As I reflect on my healing journey and Team Humanity, I know that it is essential to hang onto hope. I have had many dark days where I lose all hope. On those days the extreme pain, debilitating fatigue, and inability to do the simple tasks, like brush my hair, wash the dishes or walk down the block, things that I took for granted the previous 49 years of my life, cast a huge cloud over my usually sunny disposition. I am in complete and total darkness. It isn’t a shadow, like the solar eclipse, it is pitch…black…despair.
Outwardly I have trouble expressing this despair because I don’t want my injured friends to give up hope. But, I have learned that what we don’t talk about leads to shame and isolation and on those dark days I definitely feel alone and I feel shame for my inability to find an ounce of hope or gratitude to pull me out. I feel alone even though I have so many friends who suffered reactions just like me and they get it. They can describe the same intense fatigue or twitching or stinging or adrenaline rushes that come out of nowhere. And yet, when I am in a pain and fatigue cycle, the PTSD from the early days comes on with a vengeance, the fear of my unknown future quality of life takes over, and I land in a place I think no one else can understand.
On a day like today, when the pain is at a steady 4, my ears are ringing at a 7, and I am able to do laundry and wash dishes, I know better than to think other people cannot understand the despair I was in just days before when stress and pushing through left me no other choice than to go horizontal on the couch. The changes in pain and fatigue change hour by hour. It makes me think of how I have been forced to live by the quote my grandpa used to say with a chuckle and a small sideways smile…”I don’t plan anything more than 4 hours in advance.” What wise words. It forces us to be present and think only of today. No one is guaranteed tomorrow and on my bad days with the level of pain I experience I am not sure I will have one or even want one. I think anyone in a crisis understands the necessity of living minute by minute.
Where do my grandpa’s wise words take me? They take me to the present. To a place of hope. To a place where I know I need to just make it through the next few hours and things will change. That is a fact. Nothing stays the same and neither will the level of pain, fatigue, and despair I am in. Hanging onto change while staying in the present and supporting myself through the discomfort and intense emotions is where the real healing happens. The real healing happens when you can talk about what has happened to you and people don’t snicker or roll their eyes. They listen with compassion and give you a hug or bring you lunch or visit you with flowers from their garden or hand you a Kleenex. They show up over and over and walk alongside you through the pain and carry you if they have to. This is where hope lives. Hope lives in the way we touch each other as people from the same human race. Hope lives in understanding despair. Hope lives in a community built on love and support, like Minnesota Team Humanity. Hope lives in setting judgment aside and showing up in compassion. Hope lives in helping our fellow human kind to turn the pitch, black despair into a passing solar eclipse shadow.
To my injured friends, my non injured friends and to all of humanity. Hang onto hope. Don’t worry about the future. Take the advice from my grandpa and don’t plan more than 4 hours in advance. Stay present and support your body, soul, spirit and the bodies, souls and spirits of your fellow neighbors. We have one precious life and we are wired for connection and love. Spread the love, connection and kindness like you only have 4 hours left to live.
To learn more about the first person I met to start Team Humanity click here:
It has been an incredibly long road and you have taken on other's pain by walking with them. Minnesotans are blessed to have you and the resources that you have gathered and share. It is a privilege to be part of MN Team Humanity.
Thank you for being transparent and sharing your journey of healing with us. Your optimism and grace bring hope to so many.