It’s funny how life can define you, even when you fight against the definition it forces upon you. It was November of 2004 when I was diagnosed with a rare disease. Acromegaly, my new diagnosis, was a rare tumor that grew in my pituitary. In other words, I was told that I have a tumor in my head only nine years after I lost my dad to brain cancer. No matter how hard I fought it, with one quick diagnosis, all of my visions of self were being redefined against my will.
From the time we are old enough to crawl, we are labeled: social or shy, generous or stingy, gifted or challenged…. And on it goes, for the rest of our lives. It’s really easy to look at a loved one, friend, or stranger and give them a label- to categorize them in a way that we can most efficiently classify them; a prism with which to best see, hear, and interpret all the information they share with us. That said, looking at our own lives through that same critical lens can be incredibly difficult, if not impossible- because we are forced to really analyze the accuracy of the labels we have given ourselves.
Frequently, the meanest, most hurtful labels we are given: loser, failure, fat or scrawny, etc. are given to us by our own self-consciences, and those seem to be the most difficult to shake, because they are self-imposed definitions. Sometimes the easiest way to shake these derisive values is to find someone who we can trust enough to convince us that our own self-defined derision is unworthy, and that we are really the good people we set out to be every day. It is likely that the person is your best friend, and hopefully also your spouse.
I lost my father when I was 22-years old, and spent those key years that most people use to set up their adult lives basically playing surrogate husband to my mother. Meanwhile, my tumor was running rampant in my body, without my knowledge. While I am at peace with my past now, I was secretly a little angry at my mom, because while my friends were finding the loves of their lives, I was driving her from pillar to post on the weekends.
Fast forward to my diagnosis in 2004, it was my mom’s strength that helped me deal with my diagnosis. I was happy to have her to keep me strong, but it was during this time that I started to realize that I was probably going to die alone. Who the hell wants a guy who knows that they have a tumor BEFORE they commit to a life with you?! I convinced myself I was okay with that, and I was damn good company, and if someone didn’t see that, it was their loss, because I really liked hanging out with me! While I truly believed that, it didn’t mitigate the loneliness.
It’s funny… as I grew older, I developed a core group of friends who I enjoyed hanging out with, but I still felt alone. Only an adult single person can identify the feeling of being surrounded by people you love, and still feeling totally isolated. I loved my friends, but I still kind of felt saddened that a big part of me was missing. It’s not that I needed my identity to be wrapped up in someone else, but I grew up in the perfect home. My parents loved each other, and when I say loved, I mean they looooooooooooooooved each other. Sadly, a sentiment rarely found today. My parents had their own lives, but they were always happiest when they were together. They were the couple who actually did fall more in love every day. That’s all I wanted, nothing too much- right? That was simple enough to find. Ha!
I tried it all. Bars. Meh. Religious venues. Not my scene. So I turned to the world of third party introductions. The first time I attempted to meet someone, I remember it was a Thursday night. The newspaper was sitting on the couch open to the singles ads almost daring me to try (it was the 90’s… what do you want?!). So at $2 a minute, I gave it a shot. Nothing… except a huge phone bill. Oh well. I tried. When the internet came about, I think I tried every online service, although I would never tell my friends. At the time, meeting someone on the internet seemed to be reserved for chat board people discussing Dungeons & Dragons, and crazy people. I didn’t feel that I was either.
What did happen was that I became a first date ninja… I could go on a first date without anyone ever knowing, sometimes even the girl I went out with!
I was starting to add new labels to my self-defined collection: loner, loser, single-for-life, and after I knew of my acromegaly, diseased. When do you tell someone? I tried all different times, and it seemed like the time I picked was always wrong- but I didn’t want to hide it from them either, since it is part of who I was, right? I would get close enough to a person to finally feel brave enough to tell them about my condition, and they disappeared in a cloud of dust like the Roadrunner did when Wile E. Coyote was just about to catch him. Oh well. I decided that maybe I wasn’t meant to find my rainbow, and unwillingly grew to be accepting, or at least resigned to it.
The sad reality is that not everyone will find their rainbow. The sadder reality is that some people are married and suffering because they are not enjoying their rainbow. You can see it in their eyes, and hear it in their voices. Whether you are single, or married and miserable, you need to find a way to make the best of your situation. No, it’s not easy, but misery will never breed happiness.
If you are single, focus on what makes you think you are pretty great. If you are in an unhappy relationship, get out before it’s too late. Pre-wedding jitters? That’s your brain telling you something doesn’t feel right about this version of forever. If you are in a marriage with someone you don’t love, work to remember why you fell in love with them. Divorces only make divorce lawyers happy. They will help you fight to your last dollar. Focus on the original spark, and hopefully that will reignite the flame you once had for each other.
