So, if you know me at all, you know I’m not exactly quiet. But the truth is, I’m still pretty shy sometimes. Public speaking has never been my thing (unless you are a room full of six year olds, then I’m all good!). But, I’m also pretty vocal and I’ve found the relative anonymity of working online to suit my personality very well. It gives me time to think out what I want to say, to change it six times, to stress over it and change it three more times after that, and t0 finally put forth to whomever cares to read it something I really want to express.
I believe that when you have something like PH you simply can not sit around waiting for something better to happen to you, and you must take your destiny into your hands by being proactive. For some, this involves fund raising. It turns out I am not one of those people! I’ve done fund raising and quite honestly, I don’t like it too much! I admire those who do it so well, but it makes me uncomfortable to ask for help. What works for me though is writing about my experience (clearly, a lot!) and what I know (some, and a little more everyday). It has become my message to other patients and their families that each of us must find our voice, whether it is through fund raising, or networking, or writing, or art, or… well, what’s your voice for PH?
A few months ago I was approached out of the blue and asked if I would be interested in speaking at the annual meeting of the REVEAL registry (www.revealregistry.com). In short, this is a massive national study that is endeavoring to put a modern face to Pulmonary Hypertension. The hope is that the new data will drive more focused research, better treatments, and ultimately a cure.
Would I like to speak to about 130 people who are instrumental in making this study happen: doctors, nurses, respiratory therapists, project managers, etc. Um, no, I was shaking just thinking about getting up in front of all those people…. and YES YES YES! What an incredible opportunity.
The YES! won.
So, in early October, I traveled to Boston and did just that. Writing the speech was a process. I sat down one night and banged out seven pages (about 15 minutes worth of talking). Then I started my obsess, revise, obsess, revise thing. As I said to my audience that night, “What does one say to a room full of people working to make your deepest desire come true – a cure for Pulmonary Hypertension?”
The general assignments I was given was to put a face and a story to the data – “A Day in the Life of a PH Patient” kind of thing, I guess. I’m okay with that, I don’t mind telling my story. But I also wanted to tell our story, the story of the PH experience… how any doctor that isn’t a specialist often risks a PH patient’s life because they simply do not know better, how medications and the fear of the future effects a patient’s ability to cope, how there are patients out there who get to defy every odd and how they inspire me to keep fighting. Many of my PHriends all chipped in their ideas and stories, helping me to shape what I ultimately would say.
The biggest message that I wanted medical professionals to come away with is that when they are treating PH they are treating a whole person, one with hopes and dreams and fears. I’m sure on some level they know that, but the clinical needs can trump other parts of a person’s needs during a routine appointment. I’d like to share the same idea with you, and to that end, here is a brief excerpt of what I spoke about that night. I hope it inspires you to take care of your emotional needs if you are a patient, to understand your loved ones needs if you are a caregiver. And if by chance you are a medical professional, I hope you can remember in the midst of all the incredible physical care you give us (thank you) to step back and say, “and how are you doing with all of this?”.
Having PH is like having a dark crystal ball. You know all the statistics. You know the words “degenerative” and “incurable” are ultimately pretty true. It is a little like living your life just waiting for the darkness to fall, and that is no way to be. So, in so much as is possible, I choose not to be that way.
I have a son to raise. Failure to do so without all the vivacity and energy I feel he deserves from me is simply not an option. Truth be told, if PH can be beat by pure stubbornness, then I’m your girl. I’ve been both credited and chastised for my stubborn Irish ways, but either way, I am quite sure the unstoppable fight in me takes some part in my ability to not just survive PH thus far, but to actually truly thrive with it…
In a particularly rough time a little over a year ago, a wonderful man with heart problems of his own gave me Dr. Bernie Segal’s classic, “Love, Medicine, and Miracles”. Through reading that book I came to the profound understanding that I needed to take spiritual control of my destiny with PH. I truly gave this whole thing up to God, and took the very conscious path of thinking always in positive terms, always with the belief that the cure will be found.
To say this and to live this are two different things. It has to be with every fiber of my being, or I loose a little strength and a little of my fight with each negative thought that enters my mind.
This is not to say I don’t have bad days. I am a strong patient. I am a strong woman and mother. But, a rough appointment or a scary test will still sideline me for a while. My smile and spunk in the doctor’s office, or the positive report to my parents on the phone, can turn to torrential tears when I am first alone after rough news.
