I know there are several folks out there praying for me, and I must say, today I’m in a much better mood. I’m still frustrated with many things going on right now, irritated, perturbed etc. – but at least I don’t have the overwhelming desire to bite someone’s head off today. Grin! Sleep really does help.
In the midst of my little crank fest during the last two days, I found an interesting article in the New York Times called Thriving After Life’s Bum Rap. It’s the sort of article that you could read in a good mood and feel all gushy about, or read it in a bad mood and want to throw things.
When I first read it I was in crank fest mode, and boy, if I’d had the energy to blog, you all would have had an eye full! I ranted in my head and went from a horrible mood to a down right you-know-what mood. Today, rereading the article, my response is somewhat more tempered.
The article is about cancer survivors who were able to turn their experiences of being super sick, of dealing with a life-threatening illness into a positive. They’ve come through their experiences with this whole new appreciation for life. They cut back on work, spend more time with family, do more of the things they love, become more involved in their communities etc.
At the height of my frustration the last few days, I must confess my first response was something along the lines of, well gee, isn’t that just hunky dory for them. It must be nice. As I said, I was cranky. I wasn’t in the mood for some sort of Polyanna approach to life being unfair.
The thing is I think that for many of us (facing life limiting illness) the article’s points are true. You become so grateful for silly little things like, for example, being able to eat a normal meal. You can’t go through this experience and be unchanged by it. You get to decide if it’s changed for the better, or for the worse.
At the same time, there’s this Lifetime family movie sort of idea about what it’s like to deal with scary illness that can in some ways be harmful too. It’s a lot to live up to when you’re struggling. We can’t all be as lucky as those that suddenly can work less, spend more time with friends and family etc. And when we fail to be able to act on this newfound wisdom of ours, it’s quite the guilt trip.
For me, one the cruel truths about my Hermansky-Pudlak Syndrome and pulmonary fibrosis is that I know how I want to spend my time here on Earth, but the realities of life don’t somehow melt away just because some doc has written a crappy diagnosis in your medical record. You’re forced to straddle the worlds of HPS, chronic illness etc. and the “normal” world and you’re expected to maneuver both in some sort of flawless ballet.
Lately, my problem is no one ever taught me the steps and I’m doing a bad job of faking it. I’m working more, not less. I see less of my friends, not more. Trying to be an HPS expert, both for my own medical care as well as for advocacy, takes a heck of a lot of time. Trying to keep research moving forward is yet another full-time job. Who are these people that suddenly get sick and have all this time to spend on their own personal happiness?
At the same time, I’m in this fix partly because of choices I’ve made – and I wouldn’t change those choices. I never would have chosen to have HPS, but since I do, I find it incredibly meaningful to be able to help work toward the cure. It’s very hard sometimes. It’s very sad sometimes. But, I treasure my HPS friends – people I would have never met had it not been for HPS – like members of my family. Life might be a lot easier if I was just juggling my own health issues and my own life issues – but it wouldn’t be as meaningful. So, I guess I shouldn’t gripe.
Usually I am, in fact, happier than I’ve been lately. I suppose part of my trouble is I actually (and this might be hard for blog readers to believe) don’t like to gripe. There is a point beyond which it really isn’t beneficial to whine. At some stage, you’ve got to move beyond venting to finding solutions. I’ve been a little stuck on the solutions lately, and I don’t like it.
In the midst of my little crank fest during the last two days, I found an interesting article in the New York Times called Thriving After Life’s Bum Rap. It’s the sort of article that you could read in a good mood and feel all gushy about, or read it in a bad mood and want to throw things.
When I first read it I was in crank fest mode, and boy, if I’d had the energy to blog, you all would have had an eye full! I ranted in my head and went from a horrible mood to a down right you-know-what mood. Today, rereading the article, my response is somewhat more tempered.
The article is about cancer survivors who were able to turn their experiences of being super sick, of dealing with a life-threatening illness into a positive. They’ve come through their experiences with this whole new appreciation for life. They cut back on work, spend more time with family, do more of the things they love, become more involved in their communities etc.
At the height of my frustration the last few days, I must confess my first response was something along the lines of, well gee, isn’t that just hunky dory for them. It must be nice. As I said, I was cranky. I wasn’t in the mood for some sort of Polyanna approach to life being unfair.
The thing is I think that for many of us (facing life limiting illness) the article’s points are true. You become so grateful for silly little things like, for example, being able to eat a normal meal. You can’t go through this experience and be unchanged by it. You get to decide if it’s changed for the better, or for the worse.
At the same time, there’s this Lifetime family movie sort of idea about what it’s like to deal with scary illness that can in some ways be harmful too. It’s a lot to live up to when you’re struggling. We can’t all be as lucky as those that suddenly can work less, spend more time with friends and family etc. And when we fail to be able to act on this newfound wisdom of ours, it’s quite the guilt trip.
For me, one the cruel truths about my Hermansky-Pudlak Syndrome and pulmonary fibrosis is that I know how I want to spend my time here on Earth, but the realities of life don’t somehow melt away just because some doc has written a crappy diagnosis in your medical record. You’re forced to straddle the worlds of HPS, chronic illness etc. and the “normal” world and you’re expected to maneuver both in some sort of flawless ballet.
Lately, my problem is no one ever taught me the steps and I’m doing a bad job of faking it. I’m working more, not less. I see less of my friends, not more. Trying to be an HPS expert, both for my own medical care as well as for advocacy, takes a heck of a lot of time. Trying to keep research moving forward is yet another full-time job. Who are these people that suddenly get sick and have all this time to spend on their own personal happiness?
At the same time, I’m in this fix partly because of choices I’ve made – and I wouldn’t change those choices. I never would have chosen to have HPS, but since I do, I find it incredibly meaningful to be able to help work toward the cure. It’s very hard sometimes. It’s very sad sometimes. But, I treasure my HPS friends – people I would have never met had it not been for HPS – like members of my family. Life might be a lot easier if I was just juggling my own health issues and my own life issues – but it wouldn’t be as meaningful. So, I guess I shouldn’t gripe.
Usually I am, in fact, happier than I’ve been lately. I suppose part of my trouble is I actually (and this might be hard for blog readers to believe) don’t like to gripe. There is a point beyond which it really isn’t beneficial to whine. At some stage, you’ve got to move beyond venting to finding solutions. I’ve been a little stuck on the solutions lately, and I don’t like it.
Comments
I am praying for you1 Hang in there. You've had a rough week. I hope you have a better weekend.