A few days ago I touched on the topic of my lack of concern about retirement. That entry touched off several e-mails, and thus I want to clarify a few things. I don’t want you all to think I don’t ever think of the future. Rest assured, while I might not be completely convinced that I will ever experience “retirement” I still do contribute to my 401K regularly! It’s not as if I’m somehow resigned to any particular scenario of the future.
I want to clarify why it is that a lack of acceptance or recognition of HPS on the part of some close to me is so incredibly frustrating.
I’ve gotten to a point where I can accept that this is something not everyone can cope with – or that their method of coping is to pretend nothing is wrong. I might not like it. It might not be my style – but in the last five years I’ve had no choice but to accept that there are people around me who will react this way. I have no power over that. If I haven’t been able to change it in five years, I probably never will.
It is a disappointment. It would be nice to have those closest to you be capable of serving as a sounding board, a place to share the concerns and anxieties that come with both having HPS and trying to advocate for the cure. But, at a certain point you’ve got to let go of the “should” in life. Maybe it should be that way, but it isn’t. Move on.
The part that gets on my nerves, that makes me feel the most frustrated and angry, is that I am expected to adopt the same coping technique. In order to accommodate those that wish to deny what’s going on, I have to “play the part.” Frankly, that simply isn’t possible.
I’m blessed. I’m pretty healthy right now. In fact, these past few weeks I’ve been feeling especially great. But, when HPS came into my life it changed things. It changed the way I look at life. It changed the way I look at my career. We all make choices in our lives, and HPS changed the choices available to me.
We all have things that are expected of us. Our parents, our friends etc. all have expectations of us. Indeed we have various expectations of ourselves.
When I was in high school, I was voted most likely to succeed and graduated second in my class. I graduated from college with highest honors. I have always worked hard, gone the extra mile, overcome any obstacle to achieve my dreams. I don’t say these things to brag, but instead to make the point that when I entered adulthood there were certain expectations of me.
Everyone thought that by the time I was 30, I’d be “moving” in my career. It was certainly reasonable to assume at this stage in my life I’d maybe be married, or at least looking at purchasing a home etc. At this point in my life I should have moved on from milk carton crate book shelves and dorm room furniture.
When HPS crashed onto the scene, that was indeed the direction things were heading. I was soon to be moving, starting a new career path, getting married etc. Granted, it might not be the typical experience, but soon after putting together the HPS puzzle, I had to make tough choices. One of them was to stay in the United States and play an active role in the HPS Network instead of moving overseas.
Lots of tough choices have come since then.
I’ve been leery to risk the job hoping that commonly comes with developing a career in journalism because of issues surrounding health insurance. While I might not make much money where I am now, I do have a certain level of negotiating power and leeway because I’ve covered the same industry for so long. This has come in very handy. I don’t think I could have survived the many doctor appointments this winter, the few weeks when my brain was mush from the allergy medications, or the time away to go to NIH if I were a newbie on another magazine staff somewhere. I had to make a trade off.
I’ve made other trade offs as well. While I still freelance, I take on far fewer assignments than I once did. Instead, I choose to spend the time working on HPS-related things. This has meant making less money.
Last year I was asked to serve on a committee to advise on continuing education classes for those in the industry I cover, but in the end I turned it down. It was a bad career move – but it was a good move for me. It would have meant lots of hours of unpaid time that would have added stress to my life and taken away from the things that really matter to me, like the HPS Network.
I should be seeking out opportunities to hussle – to serve on committees and boards for our professional association etc. I should be spending my lunch hours trading shopping stories and coupons with the other editors, or Saturdays at the corporate softball game (even though I can’t play) because these would be politically astute things to do.
Instead, I spend my lunch break every day working on HPS-related things. Frankly, I want to do more for the HPS Network, not less. Who is really going to care a year from now what writing workshop I helped plan? And if the schooze paid off and I made more money etc. – I know only too well how quickly it could all fall apart.
But if a family member refuses to look at the reality of HPS, the choices I’ve made look rather foolish. If they equate working for the HPS Network to something akin to volunteering at the animal shelter (not that this isn’t important volunteer work!), or joining some club, then making sacrifices for this cause seems rather silly.
If you refuse to recognize, for example, the amount of money I’ve spent so far this year on medications, doctor co-pays and cabs to the doctor, then it’s pretty easy to be critical of my finances and wonder what I’m doing with my money.
It’s then pretty easy to stand back from a comfortable distance and wax on about all the things I should be doing. It’s easy to, in subtle ways, question why I live the way I do, why I don’t make more money, or why I never seem to have any time off of work.
Even now, without too many health complications, my life no longer fits the mold those around me expected.
If they fail to even recognize HPS and what it entails, then how can they appreciate my life? My life, minus HPS, would fall pretty short in a lot of “worldly” ways.
But I don’t feel I’ve “fallen short.” I feel I’ve made investments with my time, and that they’ve paid off ten fold. I only wish I could do more. I’m very proud of a lot that we’ve achieved in HPSland together.
When I’m getting that vibe in familial conversations – the one where I feel like I’ve been a disappointment – I want to scream, but look at what we’ve done so far! Look at this. But to those who can’t handle HPS, it’s invisible. It’s like only looking at half of me.