I have learned to give myself permission to feel these things for a while, and then to pick myself back up, dust off, and begin again with new resolve. To deny the crappy hand I have been dealt with PH would be unhealthy, to wallow in it would be the same….
(and later)
Co-leading Generation Hope has given me a sense of purpose. Before it started, I was sitting around hating PH, but not too sure what to do about it past that. Now I feel like my ability to share my story, and my assurance that I can rest on these people when I struggle, makes me feel stronger and more powerful against the disease than ever. I hope every patient is encouraged and inspired to find their own outlets and their own ways to fight back.
Showing posts with label Pulmonary Hypertension. Show all posts
Showing posts with label Pulmonary Hypertension. Show all posts
Sunday, November 14, 2010
If You Have to Be Here, It's Worth Being HERE
Original Date: November 5, 2010
Wow, so here we are at the one year (and 3 days) anniversary of this blog! Yes, the time for PH Awareness Month has rolled around again. The time of year when I resolve to write here more than once every couple of months.
I want to start out on a positive note because this year has been, by and large, very positive PH health wise. There have been ups and downs, and a lot of it has been chronicled here over the months, but really, I can’t complain too much.
There have been two huge highlights for me this past year. I think I’ll start with just one for this post.
The first was attending the International Conference in June. What an experience. To sit amongst over 1,000 people who actually get what I’m going through is amazing. The Pulmonary Hypertension Association rocks. They have this way of bringing together patients, caregivers and doctors onto this level playing field I suspect you don’t see too often in medical communities.
I sat in on sessions led by doctors, and some led by patients. I had breakfast with doctors who could answer my questions. I had some questions that couldn’t be answered, but that’s okay. I got to participate in several research projects by visiting the research room and lending my data, and feedback, and many vials of blood.
Most importantly, I got to meet so many patients I have only known online. I was able to channel all the work I’ve been doing over the past year or so and help mentor and lead groups of patients too. That was pretty cool. I was the welcome person for the young adult meet and greet room on the first day.That kicked off meeting this wonderful couple who had traveled all the way from Israel just to find help and resources for their daughter. PH is rare all over the world.
The really cool role I was asked to play was to sit on a panel of “The Next Generation of PHA Leaders”. It was really an honor and a surprise to be asked. I sat up on stage at breakfast one day with a few other go-getters. Two of my co-panelists were fundraiser extrodinaires, and one just happened to have participated in a half-ironman with his PH! Me… I talked about this blog, and co-leading Generation Hope.
There were two particularly poignant events for me. The first was finally meeting patients who just defy my every understanding and expectation of Pulmonary Hypertension. There were some there who are true athletes, and others living lives that the statistics just say aren’t possible. Screw the statistics, I’ve met those people, and am working myself like crazy to become and stay one of them.
The second was listening to Carl Hicks speak. Carl was the outgoing chairman of the board this year. His beautiful daughter Meaghan passed away from complications after her transplant. To hear Carl speak, to see a father wipe away tears for his daughter, but strengthen his voice and his resolve even as he struggled, was both heart-wrenching and inspiring. I cried every time that man got up to the podium. His emotions were raw, and his reason for fighting, for still fighting after his loss, was so powerful. I am beginning to realize many of our PHA leaders are in his shoes, having lost loved ones to this disease but carrying on their memory and their fight long after the loved ones have moved on to finally breathe easy.
We’re really blessed in this community. If we have to have this absolutely shitty hand dealt to us, then I at least don’t want it to be anything else and I don’t want to be involved anywhere else. The advocacy of our community has brought us from zero PH therapies in 1994 to eight different approved medications now. The average survival rate of around six years is still absolute crap, but it is also triple what it used to be. There are eight more drugs in the FDA pipeline that show a lot of promise, and dozens of other research studies going on.
Our doctors are real people who see their patients as real people. When I ran into my docor at a conference last year, he greeted me with a warm hug. I had the privilege of meeting who I consider to be one of our nation’s premier PH specialists a few months ago (more on that later!) and when I e-mailed him to thank him for his time, my response a day later was signed with his first name, no DOCTOR! formality needed. My nurse and I exchange technical questions and e-mails, followed by “and how are your kids?” I admire these men and women who have dedicated their professions and their lives to saving us. The work they are doing is inspiring and I am deeply grateful.
The Pulmonary Hypertension Association is the heart and soul of it all. They listen to their members like you wouldn’t believe. They inspire research, raise unheard of funds, and even help move legislation through Washington. No small feat in the current political climate, but we’re doing it! (Want to help? Click HERE). Most of all, they provide a place of support and refuge for patients. And not just patients in general. They’ve managed to reach out to all these little sub-groups and create communities within the larger PH community. They gear up for and then sponsor conferences around the country, and then awareness month.
