Getting Mourning and Milestones ready for publication and the tasks involved with getting the word out about the book led me to a CFS/ME crash. As I emerge slowly from the crash, I find myself thinking a lot about how CFS/ME and grief are related for me. Alan Wolfeldt talks about grief as our internal pain and sorrow and mourning as finding ways to share it and bring it out. It is by this active mourning that we begin to heal into our new futures.
CFS/ME and grief have a lot in common. Both bring fatigue, disorientation, slowed cognitive function, loss of identity, and sadness over loss. Both can bring questions about our capacity to function, questions about what if I had done this or that differently, or questions of why did this happen. In a way, having CFS/ME was a training ground for finding ways to live with purpose, meaning and joy while coping with the loss of my husband Jack. Both CFS/ME and Jack’s death challenged me to consciously look for strategies for living within a new set of painful limits and losses.
Writing a book and providing workshops to capture and share those strategies is for me a part of creating an identity that is more about life than the conditions, losses and sorrows that limit it. It is my way to push against feeling defined by grief or by CFS/ME. My experience and the stories I have heard both from grievers and those who struggle with CFS/ME is that our society is not skilled at dealing with either chronic invisible illness or grief over the death of a loved one. Loss is not a popular topic; grief is seen as something to get over; we are told that gratitude for what we still have or what we had should override sorrow.
Instead, I think that we need strategies to help us with the big and the small challenges, the moments and emotions that loss brings.
We need strategies for:
• feeding our souls,
• making it through the day,
• finding needed help,
• managing what is possible,
• finding ways to express what needs to be said,
• finding ways to know what needs to be said,
• connecting to others,
• embracing solitude,
• living with a changed reality,
• sharing loss,
• sharing joy,
• sharing sorrow,
• and sharing everyday moments.
We need strategies for the difficult days, for finding new ways to be part of our communities, for bridging the isolation of loss, for seeking and obtaining the help we need and for finding our own paths to healing. We are not going to get over our losses, but we may find ways to integrate them into a path forward.