Why do bad things happen to good people...? Why is this happening...we did everything right... What now... What if... This isn’t the way it was supposed to be... The list goes on... But the biggest question is...Now what?
I have talked a lot about the “why” on this journey... Why people do what they do... Why we feel the way we feel...Why we react like we do... But we have yet to talk about finding the meaning in the journey and why it is necessary part of the experience. Finding meaning in the pain, suffering and uncertainty of chronic and terminal illness is not easy, natural or contemplated when everything around us feels like it is falling apart.
About 30 years ago, my Dad, who was dying of liver cancer watched a man walk across the campground of our last trip together, and as a tear ran down his cheek he said, “I would give anything to walk across the lawn like that..” SMACK...right in the kisser...At that time of my life, I was hopping from job to job cause I wouldn’t show up and in turn I was moving every other month because I couldn’t pay the rent. In that moment, my perspective, values and standards I had for myself changed. It was the moment I realized I was wasting a life, that my dad would have given anything to have back. Making his suffering count I began to build a life my Dad could be proud of.
That same trip gave us memories that I still reflect on and make me smile, at the time I had no idea how much the stolen moments of laughter, the moments when we clung to each other like it was the last time, and the moments we spent saying all the things we always wanted to say but could not find the right time or opportunity to do so would mean. I don’t think at the time I knew how important every single minute and memory would be and how they would last a life time.
No one teaches you how to watch someone suffer, no one teaches you that feeling helpless, vulnerable and powerless come with chronic or terminal illness. No one tells you that you will grieve long before the person passes away. No one tells you that the most powerful tool you have in your tools box is “love”. When you are in the midst of trauma and feeling at the mercy of the disease, love is the last thing we look to as the answer. Honestly the first time someone said that to me, I got really pissed and angry because we need to fix this, we need to get rid of this, we need to stop the suffering. What I found out is that love is much louder and powerful than any disease. It is in these hard moments that when doused with love, laughter and faith, pain suffering and anxiety fade away and memories are made. These are the memories that will last a life time, make them count.
Jeff suffers everyday in one way or another and what I have learned along the way is that I am the best pill he has. I have learned that we may not get the trip to Jamaica we dreamed of, but the trip to the back yard where we watch the fire and love each other is our Jamaica and I cherish every moment. Every card game that we snark back and forth to each other is a gift no matter who wins. The kisses, the hugs and laughter are the pills the best pills for the suffering. How we love each other through it is what gets us through each day.
Making the journey count for us is sharing our experiences, challenges and victories we have had along the way in the hopes to make someone else’s journey a little better by normalizing some of the things that happen. Through my “Peer Coaching” Service for families and professionals, I walk with people along their journeys to be a sounding board, a mentor, and an unbiased compass to help you to find the right answers for your situation. It's my way of making the journey easier for others than it was for me...
For me the question I come back to when it comes to making this count is... “When I’m standing at the back of the funeral home, is this going to matter...” and if the answer is “yes”, I imagine the story I will tell myself and the memory I will relive for years after this journey has ended, and hold it close to my heart.