From Grief To Gratitude (Cystic Fibrosis and the Happy Game)
I’ll never forget the day I first met Jason (not his real name for the purpose of protecting my client’s identity). It’s not every day you see a 22 year old man carting around an oxygen tank. But there he was in my waiting room. Backwards baseball cap, white tank, sweatpants and sneakers. I could smell the oil on his skin and see it in the hair sticking out from under his hat. Since it took him almost 10 minutes to walk 10 feet from the waiting room outside my office, take a seat in my recliner and say “Hello”, I could only imagine how much effort it must have been for him to take make the trip to see me let alone shower. I was quite humbled by the energy he was putting in to see me.
Jason had emailed me when he booked his appointment stating that he had 16% lung function due to cystic fibrosis. The Cystic Fibrosis Foundation describes the condition as “a life-threatening, genetic disease that primarily affects the lungs and digestive system. It is found in about 30,000 people in the United States (70,000 worldwide). People with CF inherit a defective gene that causes a buildup of thick mucus in the lungs, pancreas and other organs.
When mucus clogs the lungs, it can become very difficult to breathe. The thick mucus also traps bacteria in the airways, which can result in infections and inflammation and often leads to severe lung damage, and eventually, respiratory failure. Respiratory problems are the most serious and persistent complication for people with CF.
In the pancreas, the buildup of mucus prevents the release of digestive enzymes that help the body break down food and absorb important nutrients. People with CF often have malnutrition, poor growth, with a high rate of infertility among males. The average life expectancy is 37.5 years.”
As much as he tried to prepare me, I was still shocked to see such a young man so limited by a physical condition. I had never met anyone with Cystic Fibrosis before. It is a pretty rare disease. I asked Jason what it felt like to be in his body. He said,“Imagine the feeling of breathing through a straw or having an elephant sitting on your chest. It’s like having asthma every second, a constant sensation of drowning. If I beat my chest, I can feel and hear the mucus rattle throughout my body, up into my ears. In the winter time, I can feel it freeze and then thaw when I drink something hot or eat soup.”
Jason came to see me for pre-surgery anxiety for what would be his second double lung transplant. He told me that a lung transplant does not cure CF because the defective gene that causes the disease is in all of the cells in the body, not only in the lungs. While his first transplant gave him a new set of lungs, the rest of the cells in his body still had CF and were already damaged. This made it easy for new lung infections to occur, causing the need for another double lung transplant. Luckily, a match had been found for him but there was also the risk that his body would reject the new lungs. Plus the drugs needed to help prevent organ rejection were causing him additional health problems.
The first surgery had been so painful, with so many complications, that he had begun suffering from night terrors and panic attacks as the date of his next surgery approached. So we worked together to clear his anxiety, improve his sleep, and prepare his mind and body for the best possible outcome, even if it wasn’t the desired outcome.
This meant us discussing his feelings around his own mortality and eventual death. Despite all this, Jason seemed to glow as he spoke. He had such a light-hearted and warm disposition, and the best way I can describe how it felt to be in his presence is by saying it was like sitting in a warm jacuzzi every time I heard his voice and watched him speak. I felt like the tables had turned and that he was hypnotizing me in some way!
As we finished our third and final session together, I asked Jason how he managed to stay so positive and serene most of the time even as he told me about the symptoms that caused him sleepless nights. I myself have known the feeling of what it’s like to feel trapped in one's body all too well… that feeling of the life suffocating right out of me with each passing day. Every moment causing pain or provoking grief. The hopelessness of things only getting worse before I will eventually take my last breath. There isn’t a place in the world can go to escape your body or that feeling. I knew this because of my own past affliction with severe conversion disorder (Watch me share my story of recovery at TEDx Rainier). I knew what it was like to have my good days and my bad days. I said, “I don’t know if I’m just catching you on a good day every time you come in to see me, but what’s your strategy dude? How do you maintain such a peaceful way of being?”
He told me, “Since I was young, I realized that if I entertained certain thoughts as reality or if I entertained them for too long, it might not be just a bad day...but a bad week, month or year. It would be super easy for me to suffer from self-pity, envy, resentment, and depression. So I figured out a way to shift my thoughts from sadness, anger, or fear to simply being present and then feeling better. When I was little, I called it The Happy Game.
