A few days ago I had dinner with my ex-girlfriend who I now and will probably always regard as an angel that helped saved my life. After talking for a while about the Dirty John podcast, Janelle Monae’s new album, and internalized misogyny in the queer community, I realize that this is what I miss most. I can talk to this woman about anything. She’s quick and smart and eager to listen to what others have to offer. I then mention how good it is to just sit and talk to her after the insanity of last years events. She mentions that when my 31’st birthday came around she realized an entire year has passed since her and I met, since I got diagnosed with Multiple Sclerosis, and since our breakup. We both talk about how we don’t know how we made it through that time. She says for her being in that hospital with me was was an out of body experience.
I think about it more when I get home. We had completely different experiences and its one that’s very hard for both of us to explain to anyone else. And sometimes each other. I mean, one of us was healthy and one of us wasn’t. But it brought us together in an unconventional and beautiful way. So much so that when asked, I told my next girlfriend that I felt linked with my ex forever, and can’t imagine my life without her friendship. That did not go over well.
I spent my 30th birthday celebrating with just a few friends and my girlfriend at the time who had made sure I had a beautiful cake and balloons, the gathering was small and intimate and perfect, largely due to her. I was also very ill at the time, I couldn’t get up from the couch or see very well, and I got tired easily. I had spent a week and a half in the hospital, and was now recovering at home. I told my girlfriend that I wasn’t big on birthdays but she made sure I felt special that day. My roommate made cocktails for everyone, we listened to music and played games, ate cake and made each other laugh. It was perfect.
In the weeks leading up to my birthday I landed in the hospital after a feeling dizzy for a few days. It was so sudden I didn’t know how to react. This girl who I had only been out with twice offered to come see me to make sure I was okay. And that was it for us. I didn’t leave that hospital for a week and a half and neither did she. Suddenly it felt like we were living in our own hospital bubble. She was handling the nurses, making sure they were taking the best care of me, she was bringing me smoothies and fresh clothes, she was emailing my bosses to make sure they knew I was ill, and she was sleeping in my hospital bed right next to me. I’m not sure how or when it happened for either of us, I just knew she wasn’t like anyone else I had dated. She was selfless and generous and my greasy hospital hair and constant nausea didn’t put her off in the slightest. In the most difficult situation, everything with her felt easy. And just like that we decided to be together. It’s not the easiest thing to let your guard down enough to let someone see you in the hospital every day, especially someone who doesn’t know you well. I did it immediately, and with that she saw me crying in pain, she saw me half naked, she saw me pee into a bucket that measures your urine. There was no hiding for me and that became both a gift and a curse because for me the intensity of being sick and in an emotionally accelerated relationship was too much.
I don’t have the closest relationship with my parents, and the doctors weren’t giving me any answers. I kept telling myself that if my condition got really bad I would tell them but I didn’t realize it was already really bad and because I hadn’t told many people my poor girlfriend was carrying most of the weight of taking care of me. Asking for help was never something I was particularly good at.
I was getting a lot worse very quickly. After three days in the hospital I couldn’t walk, I couldn’t see anything, my face was paralyzed which included part of my mouth which meant that I had trouble swallowing food. The nurses wouldn’t let me shower by myself. My girlfriend was now balancing taking care of me at the hospital all weekend and after work, a full-time job, taking care of her dog, and at this point her social life and private time had gone out the window completely. The guilt of this situation was slowing wearing on me. I was starting to feel like I was robbing her of a normal life, like she didn’t ask for any of this and now she was stuck with me. It was sunny and beautiful every day outside and she was either stuck at work, stuck in the hospital, or stuck at my house taking care of me. Anytime she expressed how tired she was I saw it as further proof that she felt trapped, that she wanted out but couldn’t bring herself to do it. She would tell me she needed a few hours to herself on the weekends and sometimes I would hear that as a personal rejection, like I was dragging her down. Of course she wanted her freedom to see her friends and go to clubs and go shopping and go swimming and I didn’t see any time in the future when I could give her that. I hated how one sided our relationship was becoming. Being physically ill was making me feel helpless, like I was letting her down.
Multiple Sclerosis is something you have for life and every patient feels differently, there was no date and time as far as I knew where I could say I would definitely start to feel better because that’s not the nature of the illness. There was just no telling. Anytime I thought about my relationship this detail would start to wear on me. I would think about how this woman deserved her freedom, that she shouldn’t be with someone who could be bed ridden forever. And then something happened. It’s not clear anymore exactly what. She was having a busy and frustrating day at work, she was tired, she wanted to change our plans for the night. All I remember feeling was that she needed something and it was something I couldn’t give her. This was my fear. It wasn’t anything major but it was enough to set off all my guilt and anxiety and send me into a tail spin. All I was hearing was that this was too much for her. I got upset and she got upset, I told her that I couldn’t handle how sick I was and the guilt, the pressure. All of it. She couldn’t handle being stretched so thin. And just as quickly as it started, it was done.
After a while I slowly started to feel better. My vision came back, I went back to driving, and eventually I even had enough strength to go back to work. There was a moment where I thought my ex and I wouldn’t be able to forge a friendship but it turns out I was wrong. And I’m so glad I was.
As time has passed, the biggest struggle for me is learning how to balance my entire identity as it gets more layered. I’m a femme, queer, woman living with two illnesses (maybe one day I’ll write about the other one). Being that marginalized in so many ways fills me up with both pride and rage. These identities require daily explanations, patience that I don’t always have, and a level of boldness that makes a lot of people uncomfortable. And this is what I’m trying to explore. Dating in your 30’s is different than in your 20’s. It then becomes more complicated when you add illness and queerness into the mix. This feels like new territory and its uncomfortable.