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ME/CFS Renaissance

When a healthy person has a good day, they think it is what they deserve and when they have a bad day, they feel like their whole world is crashing down. When a ME/CFS patient has a bad day, they take a breath, accept it, process it and keep going, and when they have a good day, they feel the whole world open up before them, full of possibility. This contrast is stark and defines the transformation we have made in the cocoon of ME/CFS.

ME/CFS has taught us how precious life is, how fleeting it is, how short it is, and what it is that we deeply value, respect, love and cherish in this world. There is truth in the saying that "you don’t truly understand what you have until it has been taken away from you". ME/CFS patients have had most or all of our entire lives taken from us - everything. And this has brought us all closer to understanding what it means to be alive.

We also endure symptoms that are incredibly painful, unjust, degrading, inhumane, and deeply traumatizing. But from this suffering we have found something within ourselves that we did not know existed before; A powerful strength to endure and survive. And a realization of just how badly we want to live and and experience this life. Most healthy people spend most of their time trying to escape the reality of their lives. ME/CFS patients spend most of their lives crawling, begging, inch by inch pulling themselves over hot coals just to have a chance of feeling alive again. We have found an inner strength and an understanding of the splendid magnificence of life that few people in the world have.

The devastating thing about ME/CFS is that we are all still stuck in bed and cannot share this wisdom with the world. But someday soon, I promise you, we will be set free. And when we are, don’t forget the lessons learned here stuck in bed. Keep them with you. Re-engage with the world slowly, transition back into society slowly, so that you can process the lessons you have learned from ME/CFS with a healthy mind and body and apply them to your life. Integrate the ME/CFS mindset into the freedom that you have without ME/CFS. I know, this is probably the last thing you are worried about - how to get your freedom back. But trust me, it will not be as easy as we think it will be. It will be a new (exciting) challenge, maybe a difficult one, with repressed trauma surfacing that we must confront and process. But for the sake of the world, we all have to process this trauma and move on from it and transition into healthy people again while retaining the wisdom of the experiences we have had with ME/CFS so we can share those experiences with the world. When we are set free, go out there and write with this wisdom, make artwork with this wisdom, give talks with this wisom, embody the radiance of a ME/CFS patient who is grateful for every little thing, sees the beauty in every little thing, and appreciates every moment of life. Don’t forget that way of seeing and living.

Let’s all imagine being released from the chains of ME/CFS and spreading the wisdom we have gained from enduring not only a loss of everything that defines being alive, but also often punishing, devastating symptoms that are painful, traumatic and terrifying. We have found profound meaning in life as well as profound strength to endure.

If we can continue to see that meaning and that beauty, and continue to have the strength of perseverance that we have now, with the freedom of a healthy body, there is no limit to what we will all be able to give back to the world, change the world, transform the world. It will be a revolution, a renaissance. The age of The ME/CFS Renaissance.



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