There is something in the air... and I am not referring to the pollen that constantly reminds me of why I actually “kind of” like winter. My allergies aside, there is something magical about this time of year; as my grandmother used to say, “May is the most hopeful month of them all.” I have to agree. May has always been a month of hope for me. Graduations bring the hope of new adventures, new jobs bring the hope of personal betterment, and new friends bring the hope of something more to this life. This year, my hope is for continued improvement with my condition and for a new life adventure that last year seemed to be on hold indefinitely.
Arguably, the hardest part of dealing with PAH is the fundamental lifestyle change that most of us have to endure. What was our daily life is quite often thrown out, and we are forced to adapt to what is so often called our “New Normal.” Activities that we once knew as routine can be forbidden. And for some of us, working and even our hobbies become impossible tasks. Having to make so many changes so quickly can be depressing, and I have heard more than one patient comment on how their work or hobbies—activities now forbidden—were the reason for them to be alive. It is easy to feel the pain in a statement like that; it is harder to understand that all is not lost, and, especially at this time of year, there is hope.
Perhaps it is fitting that World PH Day is in the month of May, particularly for younger patients. If May is the most hopeful month of them all, then I believe in a beautiful symmetry with being a part of the generation of PHers known as “Generation Hope.” We have the hope of new research, new findings, and new medications that are working towards giving us longer, fuller lives. We also have our peers and their stories of improvement, their stories of overcoming obstacles many of us have, and their support as part of the group to get through the new challenges we face in our lives. For my own part, this May is particularly hopeful.
One year ago my fiancée Karen and I had to postpone our wedding indefinitely due to my then “unknown” condition. We had to stop our strolls along nature trails around Marietta and kayaking afternoons and bike rides stopped. We wondered if we would ever get to do these things again the way we once had. Then, we discovered that changes in life did not mean we had to stop life. Kayak trips became fishing trips from the shore; nature hikes became light strolls through the neighborhood. We didn’t let PH take joy from us; we simply adjusted our activities and time together fittingly. We found our own hope in finding things that I could still do, that were adequate substitutes for what we used to do. We found hope in our doctors who diagnosed me, and worked with both of us; we found hope in the medications, and how quickly I seemed to respond to the various treatments. Finally, we found hope when the doctors agreed to release me for pulmonary rehabilitation. One year after we initially postponed our wedding, Karen and I were married this past weekend. We have found yet more hope in the month of May, and we have hope aplenty for the time to come.
May is an amazing month, and I believe it can prove to any of us that hope is there, that joy is there. We have to find it for ourselves; the path of one is not necessarily the path for another. In my case hope came from my improvement while on medication, the joy from finding new, more easily doable hobbies and pastimes; and being able to do that which had been postponed last May. The year takes shape this month. As the days get longer, the weather gets warmer, and we see the rebirth from winter’s cold grasp. This is going to be another year of hope; that there will be new research, that there will be new therapies, and that we will all have a good year. May is the month of hope. It is the month of rebirth. It is the perfect time of year.