Today is Health Care Decisions Day. I know that because everywhere I’ve turned today I’ve seen some story in the media about it, and about why I need to have a written plan for who will make medical decisions should I no longer be able to make them for myself.
It’s as if the universe is dogging me with this. I’m supposed to be the “good HPS’er” who has it all together when it comes to this stuff, but to be honest, I’ve been putting this one off for a long time. Every time I get admitted at NIH they ask me if I have a health care proxy, and I have to sheepishly answer “no” and hope the nurse quickly moves onto the next question.
The thing is I haven’t wanted to deal with this issue because it means dealing with a whole lot of family garbage I’d just assume ignore. It means dealing with how my family has responded to HPS. It means talking to all the potential parties and explaining to them why I’ve made the decisions I’ve made. And it means thinking about all that scary HPS stuff I’d just assume not think about.
So, it’s been one of those issues about which I’ve been the big hypocrite. I’ll gladly stand up at conference and talk about why and how we all need to do this, yet I’ve managed to put it off myself.
But, I’m finally making progress on this topic.
It was very hard for me to decide who should make decisions for me. My parents are divorced, which always makes such things sticky. You don’t want to hurt anyone’s feelings. I’m not married so there isn’t a spouse or other obvious choice. And then there’s Ryan.
I’ve put this off so long because in my heart I knew Ryan was probably the best choice – but the thought of saddling him with such a decision someday was just more than I could emotionally tolerate. It’s bad enough that it would be a horrible decision to make for a sibling under any circumstances. But when you share a common disease, it’s just that much more traumatic. I’ve watched several HPS’ers make medical decisions for siblings dying of HPS-related complications, and it’s just been gut wrenching. As one person told me who had to make the decision to take a brother off the ventilator, “I couldn’t help but look at him and know that someday that was going to be me.”
So I’ve avoided it.
The thing is - as so often happens in HPS families - besides me, Ryan knows the most about HPS. Neither of my parents has ever called the NIH and sought out an explanation of HPS or its clinical implications etc. Neither of them has ever gone to NIH with me. Neither of them has ever attended an HPS conference and gotten a chance to get to know who’s who in the HPS world (and who might be the person to consult someday in a crisis.) Ryan would know all of those things. Ryan has a relationship with the people I’d want my family to lean on for advice, the people I trust.
So, Ryan is stuck with the job. I’ve just got to make it official.
It’s as if the universe is dogging me with this. I’m supposed to be the “good HPS’er” who has it all together when it comes to this stuff, but to be honest, I’ve been putting this one off for a long time. Every time I get admitted at NIH they ask me if I have a health care proxy, and I have to sheepishly answer “no” and hope the nurse quickly moves onto the next question.
The thing is I haven’t wanted to deal with this issue because it means dealing with a whole lot of family garbage I’d just assume ignore. It means dealing with how my family has responded to HPS. It means talking to all the potential parties and explaining to them why I’ve made the decisions I’ve made. And it means thinking about all that scary HPS stuff I’d just assume not think about.
So, it’s been one of those issues about which I’ve been the big hypocrite. I’ll gladly stand up at conference and talk about why and how we all need to do this, yet I’ve managed to put it off myself.
But, I’m finally making progress on this topic.
It was very hard for me to decide who should make decisions for me. My parents are divorced, which always makes such things sticky. You don’t want to hurt anyone’s feelings. I’m not married so there isn’t a spouse or other obvious choice. And then there’s Ryan.
I’ve put this off so long because in my heart I knew Ryan was probably the best choice – but the thought of saddling him with such a decision someday was just more than I could emotionally tolerate. It’s bad enough that it would be a horrible decision to make for a sibling under any circumstances. But when you share a common disease, it’s just that much more traumatic. I’ve watched several HPS’ers make medical decisions for siblings dying of HPS-related complications, and it’s just been gut wrenching. As one person told me who had to make the decision to take a brother off the ventilator, “I couldn’t help but look at him and know that someday that was going to be me.”
So I’ve avoided it.
The thing is - as so often happens in HPS families - besides me, Ryan knows the most about HPS. Neither of my parents has ever called the NIH and sought out an explanation of HPS or its clinical implications etc. Neither of them has ever gone to NIH with me. Neither of them has ever attended an HPS conference and gotten a chance to get to know who’s who in the HPS world (and who might be the person to consult someday in a crisis.) Ryan would know all of those things. Ryan has a relationship with the people I’d want my family to lean on for advice, the people I trust.
So, Ryan is stuck with the job. I’ve just got to make it official.
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Yesterday, I posted something that I think will interest writers everywhere. I blogged about David Wolverton/Farland (nationally renowned Sci-Fi and Fantasy author—think Star Wars books) and his free daily writing lessons and tips by email.
This man is super talented, and his totally free advice is for writers of all genres, at all stages of their careers.
Hope you don’t mind me letting you know this, but I’m so impressed with David’s generosity and willingness to help improve world writing skills, that I wanted to share with as many writers as possible.
I’ve been scribbling for over 20 years and am still learning plenty.