Meet Steve White

Well, it is PH Awareness Month, and truth be told I don't have a lot of pressing things to write about right now. Maybe that's because life is so full with other things... a nice problem to have. But still, I should spend the month doing something, right?

So, I thought it might be neat to bring you the story of others in the PH community who inspire me. I draw so much of my strength and drive from them... and it gets boring (and slightly self-indulgent) to write about my own experiences so much. The first is Steve's. The others are HERE.

So, without further ado, the first introduction.

Meet my friend and fellow Board of Trustees member, Reverend Steve White.

Steve is the chair-elect for the PHA Board of Trustees, and will take the helm this June at our 11th annual PHA International Conference (you are going, aren't you?)

Steve has been really important to the PH journey for many people. He lost his daughter, Christen, to the disease in 2002 and has turned their story into a way to help others (see why he is inspiring?).

More specifically and importantly, he often helps people understand and go through the grief process that is so often associated with the disease. When you have this disease, or know people who do, you loose people dear to you. A lot.

I remember when I first joined the Board, and realized how many people on there had lost someone they loved, and were carrying on the fight in their memory and honor. I often wonder if I would have the strength to do the same... it seems so raw. We have a lot to thank these people for, as they turn their grief and loss into strength and gain for our community.

You should know Christen's story too. But I should not be the one to tell it. Steve does it much better justice, and you can read all about her, and the importance of early diagnosis and pediatric research HERE.

And be sure to subscribe to the blog for more inspiring stories... I have some good ones on deck!

Top 10 Things I am Learning by Having a Rare and Incurable Illness

10. Life comes at you fast. It can come fast, it can go fast. "Make every moment count" means more than you'll ever know until you come face to face with just how limited those moments might be.

9. The little moments can become big moments when you stop and savor.

8. You may develop a rather polarizing love/hate relationship with "big pharma" and related industry. This might require some adjusting of ideals, and you're going to have to learn to be okay with that. They're saving your life. They also hold your life in their hands (this can really piss you off when it goes badly).

7. You might have to start doing your own fundraising towards a cure. There's no really nationalized recognition month, like for some cancers (ah-hem... it's actually November for PH), and corporations aren't going to splatter their merchandise with your purple ribbon. Quite frankly, even the people closest to you might not mobilize on their own initiative (for many reasons). So be prepared to lead the charge. If not you - then who?

6. When you do those fundraisers and that awareness raising, the people you might expect to be there sometimes just... aren't. You can't let this be anything other than what it is. Again, for whatever their reasons. Holding on to that won't make your own work or journey any easier. Let it go.

5. When you do those fundraisers and that awareness raising, people you might never have expected will come bursting through and do amazing things for you. You're going to be touched to your core at the generosity of people and what their care for you and your cause will do.

4. You're going to fall in love with your community. You're going to glow at their triumphs. You're going to be shattered when they suffer. You're going to sit in your home and weep uncontrollably when the disease you share takes them away. You can't help but internalize it. If you let it, this grief will poison you. But if you use it, it will serve to push you only to work harder. But, I will be honest, this part doesn't ever get easier.

3. You are going to loose parts of your life, parts of your plans and hopes and dreams, that you can't get back. This is going to hurt. Take time to mourn those. You might have to do this more than once, and it might hit (again) when you least expect it. But don't stay too long in that black place. There is no moving forward there.

Take the time you need, and then lift your head, shake your shoulders, and resolve to move on. Replace those lost things with new things that make you smile. That make your heart sing. You might discover something new and beautiful you might otherwise have never had.

2. Take care of all of you. While you're attending to your medications and doctor's visits, the demands of your family, your daily tasks... make sure you leave room for you. Don't forget to take time to breath (mindfulness and meditation can change your life), and make sure you fulfill the side of you that loves the arts, or nature, or... whatever it is. You might have to find new ways to do it. But still do it.

1. And the top thing I have learned... you never, ever, ever have to accept the status quo. Don't like the outcome predicted for you? Fight like hell to change it. Don't like the way those involved in your care conduct themselves? Fire them (if at all possible), or go charging in and make a (polite and well documented) stink until it changes.

The outcome of all this has little to do with the disease, the doctors, the medications, or even most of the people around you. It is you. You must take charge. You must advocate. You must make the changes.

And then, no matter the outcome, there will never be a "she lost her battle" at the end. Instead, it will be a fight well fought. A life worth living. A journey and an end to be proud of. And, if you are really lucky, the world left better because of it.

Because I Fly by the Seat of my Pants...

So... usually around this year I am in the early stages of planning my annual Zumbathon.

But this year my life is insane. Why? Well, because I got the bright idea to rent office space for my holistic health coaching practice and now I need to fill it with clients. And that is taking over my life.

So the Zumbathon is on hold, and it's all good... because yesterday I had a brilliant (if I do say so myself) fundraising idea.

