As some of you know, I’ve been paying attention to the featured themes on the JPG Web site as sort of “homework” assignments to try to improve my photography skills. I haven’t entered another picture (besides the one of Donna) because I’m playing a little strategy. Mind you, I never expect to win one of these contests. I just want to maximize the exposure for Hermansky-Pudlak Syndrome in some small way. The photo of Donna has had 122 people read the caption, and received eight votes. Grin!
I decided not to enter a photograph until the category comes up for voting – otherwise I fear it will be buried so far back that no one will ever see it. It would be nice if they rotated somehow. Oh well.
But, I think about the themes a lot. I go through my pictures trying to decide which ones are good, and which ones would fit with one of the listed themes. If I don’t have one that fits, then I think of where I might go to capture the right shot – or how I might compose something visual that would tell a story matching the theme.
Right now one of the themes that has the fewest number of entries (thereby upping the odds of actually being seen) is the theme on loneliness.
HA! I thought to myself. A subject I know something about. Surely I can come up with a picture to portray loneliness.
There have been long periods in my life where I’ve felt very lonely. I’m an expert.
As a kid my family moved roughly every three years. We were a military family and that’s just the way the Air Force worked. For me, that meant a new school every three years. A new vision teacher, new friends, new teachers, new houses, new neighborhoods – constantly starting over. I actually think I thrived on this a bit. But, with every move in the beginning would come long periods of loneliness.
Moving all the time and making new friends would leave any kid lonely for a while. But I had the added aspect of being constantly teased about my vision and my albinism. I can remember numerous instances where teachers were even fully aware of the harassment, and never did anything about it until I’d become so upset and hysterical that I’d fall apart at home, and my mother would intervene on my behalf. Talk about feeling lonely – when your teachers don’t even stand up for you.
The up side of this is that I learned some skills that have been helpful both as an adult and as a journalist. I can make friends quickly. I can somehow get to know people fairly well fairly fast. I can be a social chameleon to fit in easily and put those around me at ease.
Once I had a friend tell me that perhaps one of the reasons I find it so hard to find a church group I fit into well is because I expect friendships too quickly.
He was probably right, although the notion still irks me. A church is one place, if there’s any place, where it should not take months and years to become known, accepted, loved, respected and included. But, that’s probably a whole different blog topic.
Loneliness, loneliness – the theme has rattled around in my head all week.
These days I spend more time alone than I have at any other time in my life. But, oddly enough, I don’t feel lonely. Then it hit me – actually, these days the places I feel loneliest now are groups.
Isn’t that weird?
Is that healthy?
Hermansky-Pudlak Syndrome has changed my life so much these past four years. Now I live in this duel world of hope and optimism about the future, fueled by our accomplishments as patient advocates – and that constant voice somewhere in the back of my head that gently sneaks in and reminds me that all the success might be too late for me.
I do have pulmonary fibrosis now. It isn’t something I might develop, or something I might expect in another decade – it’s here, even if only in a small way right now. What if I’m on placebo and not Pirfenidone? What if it takes us another year to fill this trial, and then another three years after that before we can push for FDA approval? What if my lungs start to falter before that? We aren’t moving fast enough. I can’t pull back from this and slow down.
Some people cope by constantly picking the most positive things possible. But I cope best by making a kind of peace with the worst case scenario, and working upwards. My personality can’t put this on some sort of internal shelf in my brain to gather dust.
When I was diagnosed with HPS I was part of a 20-something church group. We were doing a study on careers and finding your calling in life. People were always finding new jobs, getting promotions, going back to school, or buying their first homes. Suddenly I had all this health “stuff” on my plate. I shared what was going on in my life, because that’s what you’re supposed to do in such groups.
But, they were completely unprepared for such a scenario. As the study progressed, I felt more and more like an alien observer to a different world. Career seemed so far away to me compared to the things I was thinking about. Eventually I quit expressing my needs when time came for prayer requests because I felt like I was alienating myself further and further from the group. Prayer requests would go something like this:
Please pray for me. I’ve got a test next week.
