I decided to start The PHight or Flight Project in hopes of finding my "purpose."
The writings of Dr. Bernie Siegel made me question why did this happen? I imagine most of us wonder "why did this happen to me?" upon finding out the diagnosis of Pulmonary Hypertension. However, Dr. Bernie Siegel wants you to question why this happened in a different way. He thinks of these often devastating, life-altering events as a "spiritual flat tire." According to Dr. Bernie, these "spiritual flat tires" are supposed to redirect us.
I was very upset that Pulmonary Hypertension happened to me, and I still am. I imagine all of us with this diagnosis have felt the same way at one time or another, especially when your chances of developing PH are 1-2 out of a million. I did not smoke or drink, I was vegetarian, I worked out everyday, I ate healthy - but the unexplainable (or as doctor's like to call it "idiopathic,") happened to me anyways. Sometimes I feel like all four of my tires are flat.
I have had a lot of time to reflect upon things. I decided I don't want the purpose of this so-called "flat tire" to be the end of me, so I needed to find a meaning in all this. Before all this happened I was very future oriented. I was always focused on working hard so I could be happy someday. Now I am forced to see how important it is to make time to enjoy things now, and to try my best to live in the present. Those of us facing this kind of illness need to make the present a priority. All of the long-term PHers I have spoken to have said that the best advice they could give me is to not worry about the future- focus more on living in the moment. Perhaps this is advice all of us should try and follow, ill or not.
As a type A personality the thought of living with so much uncertainty is very daunting. I am still in the in-between phase of all of this...waiting for my heart to heal and waiting for the medication to help me stabilize. The feeling of losing control over my life and health has been very challenging as well. This is why I had to find my reason. In a way, finding my purpose and the reason for going through such a difficult diagnosis gave me some control of the control back.
I've decided that the meaning in all of this is to make something good out this experience. My destiny is not to die a premature death, but to live a full life in whatever time I have. For me, I want to share my experience because the waiting part of everything to kick in after starting medication and being diagnosed is petrifying. I haven't been able to come across many fellow PHers who share the same diagnosis story as me, and who have had to wait several months and counting to get off of supplemental oxygen. (This probably has the biggest physical and emotional burden on me.) I have a feeling that more people like me are out there, but that we just haven't "met" yet. My hope is that this blog makes this experience less scary and lonely for at least one person.
I mentioned in my first post that Google is not your friend when it comes to this. I found that I didn't have a lot of places to turn to find hope in all of this. I couldn't find the information I wanted or so desperately needed to see. The specialists told me that the average "life expectancy" with PH is 7 years, but that some people have PH for 20 years or more. They know of people or have patients who have had it for over 20 years are still going. They told me about a women in her 50's who has had PH since her earl 20's and manages to walk a mile each night after dinner! That is great, now where can I find out more about these people who do not fit into the statistics? How can I learn more about them? Now that is what I need to see.
The statistics with this diagnosis are poor- but they are also outdated. I decided that I was also being redirected to share these PH journeys of those who have clearly proved those statistics wrong. For a while I had this idea, but I was to scared to go through with it. I wasn't sure if I was the right person to take on such a task, but then I thought about how I wanted a place for people with PH to turn to for hope. I have found a purpose again, and it is very meaningful to me. I want to make this information, or at least these kinds of experiences with PH, more accessible to others because hope can be so powerful.
This "flat tire" has also taught me about myself, and in a way, about life. Spiritual "flat tires" teach us to laugh longer, love harder, and smile wider when we can. It has made me want to be better. For a while I wanted to give up, but the soul is a powerful thing.
I would recommend reading several of Dr. Bernie's books. As a retired surgeon, he has an interesting approach on the relationship between patients and their healing. He also shares stories of those with terminal diagnosis, who managed to beat the odds in one way or another. Amazingly, these stories share how these patients were able to defy these odds given to them. Although these survivors do not have PH, I think hope in hopeless situations can be shared. Dr. Bernie's believes that hope and positive thinking can effect your health, which I think is a great lesson to be learned as well. His books certainly gave me hope, different strategies on how to "heal" spiritually, and how to better cope with my diagnosis.
For anyone who is interested, below are the books by Dr. Bernie that I have read and recommend. Please click the title's to read the book's description and review on Amazon;
Love, Medicine & Miracles
A Book of Miracles
From Incurable to Incredible: Cancer Survivors Who Beat the Odds
Peace, Love & Healing