I want to clarify why it is that a lack of acceptance or recognition of HPS on the part of some close to me is so incredibly frustrating.
I’ve gotten to a point where I can accept that this is something not everyone can cope with – or that their method of coping is to pretend nothing is wrong. I might not like it. It might not be my style – but in the last five years I’ve had no choice but to accept that there are people around me who will react this way. I have no power over that. If I haven’t been able to change it in five years, I probably never will.
It is a disappointment. It would be nice to have those closest to you be capable of serving as a sounding board, a place to share the concerns and anxieties that come with both having HPS and trying to advocate for the cure. But, at a certain point you’ve got to let go of the “should” in life. Maybe it should be that way, but it isn’t. Move on.
The part that gets on my nerves, that makes me feel the most frustrated and angry, is that I am expected to adopt the same coping technique. In order to accommodate those that wish to deny what’s going on, I have to “play the part.” Frankly, that simply isn’t possible.
I’m blessed. I’m pretty healthy right now. In fact, these past few weeks I’ve been feeling especially great. But, when HPS came into my life it changed things. It changed the way I look at life. It changed the way I look at my career. We all make choices in our lives, and HPS changed the choices available to me.
We all have things that are expected of us. Our parents, our friends etc. all have expectations of us. Indeed we have various expectations of ourselves.
When I was in high school, I was voted most likely to succeed and graduated second in my class. I graduated from college with highest honors. I have always worked hard, gone the extra mile, overcome any obstacle to achieve my dreams. I don’t say these things to brag, but instead to make the point that when I entered adulthood there were certain expectations of me.
Everyone thought that by the time I was 30, I’d be “moving” in my career. It was certainly reasonable to assume at this stage in my life I’d maybe be married, or at least looking at purchasing a home etc. At this point in my life I should have moved on from milk carton crate book shelves and dorm room furniture.
When HPS crashed onto the scene, that was indeed the direction things were heading. I was soon to be moving, starting a new career path, getting married etc. Granted, it might not be the typical experience, but soon after putting together the HPS puzzle, I had to make tough choices. One of them was to stay in the United States and play an active role in the HPS Network instead of moving overseas.
Lots of tough choices have come since then.
I’ve been leery to risk the job hoping that commonly comes with developing a career in journalism because of issues surrounding health insurance. While I might not make much money where I am now, I do have a certain level of negotiating power and leeway because I’ve covered the same industry for so long. This has come in very handy. I don’t think I could have survived the many doctor appointments this winter, the few weeks when my brain was mush from the allergy medications, or the time away to go to NIH if I were a newbie on another magazine staff somewhere. I had to make a trade off.
I’ve made other trade offs as well. While I still freelance, I take on far fewer assignments than I once did. Instead, I choose to spend the time working on HPS-related things. This has meant making less money.
Last year I was asked to serve on a committee to advise on continuing education classes for those in the industry I cover, but in the end I turned it down. It was a bad career move – but it was a good move for me. It would have meant lots of hours of unpaid time that would have added stress to my life and taken away from the things that really matter to me, like the HPS Network.
I should be seeking out opportunities to hussle – to serve on committees and boards for our professional association etc. I should be spending my lunch hours trading shopping stories and coupons with the other editors, or Saturdays at the corporate softball game (even though I can’t play) because these would be politically astute things to do.
Instead, I spend my lunch break every day working on HPS-related things. Frankly, I want to do more for the HPS Network, not less. Who is really going to care a year from now what writing workshop I helped plan? And if the schooze paid off and I made more money etc. – I know only too well how quickly it could all fall apart.
But if a family member refuses to look at the reality of HPS, the choices I’ve made look rather foolish. If they equate working for the HPS Network to something akin to volunteering at the animal shelter (not that this isn’t important volunteer work!), or joining some club, then making sacrifices for this cause seems rather silly.
If you refuse to recognize, for example, the amount of money I’ve spent so far this year on medications, doctor co-pays and cabs to the doctor, then it’s pretty easy to be critical of my finances and wonder what I’m doing with my money.
It’s then pretty easy to stand back from a comfortable distance and wax on about all the things I should be doing. It’s easy to, in subtle ways, question why I live the way I do, why I don’t make more money, or why I never seem to have any time off of work.
Even now, without too many health complications, my life no longer fits the mold those around me expected.
If they fail to even recognize HPS and what it entails, then how can they appreciate my life? My life, minus HPS, would fall pretty short in a lot of “worldly” ways.
But I don’t feel I’ve “fallen short.” I feel I’ve made investments with my time, and that they’ve paid off ten fold. I only wish I could do more. I’m very proud of a lot that we’ve achieved in HPSland together.
When I’m getting that vibe in familial conversations – the one where I feel like I’ve been a disappointment – I want to scream, but look at what we’ve done so far! Look at this. But to those who can’t handle HPS, it’s invisible. It’s like only looking at half of me.
Comments
I'm sorry you do not have the support network you need...especially from those closest to you. Please know while it's not the same, our family is here for you. We pray for you daily. I'm still praying you get a job at NIH or in Washington, D.C. Hang in there! You have done a lot for the HPS community and I'm so appreciative. I want to help the Network, too. I want to be an advocate. I want to get people who can't afford Remicade some help.