I started eating again in 2024.  After 11 years not eating a crumb of food or even drinking a drop of water.  I got all fluids and nutrition from tubes inserted into my body.  For 11 years.  

In 2025 I have another big improvement to announce.  

I have started ‼️ TALKING ‼️ again after 12 years of not saying a word to anyone!  

What will 2026 bring❓

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…every single researcher at Ron’s recent Working Group Meeting - every researcher there said they don’t care if they are the ones to discover the cure for ME/CFS, they just want a cure to be found to end our suffering.  That is unheard of in scientific research or in any field of study - even in the arts…one thing to be grateful for today…

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My Jtube broke finally and I have to go to the hospital tomorrow and I’m feeling stressed...It is so hard seeing the real world and really feeling it and then coming back to my room and closing all the doors…The spontaneity that healthy people show so clearly is at once a refreshing reminder of what life is supposed to be like, but also a shocking and profoundly sad reminder of what my life is like…

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To all those living in silence and darkness. Today we take a moment in silence and darkness to honor your courage, your bravery, your resilience, your strength, and we acknowledge your profound suffering, agony and loss…

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That is ME/CFS. We live with world champion symptoms with no idea what is causing them or what will happen with those symptoms or what our future holds. We hold onto hope but are often crushed by this harsh, unrelenting illness…

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I see people protesting the rights of many marginalized groups and important issues. I see people up in arms over injustices faced by people all around the world…BUT WE ARE DYING. Not to mention suffering endlessly from symptoms that are often only comparable to what any other human being experiences right before death. For neverending decades. And I don’t see anyone even blinking an eye. I don’t see anyone even seeing us. We do not even exist for most of the public in this world…

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The "Big Beautiful Bill" that Trump signed into law on the 4th of July will take away insurance from an estimated 17 million people, mostly from people on Medicaid. I want to tell you how losing Medicaid would impact me directly.…If I lost Medicaid, my parents would have to sell our house to pay for medical expenses that keep me alive…What are we doing America?…When has taking from the poor and giving to the rich been something anyone ever actually champions?

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This 4th of July, if I could fly an American flag, it would be flown upside down…Today should be a disgrace to all Americans…Today President Trump signs into law a bill that will take away healthcare from 17 million Americans…most of them on Medicaid...

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I’ve done most of my "growing up" here in bed. And lately I’ve realized that "growing up" hasn’t been about figuring out the whole universe, but a process of acceptance - accepting that I don’t have it figured out and most importantly accepting myself and loving myself without "knowing it all"…And this is part of one of the saddest things about living with ME/CFS. Teaching us all so much about the essence of life and how to live it in a good way but then keeping us from putting those lessons to use out there in the world…

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I feel like I am in a position where I have to be against the whole world because the whole world is against me…But I don't enjoy that, I didn't choose that. I was put in this position. I love this world. I want to be a part of this world…Not excised like a broken part, tossed aside and marginalized and painted in all kinds of colors that do not define me and which I never chose…

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