In Sickness and In Health
How Primary Immunodeficiency got me to I Do
At 32, I was one of the last of my friends to get married. It took me a little longer because in my head I still was not confident I had met someone that could withstand that faithful part of the vows, you know where you promise to love someone and stand by them “in sickness and in health”. My wife jokes that I just wanted to be swept off my feet, and in a way I did.
I am thankful I was diagnosed early enough to have control of my disease before I really started dating or began any serious relationships. Truthfully, I don’t remember how I talked about my disease to “girlfriends” in high school. College was rather comical because my roommates swore my illness was the best thing to attract girls. They laughed when I was sick and someone was bringing soup to me, or volunteering to sit with me during infusions. My college roommates were incredible so don’t read into the laugh line.
By far the BEST story of dating in college was probably with one of my first serious girlfriends. We were both in my dorm and it was infusion day. The nurse was there and the horribly flimsy tape on the glass bottles that hang them on the IV pole broke causing some of the meds to spill on the floor. My nurse had stepped out of the room for a second and I jumped up and yelled “don’t just stand there, that’s my immune system leaking out on the floor.” The poor girl was horrified and ran to get paper towels like it was going to help. I still laugh at the chaos of that scene, my nurse told me how horrible I was for that. We ended up not working out.
I had another serious girlfriend while I was finishing school. I had moved home so that I could take better care of myself. Most would say they did not see us dating, as we were opposites in a lot of ways. I had taken a job after school that caused me to travel a lot; I was working and living in my disease 24hrs a day. I struggled to separate home from work. I had gotten really sick and my Ears Nose and Throat doc wanted me to have sinus surgery. She thought we needed to do surgery immediately. It was the only way to fix the problem. I scheduled the surgery and checked with my girlfriend to be there with me. She had finals, but we would figure it out.
Surgery day came and I was nervous. I had never had major surgery like this before with my parents not by my side. Unfortunately, we never figured out the schedule. While several of her friends were able to take the final early for weddings and various events, she wanted to finish the test with her class. She would drop me off, and then come pick me up after. That was the official end. The relationship dragged on for a bit longer, but I couldn’t shake the feeling of walking into the pre-op area and them asking for my will, and making me sign my instructions for resuscitation. They asked who was there in case something came up and I had to say no one.
My amazing co-workers had arranged to take a couple of shifts to sit in the waiting room to make sure everything was good. One came while I was waiting to go into surgery. I looked around the room and everyone else had some one there. Luckily my friend managed to get a couple of laughs out of me before I had to go in. When I was awake and able to sit up I noticed my surgeon still sitting there. She asked if I was ok and told me she wanted to make sure I woke up to someone. The surgeon called my girlfriend and she had just pulled into the hospital. My other friend came back to check on me and I asked where she was. He had to be the one to tell me the pictures on Facebook say she went to a party after her test.
As soon as I was done recovering, I started looking for a new place to live. When we broke up I said I couldn’t get past that moment, and she reminded me that dating someone like me is hard. It was a direct jab at the disease and I moved out that weekend. The profile picture on her Facebook page was of her and her friends at that party while I was in surgery. It stayed up until I choose to un-friend her from social media. This situation taught me a lot about myself. I look back and realize it also taught me to pay attention to how my disease affects the people around me because that is important. Maybe its fair, maybe its not, but I live with it and I know how to deal, the people around me don’t.
I think after that I struggled. I was jaded about dating and people. I was living alone now and traveling for work a lot. I was lonely and depressed. I decided to start seeing a therapist to help understand what I was going through. I told her one of the hardest parts was landing in a city for work and I had no one to text that I was safe and just landed. After going through all of this for a while, I just decided I needed to do something different. One night while sick, I decided to sign up for a social sports team. I signed up for two-hand football. I suck at football. I took the last few bucks I had left in my bank account to get out of this funk. I didn’t know anyone, but I knew I needed something. This was something.
All of this helped introduce me to several different groups of friends around the city. I got involved and I got out of this funk. Most importantly, all of this led me to a friend’s rooftop barbeque on Memorial Day weekend, 4 years ago. We had all gotten together to relax and catch up. We had been together most of the day and I was exhausted. One of our friends showed up with a new addition to the group, Kristen. She seemed nice, way too happy for how tired I was, but she was pretty.
I won’t bore you with the same details Kristen already provided last week. There are a few funny awkward moments she left out. The worst one was after we had been friends for a while, yet started to spend a lot of our time together. We were having a movie night. We did this a lot, but this one was full of tension. Something was there and we both saw it. The entire night, I never had the courage to kiss her. I was nervous, was I reading this wrong? After the date, I walked her to her car and hugged her goodbye. Seriously? I should have just high fived her. I literally walked around the corner and called my friend. When he asked about the date, I told him,” I just friend zoned myself, no way I come back from this.”
Luckily, I did come back from it. We both look back at that and laugh. Once we were actually dating, we had to talk more about the primary immunodeficiency. It’s like the giant zebra in the room every date after the first one. The first infusion was tough because I was on this weird regimen and I wasn’t sure if we were friends or what. In my mind she was going to have to be cool with it either way so what the heck, we had been together all day and I needed to infuse.
She handled it way too well, better than anyone else. It is funny to hear now that she was freaking out, which in hindsight I totally get. There are a lot of days Kristen seems to handle this disease better than me. That is a great thing because it allows me to be vulnerable. That is not something I let myself be with a lot of people. Kristen knows when I am feeling bad and that is when she looks at me and asks for a spoon count. That is her way of letting me know that its ok, she can take it from here.
Now skip ahead to December 31, 2016 - the day I married my best friend <now it’s cool to be in the friend zone>, the girl who got it, and the one who swept me off my feet. There are two times that I almost lost it crying on my wedding day, 1) seeing Kristen walk down the aisle with her dad, and 2) when we were doing our vows. She turned to me, squeezed my hand, smiled and promised to love me in sickness and in health. That moment right there was everything, nothing prior to that moment mattered.