In short: There's a national event going on where some racing bikers are doing the Race of our Lives and dedicating their efforts to PH.

And there are events starting to spring up across the country in solidarity, and to contribute to the cause. The cause, of course, is PH. And all proceeds go directly to PHA - the best non-profit around (and yeah, I do say so myself on that one!)

So, now I am one of them! I, along with my dear friend Heather, plan to dedicate an event we were already doing to the same cause.

And it's all crazy. And super fun.

And if you want to know more (and of course donate - pretty please?) go here: http://www.firstgiving.com/fundraiser/colleen-brunetti/RaceofOurLivesVirtualFundraiser

                                                                       Thank you!

If we could...

I think I'm a tad late to the party, as I'd seen this video posted a few times and hadn't taken the time to watch it myself (who has four + minutes these days?)

But... I finally did. And it is so worth posting here.

Why? Because I live parts of this every day. And if I'm not living it, someone I love is. I was a bit shaken at how many of the scenarios I am intimately familiar with... or have considered, or will have to consider.

One thing you can't escape about this disease is the humanity of it all. And I feel that those on the clinical side miss that sometimes. I don't blame them, actually. It is exhausting as a patient. I can only imagine that as a professional dealing with us you must shut yourself off from crisis after crisis at some point, and just respond to the routine with precision, maybe even a script.

But the person on the other end of that script and protocol? That's me.

So I really want to sit every medical professional, care provider, and industry person down who has treated me like one more on a list for the day and remind them... it's me. Whatever you say... I am going to hear terrible news that is going to wreck me for a week, or wonderful news that is going to keep me floating for days. What you say is going to matter. A lot.

Whatever it is, I'm going to be in front of you with a straight face, jot some notes, ask some questions, and then I am going to go into the parking lot or hang up the phone, and really feel what just happened, and over the next several days, I am going to re-live it, and maybe wish I had reacted differently.

I have my major check-up coming up this week. Just a half day at the hospital for a round of tests - not much compared to what some go through. But I can tell you right now - I probably won't sleep much the night before. I never do. Anxiety? Anticipation? What will it be this time? More good news (gosh, I hope so), or bad news I wasn't expecting? What will the following days and weeks and months look like? Because everything that happens in those few hours will set the tone for what I experience next.

Then and Now

Sometimes it is hard to remember my world before I had a growing list of friends waiting for lung transplants because the disease we share took too much of a toll.

What was life like before I (willingly) dedicated hours to fighting different fronts of this disease, the personal and the ones that impact my community? What was life like before I had to take medication four times a day, constantly having a near-miss on a dose as hours speed by, as only they can when you're on a tight medication schedule (Four hours gone by already? Crap!).

Was there a time when exhaustion wasn't the big thing I simply can't overcome on some days?

I'm not sure I miss those days, exactly. Life is still oddly charming. I say "oddly" because... well, this whole journey is in fact crazy.  I guess with a different response, I could loose sight of the many charms and blessings that still come in spades. But, I'm sitting here tonight with so much on my mind, most of it pretty stressful and PH related, and realized I barely remember life "before". Before PH.

I don't think I'm the same person now - for better or for worse. A shorter fuse sometimes, maybe. My tolerance for bullshit is remarkably lower. And a much deeper sense of peace on other things. Because, let me tell you, "2 - 5 year survival rate" puts things in rather quick perspective... you learn to let the little things slide. And the big things? Well, those feel really big.

Wellness

I think about the concept of "wellness" a lot. Part of it is probably because I am a certified health coach now, and so helping people to a place of wellness is what I do.

The irony of this does not escape me. I have one of the most deadly lung diseases on the books, and I teach wellness. Actually, I think having PH gives me a pretty unique platform to do this from. Because, against all odds, I'd call myself a pretty healthy person. First, I was supposed to be dead. But that didn't happen. Then I was supposed to get progressively disabled. And that happened for a short while, but it has reversed. Then the meds were supposedly going to stop working someday. And that hasn't happened.

In fact, in the past couple of years I went from being critically ill to probably the strongest I've ever been. Why?

This is the funny part - everyone I know can tell me why. And the reasons fall into a few distinct categories.

The medical folks: "Your medications are working! Yay for modern science!"

The religious folks: "God has heard our prayers! Yay for miracles!"

The alternative folks: "Medication could never do this! Yay for integrative approaches!" (fill in your favorite cure-all: fish oil, kale, meditation, etc.)

And I sit here listening to all these opinions (one rarely takes into account the next), smiling and nodding, and I just keep thinking... what if, just what if, the approach to wellness is not a single road? What if the definition of wellness, and the definition of health (meaning an absence of sick) are two different things?  Can you be well even though you are sick?

I am not cured by any means. No - PH is still very much a part of me. I am, in fact, still very very sick. I fully realize that all this progress I've made may reverse and all the dark predictions of what this disease can do, what it does to my friends, may happen to me. I suppose the fear of that drives me too.

