I just experienced something quite extraordinary and simultaneously confusing and painful.

I recently reconnected with an ex girlfriend from 18 years ago when I got better enough from Abilify to make it possible to communicate with her. I didn’t realize this but she was still in love with me after all these years. And she was deeply affected by me being sick. She told me she often cried just thinking about me and missed me unbearably. For a few months we chatted pretty casually off and on, always checking in every few days at least.

This is a girl I had a 1 month relationship with while temporarily living and working in another state. It ended when I left to go back to school and we knew this would happen the whole time. But that month was glorious - something from a movie, TV series or book. The kind of relationship that stories are based on. She is a beautiful, open, deeply honest woman who walks this earth with the very rare courage to let her true self out to the world. I was in constant awe of her and had great respect for who she was. We were beyond happy. We were comfortable together and fit so well. We were completely inseparable the whole time, often spending entire mornings through the afternoon just laying in bed talking. It was magic.

When I left I sort of pushed her away. It was so perfect my impulse was to put it in a time capsule and move on and keep it as a memory and experience. I didn’t want to update our relationship or change anything about it. This turned out to be a mistake because we both wound up going through some trying, incredibly difficult times and suffering greatly. I wish I had been there for her but I didn’t know what was happening in her life. And she didn’t know about me being sick for many years until she saw a picture posted on Facebook of me being wheeled out of my room to go to the hospital for the first time when I had the j-tube installed. She was horrified and deeply saddened. She reached out to my parents and wound up visiting here twice, though I didn’t know it at the time.

The day before Valentine’s Day something happened and the dam broke between us. We let go of holding back and love just poured out between us. We chatted all day long and it became very loving and intimate. We said how much we loved each other over and over and talked, well, as intimately as possible for a chat.

I was in a state of bliss the whole day. I hadn’t experienced intimacy or love in 8 long years. I stayed up late with her there was no way I was going to cut that day short.

The next day on Valentine’s Day we continued talking. And suddenly like a wave that rushes to fill the void left by a passing ship, I was overwhelmed with a whole slew of distressing ideas and feelings all at once. I had suddenly gotten perspective on what was happening and processed it instead of just riding the energetic bliss.

When you’re truly in love with someone it makes you want to be the best version of yourself possible. You want to meet them at a high place and create a beautiful world together. I suddenly started feeling pain about my current condition and fully letting her into this world. This isn’t who I am or want to be it’s just something I’m going through. It hurts to feel this beautiful relationship migrate into severe ME/CFS. The idea of her seeing me like this made me cry. And kind of panic at the same time. I’m already at maximum operational capacity by very calculated measure. And I definitely can’t come anywhere close to the person I want to be - someone with a career and my own home who is an established documentary photographer and filmmaker, artist and activist, with accomplishments to show for decades of hard work. But here I am stripped bare. It’s just me; And a lesser me than if I was healthy. Even my mind isn’t what it could be. How do I love her in this condition and circumstance? Or what’s more be loved by her?

This also opened Pandora’s box as they say. I’d survived 20 years of illness by slowly suppressing more and more aspects of myself. I call it making my world smaller. When I could no longer do something it ceased to exist in my world and I suppressed that part of myself. At this point it had grown to be all of the things that people usually use to create their identity. Love, desire, autonomy, a career, clothes, accomplishments, etc. When I let love and desire out of the box everything else I had been suppressing all these years came out as well. I not only wanted but felt like like I should be able to get up and go outside and generally be free from the extreme limitations this illness imposes.

I felt like I couldn’t breath. So many impulses and so much desire was washing through me all at once. I just kept crying.

I’ve spoken before about loosing all my friends due to prejudice about this illness, something we all experience. But I also experienced a second phase of loss after I couldn’t speak to even my best friend anymore. Through ingenuity and open mindedness I actually managed to find new friends while nearly housebound (most wound up being girlfriends) who understood that I was sick with a real, serious illness without question. But every one of these friends or girlfriends wound up leaving me when they got close to me and experienced first hand what my life was like. They couldn’t handle being emotionally close to someone who was going through something so horrific. Which always hurt so bad. Not just the sense of abandonment but the fact that my life was such a nightmare they couldn’t even handle feeling it second hand. And this was my life; My whole world. I was suddenly simultaneously reminded of the grief I went through from this and also scared that the same thing wound happen with the girl I just fell in love with all over again. And she meant so much to me it would break my heart in a profound way. I kept crying.

I don’t know what is going to happen. But one thing I’m sure of is that walking away from what just happened between us and pushing her away again wasn’t the answer. That would be "throwing the baby out with the bath water" as is often said in Tibetan Buddhism. I needed to ride it out and find a new balance and middle way with this in my life. Find a way to re-suppress everything else again and also find a new routine and new limits with this new huge addition to my life. Something like this was bound to happen at some point when I started getting better. I always knew that getting better would probably be just as difficult and painful as getting worse. Change in general is a difficult thing to handle with severe ME/CFS because everything needs to run on a routine like clockwork.

I realized I needed to talk to her about all of this and ask her to think about loving someone who was going through this. It’s possible that our roots are so strong and deep and she already knows me so well that she’s someone who could.

This was such a blessing. If she was capable of loving me in this state, I needed to find a way to make it part of my life.

We will see what happens. It’s going to be an adventure into unknown, uncharted realms of consciousness and existence.

To be continued...