Today was a bad day for me. My really good friend, who also went through a very difficult disease, told me that while I would have moments of great progress and feelings of motivation and excitement towards healing… I would also experience very low points when reality sets in that I have a long way to go and although I will be healthy, my current reality is very scary.
I went to the Chinese doctor by bike, and when I arrived I stood up and a puddle of urine poured out from me. I was completely soaked from the waist down. Some guy from across the street was staring at me and I gave him a “WHAT” look and rolled my eyes at him.
I then rushed inside, changed my pants and then proceeded with my appointment. While I was waiting for the new supply of herbs I went to a laundromat and washed/dried my pants. Fortunately, I had a pair of workout pants with me because I planned to go to a dance class later in the evening.
Afterwards I was on the way to my job at the high school, near Chelsea Piers, and went to grab some lunch. While waiting, I began to tear uncontrollably. This is the first time I remember crying, and NEVER in public. I decided to text my boss and tell him I wasn’t coming in and I went to the park instead. I found a beautiful spot on the soft grass and laid down far from everyone, in case I had to pee again. Then as soon as I took out my yam “fries” and salad and got settled in, I just started to cry and cry. The truth of my struggle smacked me across the face. Through my focus on getting better I didn’t give myself time to acknowledge the very real emotions and difficulties with this whole disease.
I used to love to jog, ride my bike, hang out in the park, and silly things like shop for food, walk to the subway on a crisp fresh morning. I used to love walking to the end of my block for no other reason but because I could. As I sat on the grass, and as I leave my apartment every day in the summer, I see people enjoying this and I have to admit I am envious. I cannot remember the last time I needed or wanted to do something and I just did. Every single thing I want to do I have to carefully think it through and go to the bathroom many times before Im even comfortable leaving the apartment. And usually I end up not doing it, because I might have to pee on myself and I might urgently need a bathroom. And I know many people who suffer from this who have IBS. Who have so much fear of what might happen. The difference is, this does happen, repeatedly. So I have to psyche myself up to get ready for it to happen again and again and again.
I definitely don’t want to spend my summer inside. But I still have so much fear and so much struggle every single time I leave my apartment. And the worst part is, when I’m riding my bike and I feel it coming, I try to hold it in and my entire body stays shaking, I get tense and a sense of panic overcomes me and yet still I accomplish nothing. Then I’m just exhausted from all the worry I put into trying to hold it and the anger begins to bubble to the surface. And I realize it still has a compete hold over me both physically and emotionally.
And with all that said, I know I am extremely fortunate. I have use of my legs and my arms. I can get on my bike and ride. “It” just sometimes convinces me that I shouldn’t. And sometimes… sometimes… I need to feel that. I need to cry and I need to feel really fucking sad for myself. But even yesterday, after I cried it out… I got back on my bike and went up to 86th street to see J*me, then at the end of the night rode back down to Brooklyn. No matter how frustrated and angry and sad I am, a little (a lot) of urine, isn’t going to stop me. If I need to stop and cry for a few hours.. so be it.. but I’ll be there eventually. (I’ll just bring more back ups of everything!)
Today was a bad day. And that’s OK.