All I knew when I began this journey is that the status quo of having PH was not going to work for me. I rejected the premise of illness overtaking my life. Idealistic? Absolutely. Stupid? Could have been. But it worked. 

What I knew for sure is that there were medications that I could take, and they would buy me time. But the financial and physical prices would be, are in fact, very high. With no cure yet in sight, this simply was not good enough to be the stand-alone approach. I came to know that if I was going to get well, I had to get out of the PH box as soon as possible.

And that led to a twisty-crazy-ever-changing path to wellness that I am on. I take supplements, I practice mind-body work, I exercise, I drink my kale smoothies, I see my alternative practitioner, I see my doctor, and I take my meds. And perhaps most importantly, I fight like hell. Take the fight out of the halls of the hospitals and into the world. Awareness raising, advocacy, patient support. Striving for altruism is key too. You can not fight this for your own sake alone.

So, no, it isn't just the medication, or the prayer, or the alternative work. A path to wellness is a deeply personal thing. I don't think what I'm doing will necessarily work for the next person. But I do believe we all have the potential to find a personal level of wellness, no matter what the physical condition and prognosis is. And that is a journey well worth taking.

A Tribute

I know this blog is supposed to be about PH. But this post isn't. Well... in a way, it is.

This post is about my grandmother. Helen Marie O'Connor. Who is nearing her 93rd birthday, and who routinely scares the crap out of us, falling ill, making us think this might be "it", and then bouncing back, spunky as ever. She may have done this over a dozen times to date.

My grandmother has lived "with us", well near us anyway, for over 12 years. My grandfather passed away when I was 17, and my parents moved Grandma from her home in New York to be near us, around the time of my wedding, when I was just 21. So, really, much of my life she has just been here.

Here's a secret. I never told her about my illness. I barred my family from doing so as well. I was so afraid I would break her heart. She loves us grand-kids, loves her great grandsons (my son and nephew), fiercely. "So what's new?", she'll always ask. "You're my best pet", she often used to say. I just couldn't imagine responding to that with, "Grandma, I'm sick... and it isn't good." I couldn't stand the thought of giving her sadness when I could protect her. Now that so long has gone by and I am doing better, how would you start the conversation? I don't regret hiding it. Truly, I don't. But clearly, she is so strong. I suppose she could have withstood it.

I spent some time with her recently. In the nursing home where she had resided for nearly a decade. She has outlived not only 93 years of world events, but also my grandfather's cancer and emphysema and death, followed by her own breast cancer, and back surgery, and multiple strokes. Through it all, she somehow thrives.

Sometimes I can't help but think I get my sense of fight from her. I have her pale blue eyes, her stature (but never her tiny waist), her spunk, and her sharp tongue. Oh hell... we even had the same cup size at one point. Go ahead and giggle. I do. But that woman kicked breast cancer in the ass over a decade ago. Just like I intend to kick my own illness. So whatever she has, I'll take it.

This recent weekend visit was different. On this weekend I saw what my parents meant by "Grandma isn't doing so well." with my own eyes. On this weekend, instead of her greeting us up and in her chair, wig in place, eyebrows carefully dawn in, she was in bed, disoriented. I held her frail body upright. My relatively strong arms wrapped around her, holding her up so she could take a sip of much needed water. I changed her shirt... after that sip of water, or a leaky cup, or a faulty straw, or  her inability to drink, whatever it was, soaked her shirt to the skin, necessitating a clean one. She didn't have the strength to do it herself.

As I struggled to change her, to lift her meticulously kept clothes over a body bent and broken, as I caught sight of her body, marred by cancer and age, with the prosthetic boob shoved in her bra... the one she takes pride in placing, even as she is prone to joke about it and make my dad blush... I was just... struck.

Struck by the fragility of life. Struck by the fact that I, her granddaughter, could hold this old precious woman in my arms and offer her comfort... even as she cursed out the nurse who is "a dope" (a fact on which I concur), or her roommate who is "off her rack" (also true). While I giggled at her sharp tongue, and admonished her to be nice, I couldn't help but wish that her spark would always be with me as well.

I see so much of myself in her. Beyond our physical similarities, and beyond our shared middle name. I see her spunk, her will to live, her wish to maintain her dignity though some nice clothes and a little make-up, no matter how crappy she feels. I don't know what her final moments will look like. I hope I am there to hold her hand through it, or just before it...whatever it is I can do with the physical distance that separates us now that I live in a different state. And I wish the same for me. Dignity in the face of illness. Strength in the face of whatever comes. Surrounded by those I love. Enough spunk to put the people around me in their place when they are just plain "dopey".

Truly, she is something to aspire to.

Update: On May 4th, surrounded by family, my dad holding her hand, we said goodbye. Miss you everyday, Grandma. We love you.