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Showing posts with label death. Show all posts
Showing posts with label death. Show all posts

Friday, December 7, 2012

Life ... and Death

By Michelle Joy Guerrero


How bad could death be?
Life.  Death.  I've never tried looking at these as two intertwined points in our lives. I've always thought that they are two separate dots: one being the starting point, the other being the end point.  Never did I consider thinking about that one straight line connecting the two.

When I learned that I have this disease, death became my monster.  I feared that it may be too close, or, if not, this disease might be an end point stretched well enough to make a dash – a prolonged death, a lifetime uselessness.  I feared that I may not become anything but a parasite.  I spent 3 sleepless nights thinking about how my life would unfold from then on, and then a lot more days in denial that this has no cure.

But there are things we have to accept, and the first one of them is the fact that Pulmonary Hypertension has no cure and that, second, in the natural course of things we will die from it.  It’s only after that time of acceptance that we can really move on with life.  It’s only after we stop fantasizing that we will all be cured from this that we can clear our minds and think about how we want our lives, to be rewritten by us, and not by this disease.

With this disease, we turn 180 degrees and change our lives in an instant.  It’s sometimes one of the things we believe to be negative, because we have to lose and quit a lot of things.  But death has its own beauty.  We live our lives thinking that soon, all that we have may just disappear: our careers, our independence, our active lifestyles, our adventures.  All the things we have now and all the things we want to have later, will go on the same day our hearts and lungs give up.  But once we think a little deeper than all these worries, we discover that the only thing that we worry about is life.  We think about how we would all live despite having a disease that threatens us.  We start to lose interests over things of material values, and instead start living  a life we want to look back to on our death beds.

If I’m going to die next year, do I have to cry for a year or run away from the fact that I am indeed dying?  What do I gain if I cry?  Does life become better if I run away from it?  I gain nothing, and life does not become sweeter if I run.  It only becomes worse, and my condition will only worsen.

Everyone dies.  Even the richest man dies.  Even the greatest doctor dies.  The only difference between everyone’s deaths is how much one is prepared for it.  But how do we prepare for it?  We live in the moment.  We pursue careers we want to pursue.  We spend time with people we love.  We read books we've always wanted to read.  We listen to music.  We go out and get to know our neighborhood.  We watch movies we used to have no time for.  We tell people how much we love them.  We say sorry and thank you to people that deserve them.  We laugh, and we laugh harder.  We do things that will be good for our body.  We eat proper meals with our specific diet.  We exercise to keep us fit.  We take our medicines on time.  We sleep well.  We live our lives thinking and making sure that we don’t have regrets floating in our heads when it’s finally our time to go.  We do things that make us happy, and we do all the things we could to make sure our disease does not ruin our lives.  We live ensuring ourselves that when that time comes; we peacefully say it’s time.

I used to fear death, until I came to think that it’s too shallow to look at it as the last day everyone refuses to face.  Although it had always been the end point, the only thing that really matters is how beautifully and smoothly we've drawn the line from start to finish.  And although we know that there will always be an end point in the future, we are never really sure how close it is.  So go on, draw the line beautifully until you reach the end, or, better yet, draw the line as beautiful and long as you can so that when the day comes that PH finally has a cure, you can simply draw over that point and move the final point much, much further.


Friday, October 26, 2012

Please Understand...


By Suzanne Kenner

 

Having Pulmonary Hypertension means that many things change. Just because you can't see the changes, it doesn't mean they aren't real.

Most people don't understand much about this disability/disease and its effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand...

...These are the things that I would like you to understand about me before you judge me...

I am scared. I don't know what the future holds for me. Will I end up dead or will I be one of the lucky ones. If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.

I am angry. PH has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry, please understand it's PH I am angry with, not you.

Please understand that having PH doesn't mean I'm not still a human being. I have to spend most of my day being very careful about what I do, and if you visit, I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, work and my family and friends etc, and most of the time I'd still like to hear you talk about yours too.

Please don't assume you know what is best for me. PH has affected my lungs and such, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go out with everyone else, but it hurts when you exclude me. Maybe I can't do what everyone else can.

Please don't tell me you know how I feel. You don't! Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain. Even on a good day, I feel like you do after you have run a mile. Please keep that in mind.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years.  PH is a rare disease.  Even if I was only diagnosed recently, I can't be miserable all the time.  In fact I work hard at not being miserable. So if you're talking to me, and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. There currently is NO cure for PH.