Holding onto Hope and Dancing Again, Thanks to Paramore

Holding onto Hope and Dancing Again, Thanks to Paramore

In Life with PH
My obsession with hope began when it was taken away from me nearly four years ago. I was alone in a doctor’s office, watching snow fall through the window. My parents had been taken out of the room to talk privately with my doctor, which I correctly assumed was a bad sign.

A few moments later, my parents and my doctor returned to the office. It was then the doctor officially shared the diagnosis with me of IPAH, and he informed me of my life expectancy. Speechless, I stared out the window silently. It was then that my mom said “It will be OK. We will have hope, and we will get through this.”

The doctor responded with, “This disease is not cancer; hope will not help you.” I understand that deciding to become a PH specialist probably isn’t an easy choice, and perhaps some doctors become jaded over time. It must be difficult trying to treat patients with an incurable, progressive and often fatal disease with the limited resources. And I can only imagine how much death and devastation these doctors must see. But I don’t think that gives anyone the right to take away someone’s hope.

Massey Hall

Obviously, my optimism was fragile, and I felt the remaining hope I had break that day. The disease took away my hope, but the doctor made it more difficult to rebuild it. What do you do when your doctor tells you your situation is hopeless?

I got angry, and my anger ignited me to search for hope.

It was during this time that I began The PHight or Flight Project, where I began finding exceptional people with PH, and asking them to share their stories on my blog. Being exceptional wasn’t just about being a long-term survivor; it was about an attitude, and finding ways to live again after such a heavy diagnosis.

Unfortunately, I’ve learned that hope is hard to hold onto. Even though I was surrounded by so many encouraging stories from my fellow PHighters, I would always go back to feeling like a lost cause. An inspiring story might motivate me for a couple of days, weeks or maybe even a month, but eventually I would feel my hope slip through my fingers like grains of sand.

I felt especially hopeless the first year following my diagnosis. I lost a lot of things, including my career, and spent most of my time crying in bed. But eventually I found my courage, and it was hope that told me to start to trying to live life again instead of just living in fear. I realized that I was letting fear hold me back, and only I could decide whether there was any point in holding onto hope.

Last week, I realized how important hope has been to my life these past few years. If I never found the motivation to leave my bed and try again, I never would have been able to experience things like feeling proud of  accomplishments at work (something I never thought I would be able to say again), seeing a beach again, or most recently, dancing for nearly two hours at a concert.

As I write this, I am currently nursing what feels like a hangover for the chronically ill. I spent my Friday the 13th in Toronto, and went to Massey Hall to see Paramore – something I would have been too afraid to do just a few years ago. Hope encouraged me to try to live again to the best of my ability. I even managed to dance for the first time since my diagnosis, a dream I was afraid to try again for years because of my physically disabilities. It was so freeing to forget about all my fears – even if it was only for one song at a time.

Whenever I start to feel hopeless, I listen to the song “26” by Paramore. They performed that song the night I saw them, and there was something so emotional about hearing nearly 3,000 people sing along to the lyrics. Maybe we are all just chasing that piece of hope that belongs to us and remains unshaken by the hardships of adversity. And maybe these lyrics will help you, too.

Serena and Spencer at Paramore

“Reality will break your heart
Survival will not be the hardest part
It’s keeping all your hopes alive
When all the rest of you has died
So let it break your heart
Hold onto hope if you got it
Don’t let it go for nobody
Hold onto hope if you got it
Don’t let it go for nobody
And they say that dreaming is free
I wouldn’t care what it cost me”

“26” – Paramore

* Featured image courtesy of @paramoreswitzerland.

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

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4 comments

  1. Joanne says:

    What a beautiful song, Serena. Thanks for sharing. I’m sitting here stunned that a doctor would say something like that to a patient and their family. No one has the right to tell you there’s no hope. After dealing with PH in my family since 1995 when my brother was diagnosed and running the local support group since 1999, I’ve seen PH at it’s worst and best. It’s different for everyone. A thought that comes to me very often, after my 19 years with PH is: Of course I crumbled when I got diagnosed. Who wouldn’t? And occasionally, I go back to that dark place, but had I stayed down there, I would’ve wasted 19 years. I’m living for today, focused on my life today. Doing my best-today. Keep dancing! (By the way, I LOVE dancing and go often with my BFF. Music is so helpful in dealing with illness).

    • Serena says:

      Hi Joanne,

      I am glad to hear the song resonated with you as well 🙂

      My family and I were very devastated when the doctor told us that. I was very ill at the time, but who knows how I might have handled my diagnosis if he had a different attitude. As you can imagine, I now see a different PH specialist.

      Thank you for sharing a bit about yourself with me. I am glad to hear that you are doing the best that you can and are focused on living for the moment.

      Hope you keep dancing 🙂

      Serena

  2. Audra says:

    Serena,

    Thank you for your insight and honesty. Thank you for being a beacon of light on a very dark topic. My Cardiologist just discovered through an Echocardiogram that I have Mild Pulmonary Hypertension. I am waiting to see a PH specialist in a couple of weeks and I’m completely freaking out. You’re column is the only thing that I’ve found comfort in. What you write has an impact. It’s important. I am very grateful that you chose to share it. I’m sorry to hear about your initial experience with PH. Looking at him as a human not even as a Dr. there is never a good time for bad manners and that’s just NOT ok. I like Paramore but I feel like I hadn’t truly listened to these lyrics. I’m gonna us it as my mantra. I hope your good days are far greater than the bad. Thanks again!

    • Serena says:

      Hi Audra,

      Thank you for your kind words and for taking the time to read my column. I am very sorry to hear about your recent diagnosis, and hope your future tests go well. Hopefully the lyrics resonate with you as well 🙂

      Wishing you many good days and the best of luck on your journey.

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