In Spite of PH

Kevin and Karen poses with some of their parade
walkers after Marietta's notoriously hot and humid Fair Parade.

It’s November and I am fired up. Is it because it’s PH awareness month? Possibly. Is it because I have learned a lesson in my life with PH and I am excited to keep going from here? Maybe. Final question, is it because I feel the last year has taught me something great, and I am burning to share it with the world? Well... it is a combination of all three, really. A year has passed since my first awareness month, and I have learned so much in the last year; talked to so many people; and I hope, helped one or two people along the way.

In January 2013 I decided that I was going to run for office in my hometown. It is something that I have always wanted to do, and I figured “why not now?” I am feeling better than I have in years, and I figured that if nothing else was learned, I would need to keep myself organized for my health, and to keep my PH from getting the better of me. At the end of the campaign though, as I look back at it, I realize I did something else entirely. As my wife, Karen, and I reviewed everything the other night, as we talked to our friends, the campaign volunteers, and the city officials who helped me prepare for my run for office, we came to a startling conclusion that hit us over the heads after my friend and fellow PHer Teresa Hayes stated “You live your life in spite of PH.” That’s when it hit me, she is right. Karen and I didn’t let PH rule us this year like it did last year; We lived our lives in spite of it; we did not let PH guide us, we controlled it, we took this “new normal” and just made it our “normal.” I didn’t let my pulmonary hypertension deter me, or hold me back. I actually used it as a springboard to start the conversation, I used my PH as the motivation to do this, to live this year with purpose and drive, and I didn’t realize I had done it until Teresa made her observation, and until Karen informed me that I had, in fact, done just that. Not at any point in the last year did we let PH deter us. If I had reservations about anything, Karen helped me find a solution that was beneficial to us both. I walked, I talked, I attended every event I could fit into my schedule, and I did it on my terms, in my way, making PH work for me. 

I understand that for every one of us, something may be different, that what works for me or you may not work for someone else, but it is possible to redefine ourselves with PH, and not let PH redefine us, at least not in a negative light. I have heard patients say that they feel different now, that the new normal has changed them. In some regards that’s true. Perhaps it’s a quiet fishing day now instead of a canoe trip on the lake. Perhaps its a relaxing car ride when before it may have been a bicycle ride. But you don’t have to let pulmonary hypertension change YOU; who we are at the core of our beings. That person who laughs; that person who enjoys a good book in the backyard; that person who strives to make their community better, they still exist. The only thing that changes is the means that we use to achieve our ends. You can still do what you want to do, you can still strive for something more than the sum of your parts. We, as chronic patients, have to deal with a myriad of things that “normal” people do not. That doesn’t mean we can’t make the disease work for us. I already see it in so many patients; people who have taken PH, and found a new cause, a new purpose, a new way of living that doesn’t restrict them. It empowers them to work for our community, and to work for a common cause. As patients in general go, we can do the same thing, but for our families, for our communities, and for ourselves. We don’t have to let PH define us, we can define it, and determine what this disease is to us. Is it the end of our world, or just a new chapter in our lives that we already have so much experience living? Is pulmonary hypertension a reason to curl up, or a reason to redefine ourselves and our purpose on this Earth? I think that it can be just that, a redefinition of not who we are, but what we are here to do.

Karen and Victoria play on the front porch. Life with PH
doesn't mean changing who we are, it just means altering
how we do things. Sometimes if a bike ride is not possible,
it's time to break out the bubbles for our family's
outdoor night.

I have learned so much about myself in the last year and how to live with pulmonary hypertension. This disease motivated me to throw my life into another gear, to do what I could with what I had and strive to make my world a better place to live. I used PH to start the conversation, and then to springboard from it into how we were going to make my town a better place to live. I took so much motivation from my fellow patients who have redefined themselves, and do not let this disease rule them, they rule it. We have to live with pulmonary hypertension, that is an unfortunate fact, but I believe we each can let PH rule us, or we can rule it. This last year, I learned how to not just live with PH, but how to make it work for me, how to use it, instead of letting it use me. I know one thing for certain, if I can do this, without realizing it, then there are so many more of you out there who can do this, too. We all need to find the exact path that works best for us. That is why I am fired up this November, because I have learned that I made my entire year an awareness event, without even trying. I may have lost my election (by 275 votes in a city of 15,000), but I feel I did so much more than just run a campaign, I feel I did so much more than learn to live with this disease; I learned how to redefine myself, I learned how to live my life in spite of PH, and I have learned that anything is still possible, we just have to learn for ourselves how to achieve it.