Now, don't get too excited. I'm not talking about bedroom passion. No, my discussion today is about big passions. The stars in the sky, the fireworks in the blood, the happiness passion. The passion for living. And while it may seem easy, living with passionately with a disability can be a huge challenge. Our instinctive reaction to bad news is to hunker down, retreat into a figurative cave, and disengage from the world. We need to process news. Sort out the new puzzle pieces in the story of our life. And when they fit again, we return to normal.
With chronic conditions, though, the puzzle pieces never quite fit again. We may have too many pieces to hold at once. Or heavy pieces like pain, fatigue, or loss of abilities. These enormous new puzzle pieces are overwhelming.
The easiest way to handle these uncomfortable pieces is to shut down emotionally. It's the shock, really, and when feelings do return, they are massive. And rather than negotiate with the tempest, we push the tempest away.
Add to this mix new medications and the emotional journey of disability can be a roller coaster. Chronic pain can alter serotonin levels in the brain. It's no wonder that depression of one kind or another often plays into disability stories. Then there's the exhaustion, and the stress of managing activities, and the thousand decisions every day.
Long term, keeping emotions shelved or locked away means that we get through the day with less turmoil. And that can feel successful. If we don't feel so bad, then maybe we won't miss the good times, either.
Getting through becomes the most important goal. Passion. Well, that is a luxury.
Which is all backwards. Because awakening the passion for life, taking those emotions whole and unguarded, allowing the big energy of high and low back into the world . . . all of those things make the disability moments easier. Yes, there are tears. But there is also laughter.
And it isn't a decision to have passion. We must live passionately.
For me, passion lives in creativity. When I write, or paint, I feel the energy shift. Anything held tight becomes part of the flow of an ever-changing world. I can let go of how things should be and enjoy things as they are.
This past summer I rediscovered photography. We could afford a better camera and a whole new world opened up. Then I found Lightroom for photo-editing. And in the evening when I've had a rough day, tinkering with photographs eases all the tension from me. During the day, slowing down to notice sunshine on a flower or the way my kids smile gives dimension beyond my challenges. Discovering our passions adds meaning, fun, and color to our life-experience.
But passion doesn't have to be creative. We can be passionate about the people in our lives, about family and friends. We can be passionate about our community. Or church. Or politics. Finding cures. We can be passionate about travel. About reading.
Whatever inspires you. And it may be hard. It may bring added challenges. But it's the doing that matters. The feeling.
Whatever it is that lights the fire, that will warm the cave where we hunker down.
Being invested and real in the world can be a huge challenge when it seems like everyone might be better off without us. At the same time, our experiences, our highs and lows, our stories matter. We have intense challenges. And pressing the mute button may silence them short or long term. But it won't make the intensity go away.
And we can be the light. We can inspire. We can build a community with respect and compassion as the foundation. We can remember the true matters of life. Our time together is short. Let's make the most of the moments we are given. Enjoy the fire of life.