I am one of the lucky ones though. The ability to be self-reflective, while painful, offers insight. I saw my friends in unhappy relationships, and I saw my friends who were married to their best friends. I decided that I was going to either marry my best friend or die alone, because to be married to someone I hate is worse than dying alone. While I didn’t always talk nicely to myself, I thought I was a pretty nifty guy, worthy of someone who would treat me as such.
So back to the internet I went. In one last futile attempt to find my special someone, I decided to place an ad on another website. I met a lot of nice people who were absolutely horrible matches for me, but I enjoyed the self-discovery, and figuring out more of what I needed to make me happy. Then, in January, I emailed a girl who I thought looked and sounded pretty interesting. We exchanged several emails, each one longer than the previous, until they were becoming chapter-length. While this excited me, I have been down this road before, and tried to temper my excitement. I agreed to call her on a Tuesday evening after the class I was teaching ended. We talked from about 930pm until about 4am. The next day, we talked again, starting at 8pm, and I joked that we definitely wouldn’t talk till 4am tonight. That was a lie. Still, the phone is easy. In-person is what counts.
Our first date was only about two weeks after we were introduced online. I was anticipatory, but still somewhat detached; after all, I had been here before. Our first date went until the wee hours, as did our second date, the next night. In fact, since our first date, the only days we haven’t shared the same space is when one of us is traveling.
I first mentioned the idea of shopping for rings a mere ten days after we met. While, in hindsight, it seems a little crazy to both of us, we both knew it was right. Somewhere in my subconscious I knew I found my best friend. I realized I had loved her days before when I finally got the courage to tell her about my disease. I was so nervous that I couldn’t even look at her as I told her. I finally spit it out, and she said words I will always remember: “I was wondering when you were going to tell me.” Finally, someone who saw me for me!
After I friended her on facebook, apparently, someone made reference to my book, and she bought it and read it. I paused for a second and immediately replied, “so do I owe you the ten bucks now?” She is sarcastic, funny, and beautiful. She sees beyond all my faults, and I am amazed that she is without any faults of her own! (She may read this, call me and I will tell you all her faults!) This is our life. We joke with each other before anything else. In fact, mere moments before we told each other we loved each other for the first time, we were mocking each other. Our first thought, when things go wrong, is to make jokes. Laughter helps to mitigate pain.
I am not going to die alone. I am going to spend the rest of my life with my best friend, not because of my disease, but in spite of it. It’s not because she was handed to me, I had to fight for her, and be willing to not settle for less than I deserved.
Life without any real challenges is hard enough, and no one is promised a rainbow, but one thing I learned is that the rainbow will not come looking for you. I was always told that love comes when you are least looking for it. While it’s kind of true, because no one wants to date the person who reeks of desperation, if you aren’t out actively pursuing your rainbow, it aint gonna find you.
My disease sucks. And some days are worse than others. But I know that I am not fighting alone, and that makes every day easier. If you are single, you don’t need to wear your disease like a badge. NOT a first date conversation. But it’s also not something you should spring on your spouse on the honeymoon. If you are single and without disease, don’t be afraid of us. Find out about what the person has. If you can live with the symptoms and you really love the person they are, that is true love- enjoy it. Guess what? The human body is a flawed system and it will break down--- yes, even yours! It’s a lot easier to have someone in your life who can understand and will look out for you. If you are married, whether its peaches and cream, or the cream may have started to curdle, embrace that person! Scoop the curdle chunks out and figure out how to see that person the way you did on your wedding day.
I remember when my fiancé’s best friend said to me, “I can’t wait for us to grow old and smelly together!” That was the first time it really hit me. My life was forever changed- for the better. My fiancé and I both LOVE each other, and adore each other’s friends. It’s not easy to find, but it’s worth the patient fight to find it. I love her, and spend every waking moment with her trying to make her happy beyond her wildest dreams, and here’s the kick--- she does the same for me.
We don’t fight. Not because we always agree, or one of us is always surrendering; that is not a relationship; that is sheer dominance. What makes us work so well is that we both compromise. If she wants something I am indifferent to, I will do it, and if I want something she is indifferent to, I get it. If we both have different, passionate desires, we find the middle- and that is where the happiness lies. No one walks away feeling like they lost, or the other person owes them one. If you are keeping score, the loser will always be quietly unhappy. Throw away the scorecard, and embrace the middle ground.
I know that 50 years from now, looking at her in the morning will still make me smile, and seeing her all dolled up will still take my breath away. My disease is still part of my life, and always will be- but it is a small part of a very large picture. The labels I see today are the ones that she has helped me see: good person, generous, loving, kind, and funny. I know that she appreciates the labels I have helped her see, and they are identical.
Thanks for everything, babe. You are my perfect, forever.