🫂 A Life Reduced, Still Loved
I do not know what comes next, only that I am still here.
The last few months have stripped life back to its bare essentials. At this close-to-the-bone level, I have been cut deeply by illness, exhaustion, and some very dark moments, but also touched profoundly by unexpected tenderness and the steady presence of people who refuse to let me disappear.
On Christmas Day in particular, something cracked open in me. I was talking with someone I grew up with about my health and recent PTSD diagnosis, about the feeling that I failed, and continue to fail at recovery. She cried.
Seeing her cry about my suffering did something profound. It made everything suddenly real. Not abstract, not something I should be “handling better”, not a private weakness I need to tidy away. Real suffering, witnessed and held by another human being. Her tears made me feel seen in a way I have not for a long time. It was beautiful. It was devastating. It softened me.
And then my strength disappeared.
My body folded in on itself. A migraine came crashing down, brutal and disorientating, and I ended up in bed, weak, confused, losing my sense of who I am and what I can do. I tried to pull myself back together with a shower, but eventually I had to submit. An ice cap. A cup of tea brought to me by my family. Small acts of care keeping me tethered to the world.
They were all around me that day. So warm. So loving.
During the migraine, when my body curled inwards, and my mind slipped back into old, frightening places, that familiar and horrible image returned. The urge to be hurt. The idea that physical violence might somehow be a way to escape my neurological pain.
"Someone just kick it out of me! Beat me to my senses."
I know this voice. I know it is not the way out. I know it only tightens the trap. Still, it comes.
What helped was an image from therapy, a visualisation. When this dark spiral begins, I try to transform the violence of the scene into care and serenity. I picture all my loved ones around my bed, my neighbourhood support chat, my therapists, my family, my people, standing there, watching over me, loving me, caring for me. Sweet, kind faces. They gradually help me up out of bed and pull me back towards safety. I open my eyes after I picture them all behind me, with their hands on my shoulder - spirits of love to keep me going.
What keeps returning, again and again, is gratitude. What a beautiful family I have. How deeply they care. How much they wish they could help, do something, fix it. Even when I do not know what would help, feeling the love matters. Feeling the emotion matters. It feels like a step, clawing back towards safety, towards not feeling like a failure, towards not feeling alone. It is these social fabrics that keep us from deaths of despair.
Recently, this kind of physical and emotional collapse has become an almost daily event. Migraines arrive multiple times a day, knocking the life out of me, like being kicked when I am already down. Days blur into each other. Whole days, even weeks, pass without me leaving the house. I am already depressed about my health, and I cannot even build the routines people recommend for getting better because I am constantly lying in bed with ice packs on my head, asking for help with meals, drifting in and out of pain.
There is a deep, dark cloud behind my eyes. I move through the house like a ghoul, barely present. Just rolling in bed, listening to audiobooks, trying to remember that life is still worth it even when I can hardly move.
In that state, my darkest thoughts start whispering that this is it. That this is my life now. Disability stretching endlessly ahead. The weakness and heaviness in my body make it easy for my mind to spiral too.
And still, I try.
I look for small silver linings. The Lord of the Rings trilogy on audiobook, epic and steady. Video games in German so I can feel like I am still learning something. Following and supporting other disabled people online, finding resonance in their stories. Liking photos from nature photographers who are out seeing what I long to see, even if I can only witness it through a screen. These have become a kind of community in this dark moment.
There is something deeply alien about migraine aura. The way it drains strength from my body. The way it makes everything feel unreal. I keep asking, why now? What have I done? I do not have answers. I do not know what is best or what comes next. All I know is that I have to keep moving forward in whatever small way I can.
The dark thoughts still come, but now I have more tools. Visualisation, teddy bears, meditation. Ways to guide myself back to safety again. I am trying to believe, piece by piece, that things can improve. That one therapy after another, one treatment after another, can still make space for recovery.
It has been five years. Now moving into six. They say seven years is average for chronic fatigue and pain like this. I am holding on to that. Not tightly, of course, I am may like this for life, but enough to keep my "Curable" attitude. Crying through clenched teeth. Staying patient. Keeping love in my heart.
These days are not easy. But they reveal a shadow of life that opens me up to empathy, vulnerability and letting in love.
One breath. One day at a time. It is a goddamn fight. But I am still here.
Thank you for reading my personal reflections. I hope they can also offer you some solace. Whilst I am recovering from my breakdown of chronic symptoms, I will be posting more on this newsletter, Round Robin, and less on Citizens Assemble. Feel free to unsubscribe if you're not into that.
I just feel a calling to keep writing about my experience. To break down the stigmas of burnout, depression and all else that ails me. To express the silent scream of my suffering. Perhaps another will resonate, and we can recover together.
There will be art, joy and resistance too. But for now, I must reflect on a few shadows before I can see the light again.
