, but it felt like I’d just been kicked in the gut repeatedly, and everyone was walking by taking hardly any notice.
I felt angry at the 20-somethings at Homers without a care in the world, and at the mom’s group in the corner complaining about the problems of raising children – something I’ll never get to do.
I felt angry every time my computer slowed down, even for a second. Let’s face it. I’ve just been ultra-crabby!
But I’ve got to start to dig out of the hole. Sometimes I feel like it’s my job to the HPS cheerleader. I’m supposed to help everyone else climb out of the hole and keep everyone focused on what we need to do.
I decided to share this, however, because I think it’s important to just say it sometimes. Pulmonary fibrosis sucks. It isn’t fair and I’m pissed. I’m tired of losing friends. Days like this are just part of the journey and to say otherwise is just throwing more salt in the wound if you ask me.
There is a time, however, where we need to take that depression, that anger, that frustration and once more begin to channel it to use it.
Frankly, given the state of the research right now there are two things we can do to improve our future. We can find more HPS’ers and we can raise money. Those are the two biggest things we can do.
Without continued outreach, we won’t be able to respond the next time an opportunity comes our way. Besides – HPS is like being pregnant. Either you have it or you don’t – and if you do, we never want to leave you behind when we make a breakthrough.
Money is important because, honestly, without a massive growth in our budget, we’ll never have much of a seat at the research table. Research costs money. We’re limited by what we can fund.
So, if you’re feeling like I am about the news – take a few days to be mad as hell, and then ask yourself, what are you going to do about it?