Monday, November 26, 2012

A Matter of Perception

Well, PH Awareness Month is winding down and there is one more topic I wanted to address this month.

I want to talk about death. I realize this is not a comfortable topic for people in our culture. It's not a particularly comfortable topic for me either, although I would wager my take on it is a little bit different than some might expect. But I promise not to dwell on the macabre here. So bear with me.

Let's be frank for a moment. The life expectancy with PH sucks. Completely and utterly sucks. When I was diagnosed almost five years ago they told me life expectancy was about 50% at five years. That means I had a 50/50 chance of making it to... well, this January, actually! Odds are, I'm going to beat those odds. :)

New treatments keep coming, and now they've bumped up average survival to more like seven years (According to REVEAL). Yippee. I am certain I have socks in my drawer that are older than that. So, yeah, I've had to contemplate my own mortality a bit more than your average 30-something adult.

I have ways of dealing with this that I've gleaned from other survivors. Like, telling myself I'm not a statistic. Or reminding myself there is no expiration date stamped on the bottom of my foot telling me when my shelf life is up. And these things help.

But the other way I've had to deal with this is simply to come to terms with it. I was asked recently by another patient if I thought I was going to die soon. This took me completely by surprise... until they explained that their perception was that I talked about death as if it was imminent. I had to chew on that one for a while. And I came to the conclusion that I do indeed address the topic of death pretty head on. Do I intend to be here to see my six year old son graduate from high school, move on to college, someday get married... of course I do! But I've also somehow learned to live for a bright future while acknowledging the more shadowy places that may come, and preparing for them.

It's not so different than buying life insurance, really. You prepare for the worst and hope for the best. It's just that my preparations are a bit more... pressing. I know what songs I want at my funeral, I know what I will leave my son to remember me by. I know what message I want to leave behind. I have faith that I won't need these things in the near future. But, which is worse? Knowing the legacy and message you want to leave behind, and never getting the chance, or facing it and making sure it happens?

And speaking of the worst, you know what's REALLY the worst? The way we talk about those who have passed after an illness. Think about what we always say, "Oh, she lost her battle with PH." (cancer, AIDS, etc)

Say what???

Think about it. If your neighbor crosses a busy street and meets an unfortunate end, we don't say, "He lost his battle with a speeding bus."

If your grandmother lives to be a ripe old age of 97 and passes quietly in her sleep, we don't say, "She lost her battle with aging."

No, of course not. And that sounds ridiculous, doesn't it? So why in heaven's name would we take the strongest, bravest, most dedicated fighters for life, those who have major illness, and decide that once their time has come, they have lost?

I don't believe I have lost anything. Sure, PH has taken things from me. It might even take more. But, at the end of this, I have not and will not have lost a battle. Not if I fight a good fight, keep my dignity, and keep trying like hell to make a difference. No way. I will have won. My time will simply be up.

So, please, please, if that time comes, do not say I have lost my battle (I might come back and haunt you if you do!). Instead, look to the journey as just that, a journey. And celebrate that.

It is life after all. As far as I know, nobody gets out of life alive.


  1. You're so right about the battle comment! I admit I've said it a few times, but with the way you just explained it, I don't think I'll say it again!

  2. I'm guilty too! But as I've been in this longer and longer, and watched the way people have passed on from PH, it just began to make less sense to talk about it that way. I'm out to change the word choice on this one! :)

  3. Love your post. I've always been annoyed by that 'battle' phrase myself. It's as if people can't accept that death and illness just happen; they have to create an evil 'enemy', ie, 'cancer' or 'PH' and the patient, has to 'battle' it, just like in some ridiculous action movie. It seems that dying of a terminal illness would be better thought of as a gradual journey of acceptance and detachment from the physical body. I'm officially 'end-stage' PH and have confronted death (frightening as all hell) and continue to talk about it with counselors and other people I know who have worked with dying people, but mostly I try to enjoy what I can out of each day and not focus too much on the future. PH is one of those nebulous diseases - everyone's case is different and no-one can really predict anyone's lifespan. As I've actually improved health-wise since my PH docs announced my imminent doom and I switched to Palliative Care, now I really don't know. Anyway, sorry for my long ramble. Thanks for your post.

  4. Wow, Leela... thank you for sharing (and I am so glad you found us in Generation Hope!). It's amazing how the journey is never what was predicted. I know my own is a far cry from what I originally anticipated. I'm so glad you are talking to people and shared your story here. Your advice is really wise... enjoy each day. I am glad you have seen some improvement too!

  5. Hi Colleen,
    Thank you for putting words to that. My daughter has PH, she is 6. I have thought about this alot and I hated to think of some as winners and others as losers. Its terrible. I never want to hear that anyone has lost their battle with anything. It makes me feel like they werent strong enough, when its said they are going to fight this battle and win....really? what if they dont "win"? Anyway you understand. :-) But thanks. It may be morbid a bit but I did have a little LOL when you said he lost his battle with the speeding bus. It totally shows though how silly it is to say they lost their battle. I love it.

  6. Thank you, Kassie! I think it's okay to laugh... the absurdity of it was exactly the point. :) I sincerely hope your daughter is doing well. Take care.

  7. Wonderful words and great lgic at the end. This is a fantastic blog!