Please pray for me. I’m driving to my mom’s house in Wichita.
Please pray for us. We’re looking at houses next week.
Please pray for me. My boss is making me nuts.
Then it would get to me. Please pray for us. We need our drug trial to start and it’s hung up in a bureaucratic mess.
Or, please pray for the family of my HPS friend that passed away this week.
Or, please pray for my HPS friend that needs to get on a lung transplant list.
I mean, it gets old for outsiders. It gets old for insiders. So, to be tolerable to the rest of the world, you just quit vocalizing these needs. Everyone’s traumas in life are relative, and you don’t want to constantly overshadow everyone else’s concerns and worries.
Now, in groups, sometimes I feel like I’m an actor in some kind of imaginary play. People talk about their dating lives, their vacations, they have babies, they talk about their kids etc.
I have nothing to add. Well, I do, but no one really wants to hear it.
No one wants to hear about the HPS world. You’ve got to ration out that sort of thing. No one from the outside appreciates developments like the insiders do. Working on HPS things is isolating because you do it largely alone – or with other HPS’ers online or on the phone. Friends don’t really understand how much time it takes or what you’re really trying to do. You can’t blame them.
Most people go to a doctor when they’re sick. The doctor knows what’s wrong with them and usually fixes it. If it’s horrible, there’s some place to go for information and support in the community. There’s some “professional” working to fix it.
But with an ultra rare disease you build everything from the ground up. You build the support group. You “build” the researchers by seeking them out and inspiring them. You have to put together the patient community for the clinical trials, and sometimes even push to create the trial its self. Doing all of those things takes a lot of time, and that’s time away from all the things everyone else does that people talk about in casual conversations.
But when I’m alone, or online or on the phone with my HPS friends, I don’t feel alone the way I can in a whole group of people right here in my own town. I’m doing what I need to be doing and I’m not forced to answer to anyone about it. I don’t feel like I’m failing at life because I’m not doing all the things I’m supposed to be doing as a 30-something. And, it might seem odd – but in that space I feel most positive about the future because I’m defining life and success in the ways that are most meaningful to me.
I decided not to enter a photograph until the category comes up for voting – otherwise I fear it will be buried so far back that no one will ever see it. It would be nice if they rotated somehow. Oh well.
But, I think about the themes a lot. I go through my pictures trying to decide which ones are good, and which ones would fit with one of the listed themes. If I don’t have one that fits, then I think of where I might go to capture the right shot – or how I might compose something visual that would tell a story matching the theme.
Right now one of the themes that has the fewest number of entries (thereby upping the odds of actually being seen) is the theme on loneliness.
HA! I thought to myself. A subject I know something about. Surely I can come up with a picture to portray loneliness.
There have been long periods in my life where I’ve felt very lonely. I’m an expert.
As a kid my family moved roughly every three years. We were a military family and that’s just the way the Air Force worked. For me, that meant a new school every three years. A new vision teacher, new friends, new teachers, new houses, new neighborhoods – constantly starting over. I actually think I thrived on this a bit. But, with every move in the beginning would come long periods of loneliness.
Moving all the time and making new friends would leave any kid lonely for a while. But I had the added aspect of being constantly teased about my vision and my albinism. I can remember numerous instances where teachers were even fully aware of the harassment, and never did anything about it until I’d become so upset and hysterical that I’d fall apart at home, and my mother would intervene on my behalf. Talk about feeling lonely – when your teachers don’t even stand up for you.
The up side of this is that I learned some skills that have been helpful both as an adult and as a journalist. I can make friends quickly. I can somehow get to know people fairly well fairly fast. I can be a social chameleon to fit in easily and put those around me at ease.
Once I had a friend tell me that perhaps one of the reasons I find it so hard to find a church group I fit into well is because I expect friendships too quickly.
