It seems as though I should start this blog with some sort of beginning, but what’s the beginning? In college I had a column in the newspaper. It was the most fun I’ve ever had writing anything. I simply wrote about whatever was bugging me that week – and there was never a shortage of material. My picture ran with the column, and being a kind of Amazon blonde woman with a long white cane – I tended to be memorable. People would sit next to me on the bus, or in the student union, and talk to me as if they knew me. Having difficulty recognizing people I don’t know very, very well, I’d play along for fear it was someone who would be offended that I didn’t recognize them. Often it was well into the conversation before I realized I was off the hook – I didn’t know them at all. They just happened to read my column.
The greatest compliment I ever had as a writer was one night when I overheard two drunk girls arguing about a column I’d written about Hillary Clinton at a bar at 1:00 a.m. I consider it the greatest compliment because not only had they read the column, (to this day for some strange reason it surprises me when readers contact me saying, ‘I read such and such….’) but they’d remembered it long enough to recall it while drunk in a bar at 1:00 a.m.
So, that’s the approach I plan to take here – to write about what ever is bugging me at the time – sometimes Hermansky-Pudlak Syndrome (HPS) related, and sometimes not.
Right now, however, it’s HPS related.
One of my HPS friends called me a few days ago upset because someone from her church had advised her to quit talking about her HPS because it scared people. This supposed friend had all kinds of other advice to offer – which could provide blog topics for months – but I’ll start with that one.
I took it personally because I know there are probably people around me who think the same thing, but so far have been too polite to say so. While I can appreciate that often people may not know what to say, if I’m honest, I have little sympathy for them.
I’m fighting for my life. I’m fighting for my brother’s life. I’m fighting for the lives of my many friends who have HPS. If I have to shout my story from the rooftops, I’ll do it. I need help, and how am I going to find it if I don’t shout as loud as I can whenever I have a chance? If that means that a few people are lost for words for a few minutes, if it means they feel awkward – it seems a small price to pay. I would hope that if they’re truly my friends, those moments of awkwardness would seem a small price to pay to support me along the way. But, if it’s too much to handle, then get out of the way. I need a cure, and I don’t have time for the politeness that would dictate I not trouble anyone with my problems.
There are other reasons for being public about HPS. Although I’m still quite healthy, HPS does affect my life in thousands of little ways every day. Sometimes it’s missing listening to a band at the local coffee house because I’m busy working on an HPS fundraiser. Sometimes it’s dashing out of work with no explanation (except to my boss) because my ostomy has sprung a leak. Sometimes it’s missing church because after a day’s work I’m just too exhausted to stay awake. Sometimes it’s missing a holiday with family because I’ve used up all my leave time to go to the National Institutes of Health and participate in research. What would people think if they didn’t understand what’s behind some of the things I do? They’d probably think I was a lazy, unreliable, spacey blonde!
Of course, no matter how public I may be, I’m very aware that there are some people who will never get it. They’re not capable of stepping outside their own experience long enough to look beyond the surface of things. You just can’t please everyone.
The greatest compliment I ever had as a writer was one night when I overheard two drunk girls arguing about a column I’d written about Hillary Clinton at a bar at 1:00 a.m. I consider it the greatest compliment because not only had they read the column, (to this day for some strange reason it surprises me when readers contact me saying, ‘I read such and such….’) but they’d remembered it long enough to recall it while drunk in a bar at 1:00 a.m.
So, that’s the approach I plan to take here – to write about what ever is bugging me at the time – sometimes Hermansky-Pudlak Syndrome (HPS) related, and sometimes not.
Right now, however, it’s HPS related.
One of my HPS friends called me a few days ago upset because someone from her church had advised her to quit talking about her HPS because it scared people. This supposed friend had all kinds of other advice to offer – which could provide blog topics for months – but I’ll start with that one.
I took it personally because I know there are probably people around me who think the same thing, but so far have been too polite to say so. While I can appreciate that often people may not know what to say, if I’m honest, I have little sympathy for them.
I’m fighting for my life. I’m fighting for my brother’s life. I’m fighting for the lives of my many friends who have HPS. If I have to shout my story from the rooftops, I’ll do it. I need help, and how am I going to find it if I don’t shout as loud as I can whenever I have a chance? If that means that a few people are lost for words for a few minutes, if it means they feel awkward – it seems a small price to pay. I would hope that if they’re truly my friends, those moments of awkwardness would seem a small price to pay to support me along the way. But, if it’s too much to handle, then get out of the way. I need a cure, and I don’t have time for the politeness that would dictate I not trouble anyone with my problems.
There are other reasons for being public about HPS. Although I’m still quite healthy, HPS does affect my life in thousands of little ways every day. Sometimes it’s missing listening to a band at the local coffee house because I’m busy working on an HPS fundraiser. Sometimes it’s dashing out of work with no explanation (except to my boss) because my ostomy has sprung a leak. Sometimes it’s missing church because after a day’s work I’m just too exhausted to stay awake. Sometimes it’s missing a holiday with family because I’ve used up all my leave time to go to the National Institutes of Health and participate in research. What would people think if they didn’t understand what’s behind some of the things I do? They’d probably think I was a lazy, unreliable, spacey blonde!
Of course, no matter how public I may be, I’m very aware that there are some people who will never get it. They’re not capable of stepping outside their own experience long enough to look beyond the surface of things. You just can’t please everyone.
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