We Will See

I stepped away from the community on February 28, 2023 a day after the anniversary of my best friends death. That day was very emotional and upsetting for me and I just couldn't find it in me to be stronger than the situation I found myself in, at no fault of mine. It isn’t the first time I felt the need to walk away, sadly it has happened several times over the past fourteen years. To be truthful this has been the most gratifying and toxic relationship I have ever had. 

At my doctor’s recommendation I sought out “my” people. I sat quietly on the side lines for several years, seeking a place that I could remove my mask and be brutally honest about my life with Ankylosing Spondylitis.

I wanted a place where I could experience the “me too” feeling. Being surrounded by people who got it. Thankfully I found that and so much more. Oh my gosh it was so amazing to watch our advocates/activist fight to raise awareness. I was inspired to do something, but I had no clue what. I came across a post about Sara Frankl. It inspired me to make a gratitude post for those who fight so hard for us. World War III ensued; it was horrible. 

That was the first time I wanted to leave, It was also the first time that I was “labeled” by the community. I was labeled a fear monger. What a horrible word and the first of many labels that I would be assigned to by the community. But thankfully I managed to survive the first of many battles to come and out of that terrible experience Faces of AS was created. There it was, my project, my creation, my salvation and my albatross.

A lot of times in the beginning I was labeled as an attention seeker, mostly because people can't handle it when people are open and honest about uncomfortable topics. In time that label was removed. That project has been one of my greatest life achievements and one of my biggest regrets. It has given me as much as it has taken away from me. A few years ago the website was under attack and I made it private in order to ensure its safety. Sadly no one even seemed to notice. 

This July it will be a year since I posted a new face on the site. It was also my goal to reach 2700 Faces of AS, seemed easy enough since the support groups I belonged in had thousands and thousand of us. But as of today I have 2,224 Faces of AS and it has only taken me 11 years 5 months and 9 days to achieve. Think about that, google will tell you that the average length of a marriage is seven to eight years. I have invested more blood sweat and tears in an awareness project than most people invest in their marriage.

Sometimes I just want to scream come on people help me out, but most the time I just want to scream at myself for investing so much precious time. Time that I will never get back. Time I could have spent with family, friends or just enjoying myself.

Do I regret it? Do I wish I had never ever heard of awareness projects or found the community?

No, I don’t. I have been given so many wonderful experiences because of this community. I have found a family that means so much to me, even if we don’t share the same blood. I do wish I could go back and find the strength to have handled situations better. Sometimes I do wish I had “just’ been a person in the community admiring those who fought so hard for us, instead of trying to become one of them. Mainly that is because I was labeled as a “leader” and that came with a very heavy burden to carry. Especially since all I ever wanted was a safe place where I could remove the mask, instead I ended up having to wear a "suit of armor" in order to protect myself. Which failed miserably I might add.

I have so many emotions going through me while writing this. I feel horrible, I feel selfish, I feel like a coward, I feel as if I abandoned everyone. But I also feel betrayed, and abandoned. Sometimes I feel that no matter what I do it will never be enough.

I am so tired, emotionally, physically, and spiritually. I felt at that time I had no other choice but to walk away for my own sanity and peace of mind.  

Now it just feels like I am being punished. Maybe one day I will figure out a way to navigate and balance both of my worlds. And not worry so much about how things will affect the Faces of AS progress.

For now I will just have to patiently wait for the day I can say "Welcome Faces of AS 2700"

But if I am being honest I am afraid I may not live to see that day.

We will see....