I Got Multiple Sclerosis and fell in love

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.

 

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Queer, tired, and in your 30’s

A ridiculously posed picture of me looking like (I’m hoping for) Selena.

Really, this is just a photo of a single, 31 year old, hat lesbian living in Los Angeles.

Here’s a more accurate representation.

I used to have this photo on my dating app to give the girlies the full scope of who I am but I recently deleted the apps.

I COULDN’T TAKE IT ANYMORE.

Maybe it’s my age or maybe it’s my shut-in personality. I don’t know, but lately I feel disconnected from the queers around me.

I’m never going to go to Dinah or Coachella or any crowded queer party at a Hollywood bar with a loud DJ. No offense to the DJ or Dinah, I just don’t go to places with crowds or lines or heat or no places to sit. I want quiet and comfort.

Well, and wine. Let’s not get crazy.

The last two girls I met online were fantastic. Awesome. Great personalities. Sex? Subpar but I’m getting greedy I suppose. I got tired of that feeling too. Having sex out of boredom. At this point I’d rather read one of my books, order takeout, and do some laundry so that I have crisp sheets rather than go on ANOTHER daggone date. Is that what thirties are doing to me?

Making lesbian friends

I met Farrah over a year ago when my co-worker invited me over one Saturday night.  She had pale skin, wore all black, winged eyeliner, and a unique sex appeal. She plopped down on the couch and said, “Alex, why are you hiding your beautiful lesbian friends from me?” We went out dancing and made out a few times on the dance floor. Something about her energy was infectious. She was the kind of dancer that wasn’t especially good but she felt the music in her bones and it showed.

We went out on exactly one date to the movies, I have no idea what we saw. She snuck gummy bears and mini alcohol bottles in her oversized denim jacket into the movies. Farrah was relentlessly committed to having fun no matter where she was. An older woman next was trying to let us know that she was getting annoyed by our constant talking during the previews but Farrah being the I-don’t-give-a-fuck girl that she was, rolled her eyes and simply asked if I was okay and if the woman was bothering me. Farrah knew who she was in this world and didn’t question it.

We made out in her car. She grabbed my hair a little too hard, bit my lip a little too hard. I left not knowing what to think. We never made any effort to go out again. There was some kind of unspoken understanding, like we both didn’t enjoy ourselves fully.

We were to become good friends and nothing more. She was the kind of friend every dyke in this city wanted, she was friends with the most beautiful lesbians, had slept with half of them, and never got too attached. I admired her free spirit and ability to detach. She went on to sleep with my good friend Ray.

The girl who made me lose my mind

 

For the sake of writing shit that no one gives a damn about…I think a lot about dating in your late 20’s and what that looks like especially since that occupies so much of my free time. I was thinking about how different it is now than when I was in my early 20’s. And then I remembered that actually we all were.

We were a lot more open with our emotions, more giving and willing to love. I can’t speak for anyone else but for me it was one person that changed all that. Is that how it is for everyone? You truck along in your relationships being this loving, giving, girlfriend until one day someone hurts you like you’ve never been hurt before and its like FUCK I’m changed forever. That’s how it was for me. I saw this girl and thought I had never seen a more beautiful girl in my life. She had brown wavy hair, a bright smile, and a i-dont-give-a-fuck slouch. She had small tattoos all over her body that forced you to look closer and when she looked at you she LOOKED at you and focused all her attention like there was no where else she would rather be. She listened and had a way of making you sound like you were the most important person in the world. I didn’t even mind that on our first date our waitress was blatantly hitting on her, we both laughed it off because L was the type of girl that made sure to show me she was there to see me, not to fuck the waitress. We walked to our cars in the freezing Baltimore air after that first date awkwardly wanting to touch hands. I had never clicked with someone so quickly.

But I fucked it up. I always saw L as a girl that could have any girl she wanted and I never understood why she was with me. My insecurities ate away at me every passing day. Around month three I realized I loved her and knew she was too guarded with her emotions to ever say anything of the sort. The resentment started to build. Why didn’t she feel for me as much as I felt for her? Little things led to arguments and she would say things that stung then and still sting today thinking back. “I like you more than I ever planned on” she would say. “This is moving so quickly, we both got carried away and I don’t know if I’m ready” she would say. Why aren’t you ready? I would think and cry in the privacy of my own bed because I always knew that even though she scared the shit out of me, I was always ready for her. When it became clearer to the both of us that I was way more attached and the pain was too much to take, I tried to break it off with her but she found a way to tell me exactly the right thing to keep me around. I would tell her I can’t talk to her anymore and she would listen for about two weeks and then somehow convince me to get back together. When we finally did break up I cried every day in my car before class before finally dropping the course. I had to repeat that class during the summer.

It was that relationship that made me go from a hopeful romantic and bright eyed about love to kind of a sarcastic asshole that’s not that trusting anymore. I’m not sure when it happens to people but i know somewhere along the line it changes for most just like it did for me and you’re never quite the same after.

I think back on that time and i think about how immature I was and I beat myself up and start thinking about how I could have handled things differently. But the truth of the matter is we never would have worked out and I’m not sure I’ve ever fully accepted that and now that’s my baggage to bear. And that baggage is also part of the difference in dating when you’re 21 and when you’re 29.

11 months

This month is ending and it’s making me think back to when I came here 11 months ago. On the one hand the whole thing plays out like a bad dream but on the other I’m so proud of myself. In one fell swoop, in one moment of hysteria my brain went, “I can’t do this anymore and I’ll literally do anything to make it work in Los Angeles.” I left my cheating ex-girlfriend, packed a bag and just left. In my mind it was for a week, that’s how long I packed for anyway, but I think now deep down inside a part of me knew I wasn’t coming back.

My parents were so upset that I left without saying anything they stopped talking to me. Three weeks later when I wanted to make arrangements to have my car shipped they said no. I didn’t end up having my car for the next 7 MONTHS. No car, no job, no place to live, no friends, and not a whole lot of money. Since my parents weren’t speaking to me they refused to send me the rest of my clothes which I had dropped off at their house before leaving, leaving me with one weeks worth of clothing. I was staying with three girls who all had busy schedules and lives and my welcome was over by week 2 but the girls let me know they weren’t rushing me. The stress eventually made me sick and landed me in urgent care. Twice. I did this all to myself though, I cried to my sister and my friends but really I only had myself to blame. I wanted a different life but I put zero effort into planning it and this was the result.

My days looked the same for a long time. Everyday I would look for work, look for an apartment (which I couldn’t get because I didn’t have a job), get depressed, and watch Gilmore Girls so that I could escape. ALL SEVEN SEASONS. Once in a while I went to a bookstore nearby and buy used books. Hanging out around the house made me even more insecure about bothering my roommates so I signed up for online dating as a way to get to know people and get to know L.A. and actually it was pretty fun. I went on a TON of dates. They led nowhere in a romantic sense but it got me out of the house and I met a lot of great girls who told me about L.A. and took me to interesting places. And this went on for two months until one day I interviewed for a job that was only scheduled to last for 2 months. I didn’t care, it still meant 2 months of work that I didn’t currently have. I got the job and it ended up lasted for almost a year and introduced me to some of my best friends and most talented people in the animation industry. One of the girls in my apartment had a personal issue come up and moved out leading me to take over her room, which I was finally able to do since I was employed. My parents finally came around and started talking to me and sent me my stuff (and my car!). It’s 11 months later and I’m both shocked and proud that I was able to pull it off.

I look back and it was so scary. It was scary because I made it scary. I didn’t have to put myself in an impossible situation and I know that, but knowing myself I don’t know that I could have done it any other way.