He was probably right, although the notion still irks me. A church is one place, if there’s any place, where it should not take months and years to become known, accepted, loved, respected and included. But, that’s probably a whole different blog topic.
Loneliness, loneliness – the theme has rattled around in my head all week.
These days I spend more time alone than I have at any other time in my life. But, oddly enough, I don’t feel lonely. Then it hit me – actually, these days the places I feel loneliest now are groups.
Isn’t that weird?
Is that healthy?
Hermansky-Pudlak Syndrome has changed my life so much these past four years. Now I live in this duel world of hope and optimism about the future, fueled by our accomplishments as patient advocates – and that constant voice somewhere in the back of my head that gently sneaks in and reminds me that all the success might be too late for me.
I do have pulmonary fibrosis now. It isn’t something I might develop, or something I might expect in another decade – it’s here, even if only in a small way right now. What if I’m on placebo and not Pirfenidone? What if it takes us another year to fill this trial, and then another three years after that before we can push for FDA approval? What if my lungs start to falter before that? We aren’t moving fast enough. I can’t pull back from this and slow down.
Some people cope by constantly picking the most positive things possible. But I cope best by making a kind of peace with the worst case scenario, and working upwards. My personality can’t put this on some sort of internal shelf in my brain to gather dust.
When I was diagnosed with HPS I was part of a 20-something church group. We were doing a study on careers and finding your calling in life. People were always finding new jobs, getting promotions, going back to school, or buying their first homes. Suddenly I had all this health “stuff” on my plate. I shared what was going on in my life, because that’s what you’re supposed to do in such groups.
But, they were completely unprepared for such a scenario. As the study progressed, I felt more and more like an alien observer to a different world. Career seemed so far away to me compared to the things I was thinking about. Eventually I quit expressing my needs when time came for prayer requests because I felt like I was alienating myself further and further from the group. Prayer requests would go something like this:
Please pray for me. I’ve got a test next week.
Please pray for me. I’m driving to my mom’s house in Wichita.
Please pray for us. We’re looking at houses next week.
Please pray for me. My boss is making me nuts.
Then it would get to me. Please pray for us. We need our drug trial to start and it’s hung up in a bureaucratic mess.
Or, please pray for the family of my HPS friend that passed away this week.
Or, please pray for my HPS friend that needs to get on a lung transplant list.
I mean, it gets old for outsiders. It gets old for insiders. So, to be tolerable to the rest of the world, you just quit vocalizing these needs. Everyone’s traumas in life are relative, and you don’t want to constantly overshadow everyone else’s concerns and worries.
Now, in groups, sometimes I feel like I’m an actor in some kind of imaginary play. People talk about their dating lives, their vacations, they have babies, they talk about their kids etc.
I have nothing to add. Well, I do, but no one really wants to hear it.
No one wants to hear about the HPS world. You’ve got to ration out that sort of thing. No one from the outside appreciates developments like the insiders do. Working on HPS things is isolating because you do it largely alone – or with other HPS’ers online or on the phone. Friends don’t really understand how much time it takes or what you’re really trying to do. You can’t blame them.
Most people go to a doctor when they’re sick. The doctor knows what’s wrong with them and usually fixes it. If it’s horrible, there’s some place to go for information and support in the community. There’s some “professional” working to fix it.
But with an ultra rare disease you build everything from the ground up. You build the support group. You “build” the researchers by seeking them out and inspiring them. You have to put together the patient community for the clinical trials, and sometimes even push to create the trial its self. Doing all of those things takes a lot of time, and that’s time away from all the things everyone else does that people talk about in casual conversations.
But when I’m alone, or online or on the phone with my HPS friends, I don’t feel alone the way I can in a whole group of people right here in my own town. I’m doing what I need to be doing and I’m not forced to answer to anyone about it. I don’t feel like I’m failing at life because I’m not doing all the things I’m supposed to be doing as a 30-something. And, it might seem odd – but in that space I feel most positive about the future because I’m defining life and success in the ways that are most meaningful to me.
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