Well, awareness month is here. Wear your periwinkle of Fridays. Tell a friend about Pulmonary Hypertension. Tell them about me if you want. But just get the word out there.
Wow, so here we are at the one year (and 3 days) anniversary of this blog! Yes, the time for PH Awareness Month has rolled around again. The time of year when I resolve to write here more than once every couple of months.
I want to start out on a positive note because this year has been, by and large, very positive PH health wise. There have been ups and downs, and a lot of it has been chronicled here over the months, but really, I can’t complain too much.
There have been two huge highlights for me this past year. I think I’ll start with just one for this post.
The first was attending the International Conference in June. What an experience. To sit amongst over 1,000 people who actually get what I’m going through is amazing. The Pulmonary Hypertension Association rocks. They have this way of bringing together patients, caregivers and doctors onto this level playing field I suspect you don’t see too often in medical communities.
I sat in on sessions led by doctors, and some led by patients. I had breakfast with doctors who could answer my questions. I had some questions that couldn’t be answered, but that’s okay. I got to participate in several research projects by visiting the research room and lending my data, and feedback, and many vials of blood.
Most importantly, I got to meet so many patients I have only known online. I was able to channel all the work I’ve been doing over the past year or so and help mentor and lead groups of patients too. That was pretty cool. I was the welcome person for the young adult meet and greet room on the first day.That kicked off meeting this wonderful couple who had traveled all the way from Israel just to find help and resources for their daughter. PH is rare all over the world.
The really cool role I was asked to play was to sit on a panel of “The Next Generation of PHA Leaders”. It was really an honor and a surprise to be asked. I sat up on stage at breakfast one day with a few other go-getters. Two of my co-panelists were fundraiser extrodinaires, and one just happened to have participated in a half-ironman with his PH! Me… I talked about this blog, and co-leading Generation Hope.
There were two particularly poignant events for me. The first was finally meeting patients who just defy my every understanding and expectation of Pulmonary Hypertension. There were some there who are true athletes, and others living lives that the statistics just say aren’t possible. Screw the statistics, I’ve met those people, and am working myself like crazy to become and stay one of them.
The second was listening to Carl Hicks speak. Carl was the outgoing chairman of the board this year. His beautiful daughter Meaghan passed away from complications after her transplant. To hear Carl speak, to see a father wipe away tears for his daughter, but strengthen his voice and his resolve even as he struggled, was both heart-wrenching and inspiring. I cried every time that man got up to the podium. His emotions were raw, and his reason for fighting, for still fighting after his loss, was so powerful. I am beginning to realize many of our PHA leaders are in his shoes, having lost loved ones to this disease but carrying on their memory and their fight long after the loved ones have moved on to finally breathe easy.
We’re really blessed in this community. If we have to have this absolutely shitty hand dealt to us, then I at least don’t want it to be anything else and I don’t want to be involved anywhere else. The advocacy of our community has brought us from zero PH therapies in 1994 to eight different approved medications now. The average survival rate of around six years is still absolute crap, but it is also triple what it used to be. There are eight more drugs in the FDA pipeline that show a lot of promise, and dozens of other research studies going on.
Our doctors are real people who see their patients as real people. When I ran into my docor at a conference last year, he greeted me with a warm hug. I had the privilege of meeting who I consider to be one of our nation’s premier PH specialists a few months ago (more on that later!) and when I e-mailed him to thank him for his time, my response a day later was signed with his first name, no DOCTOR! formality needed. My nurse and I exchange technical questions and e-mails, followed by “and how are your kids?” I admire these men and women who have dedicated their professions and their lives to saving us. The work they are doing is inspiring and I am deeply grateful.
The Pulmonary Hypertension Association is the heart and soul of it all. They listen to their members like you wouldn’t believe. They inspire research, raise unheard of funds, and even help move legislation through Washington. No small feat in the current political climate, but we’re doing it! (Want to help? Click HERE). Most of all, they provide a place of support and refuge for patients. And not just patients in general. They’ve managed to reach out to all these little sub-groups and create communities within the larger PH community. They gear up for and then sponsor conferences around the country, and then awareness month.
Well, awareness month is here. Wear your periwinkle of Fridays. Tell a friend about Pulmonary Hypertension. Tell them about me if you want. But just get the word out there.
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