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Back In Chains

I’m sorry it has been so long since I have written to you all. I suddenly and unexpectedly got much worse for unknown reasons and I am unable to type. I’m writing this now on Ativan.

I am honestly suffering so much. I lost everything for 7 long years, stuck in a black hole of nothingness. And then in 2020 Abilify allowed me to carve out a little bit of light into that black hole and create a tiny life that brought me so much meaning and purpose and moments of joy and love and life. And that has all been taken back again, lost to the void.

Being unable to communicate again has put me into a state of almost constant panic and stress that is impossible to describe unless you have known it. Even touching my phone often times would make me crash.

I feel so repressed, it's as if a shatterproof, bulletproof glass box has been secured around my body, but it’s not even big enough to fit my whole body. It is much smaller than that. It’s smaller than even my whole mind to fit inside, it’s the size of a tiny corner of my mind and I’m banging on the glass walls screaming to get out. Screams that cannot be heard or felt by anyone.

I pray and wish everyday that this renewed suffering I am facing is alleviating the suffering of more severe ME/CFS patients than me, taking it from them and giving it to me. And that I may be a symbol for the millions of voiceless ME/CFS patients. May we be seen as human beings, our suffering be understood, may the world care, and may those who are able decide to do something about it. All it takes is for the world to care.

I really need to ask for your support right now.

Most of us have lost all of our friends, loved ones and often family. But we have each other. We can make a profound difference in each other’s lives. Please support me by reaching out to 3 ME/CFS patients you don’t regularly talk to and asking them how they are doing and that you hope they are ok. This simple act can completely turn someone’s life around and take them from complete isolation to feeling like they are not totally alone. And who knows what kind of friendship or love could develop and change both your lives.

We are all isolated and alone, and even if the world ignores us we as a community do not have to ignore each other. Together, we can spread love and light to each other to bring light where there is darkness, hope where there is hopelessness and love where all seems forlorn.

I don’t know when I will be able to write you all again, but I love you all so much and I will never give up. For me, for you, and for the world.



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