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Letting Go Of Birthday Wishes

Yesterday was my 39th birthday. I couldn’t sleep at all the night before and wound up spending the day with a bad headache, falling uncontrollably in and out of sleep. And when I was awake I felt really lonely, yearning for love and closeness with a woman and maybe a family. Some days the loneliness hits me really hard. Maybe yesterday I was reminded of my age - that I am a 39 year old man with no partner and no family. I feel like I am 25 (when i got really sick) and most of the time I don’t think about time or my age. Maybe it’s too painful.

Birthdays can be painful times for ME/CFS patients. They are a blunt reminder of us getting older and our life passing by while we are stuck in this meaningless and seemingly timeless void. When I was sicker than I am now I made sure no one told me happy birthday because it was too sad for me to celebrate my birthday. Now, I put my own feelings aside and use my birthday to fundraise for ME/CFS.

The truth is, sometimes ME/CFS is just really difficult and we have to face immeasurable suffering. And sometimes there’s no way out of it but to wait and know that it will pass. So yesterday I just waited. Unfortunately it was my birthday, but ME/CFS doesn’t care about that.

I wanted to make a short video documentary about my life with severe ME/CFS for my birthday fundraiser, but I’ve been too sick to make more than a few shots. So I will have to do that later. This year I will have to let it go and make something less. Even when our intentions are pure and selfless, ME/CFS is merciless and sometimes it just takes things away from us. And we have to let these things go even when they are beautiful or selfless or important. It’s heartbreaking but it’s how we must cope or we get worse trying to hold onto more than our illness will allow. And then ME/CFS wins. FUCK THAT. ME/CFS will never win. Take it, I will rise above you ME/CFS because you can take beautiful things, but you can never take beauty away from me.

I am still gong to do a birthday fundraiser this year so stay tuned. My last 2 birthday fundraisers we have raised enough money for Ron to buy a critical piece of equipment each year that allowed him to do experiments he really needed to do to help figure out the cause of ME/CFS.

I’ll post the fundraiser when I have it ready in maybe a week or so. Thank you everyone for the birthday wishes and for your support and for being the beautiful humans that you are.



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