I learned to not be frustrated or afraid of any thoughts I had. Step one was recognizing it’s just a perfectly understandable thought and it will pass. Step two was to redirect my attention and notice something comfortable, pleasing, or interesting around me. Like the angelic light coming in through the windows, the texture or warmth of my sheets, the smell of blueberry pancakes my mother was making. The third and final step of the game was to think of something I was thankful for or looking forward to.”
As I watched his eyes, facial expressions, breathing, and body language, I could see he really was practicing this happy game meditation almost constantly. If he started to look like he was feeling sad, worried or pained, I noticed how he would take a deep breath, look around, then his gaze would peacefully soften as the hint of a “Mona Lisa” smile would cross his face.
He seemed happier, and therefore “healthier” than almost any other client I'd worked with.
And that’s saying a lot as someone who has worked with athletes in peak physical condition as well as a few celebrities. It got me to thinking...if we are not in immediate danger of death or dying and our basic needs are being met, according to Maslow’s Hierarchy of needs, then there is probably only one real reason we want our lives to be going a certain way.
Whether it’s a certain amount of money in our bank accounts, our careers, our relationships...it’s all so we can operate more and more from a certain feeling. Like the feeling of security vs. fear; love vs. disconnection, serenity or empowerment vs. powerlessness. God only knows the amount of money it would take in Donald Trump’s bank account to make him feel secure versus the number for a third world fisherman.
The power of our thoughts to make us feel happy or feel a sense of despair is undeniable.
I think our minds can be prone to grieve anything that feels like a loss, undesirable or threatening change. Whether it’s our health, a relationship, career, or a move. Heck, a human can even grieve a perceived change. Think of a young man who’s had a crush on a girl since the first day of kindergarten. He finally gets the nerve to ask her out on graduation day, figuring it’s his last chance. She says no thanks provoking a heavy sense of loss within him. His brain is tortured over images representing a future life with a family he’d always imagined. His thoughts reflecting the loss of hope of what could have been.
As humans, we evolved a more complex, triune brain and that has its pros and cons. Over time we developed features that allow us to remember things on purpose, imagine, attach meanings to things. While us humans can build airplanes and write poetry, we can also engage our fight, flight, freeze response more frequently in a way that would be impossible for animals.
What I take away from my time with Jason is an inspiring example of skill building to live in the moment. Some people seem naturally born to have a glass half full kind of optimistic attitude, others not so much. I think some people develop the ability to remain more positive or peaceful because it’s the best way they’ve learned to survive extremely challenging circumstances. It’s a simple exercise in neuroplasticity and you can do it on purpose until it eventually becomes more automatic. You’re teaching your brain to light up a different neural network.
Refocusing is not repressing. That’s why the simple observation and acknowledgment (not a judgment) of a thought or a sensation are both very important parts of mindfulness. After honoring it, you purposefully bring your awareness to what exactly is going on now. You get the added benefits of gratitude by giving your attention to what there is to be grateful for as well as finding something else to be interested in doing next. It will help you to ride the waves of emotion that will surely come and go throughout your life.
I’ve worked with businessmen and women who are perfectly healthy, handsome or beautiful, with loving relationships, more money than God or I know what to do with, and yet are still unhappy because they have never practiced mindfulness or gratitude a day in their life. Jason knows that in order to live a very full life with more peace and gratitude, he must purposely refocus his mind if it ever wanders into unwanted territory. Because he has practiced this skill since childhood, his way of being in the world is more peaceful and positive than perhaps anyone I’ve met (save a monk and my great-grandmother, God rest her soul).
I can only wish the same skill for me along with the rest of the world. I encourage us all to meditate for at least one minute a day on two thoughts. The first is to help adjust our expectations. Honoring the reality that everything is temporary, things change and we are not really guaranteed anything. This helps us to better face and recover from the unexpected or unwanted things that do happen.
Also, remember that no one suffers all the pain, hardship, challenge or tragedy of their life all in a single moment. Nor do we experience all the joys, pleasures, and triumphs all at once. Life is one breath at a time, that’s the only moment you have to handle. Nobody runs a marathon all at once or events eats an entire meal instantaneously. We can always make it through step by step, bit by bit, breath by breath.
Taking some time to think about these thoughts as well as the things you are grateful for at some point during your day (might as well meditate about something beneficial while you clean, cook, walk, etc.) is a gift that will keep on giving. While you're at it, play the happy game every chance you get 😉