It was simple. First boyfriend, first love, a high school romance set to last forever. We had grown together, started high school together, and had become best friends. And while things were seemingly typical little did either of us know the normalcy would only last us the first two months and the next two years would be anything but easy.
Our love for each other grew every second of every day, and I was happy. For once I could say that I was genuinely happy because he had become my happy. It was like a fairy tale, I was a princess that had finally found her prince and everything finally felt at peace; I was at peace. Although then life happened and well, when life happens it never seems to be in your favor, and this definitely was not in our favor at all. The love of my life, my best friend, other half, and everything in between had gotten sick, and there was nothing I could do to fix it. There was nothing anybody could do to fix it.
In layman's terms, I like to say that his legs just decide to take a break once in a while, although what really happens is that his legs begin to hurt so badly that he can barely move them, and they get so weak it's impossible to do daily tasks and function regularly. Tyler's once normal walk turns into a limp shuffle type thing, or "zombie walk" as we like to say, and he's left to rely on a wheelchair to get him around if we're anywhere but the house. However, some days get so bad that he isn't even able to leave the bed. To get up the stairs he has to use his arms to hoist himself up, and sometimes has to actually take his legs and move them himself with his hands to get them to do what he wants and at times they shake like crazy. His immune system attacks his nervous system and mimics the symptoms of MS and he's forced to wake up and go throughout his day, every day in more pain than I could ever imagine dealing with. He has an undiagnosed autoimmune disease. A disease once thought to be Guillain-Barre', CIDP, and a plethora of others. And while for Tyler this was a somewhat familiar space, to me it was a distant universe I had never visited before, filled with challenges I never in a million years thought I'd have to endure.
I remember when it all first started. There were more days that he didn't go to school and with every new day came more pain. He started falling a lot, mostly down the stairs and finally it hit so hard he moved downstairs to sleep and was essentially bedridden. Although at this time I thought it'd only last a week and be over with, because this doesn't just happen right? You don't just wake up and lose the use of your legs. But it lasted way longer than a week and January was filled with hospital visits, EMG's, blood tests, icky medicine, and no answers. On paper, he looked healthy, but again healthy people don't just stop functioning properly. And for the next two to three months our time together was spent mostly in bed. Watching movies, playing board games, and some days just laying there because it was another bad day and all he wanted was company. Our first "date" was a walk around his kitchen that I forcibly made him do with me every hour to keep his legs somewhat strong. A lot of our conversations were mainly him apologizing and me promising that there was no reason to. I wasn't being "put through anything" and I was right where I wanted to be. Did the situation suck? Hell yeah. However, I knew that if we could get through this we'd get through anything. For God's sake, we were only 16, juniors in high school. We should have been excited about our new found freedom of being able to drive, going to school basketball games, hanging out with friends, going on dates. Though instead we were up late trying to be strong for the other one. Worried about if he'd ever be able to walk again (even though I never had any doubt that he would). It was never something I felt was just dumped on me. Never something that I wanted to run away from. We were going to do this together because there was no way I was just going to let him give up. He was going to beat this and walk again, play ball again, love his life again. He was going to be OK again.
February rolled around and he started physical therapy. The whole goal was to play baseball again which he eventually did, playing Varsity at his high school and travel every weekend during the summer. I still remember the Sunday we played catch for the first time, it was like a breath of fresh air. Things were finally getting better. We finished school and with every day he grew stronger. Able to do more, started driving again, walked normally, could do daily tasks with ease. Summer came around and I think it was the happiest one either of us had had in a while. Things were good. It was over with; we beat this. He beat this. Life was finally getting back to normal.
There were no more days spent pleading to the heavens for someone or something to fix this. No more crying because for the love of everything good in the world why did this happen to the greatest person I had ever met in my entire life? The one and only person I had ever decided to love, to give my heart to. Selfishly I will admit there were times I had wished that this would have happened before there was an "us" because I didn't understand why the universe thought that this was something I could handle. It wasn't fair that other girls got to go on dates with their boyfriends without the worry of a wheelchair or if it was going to be a good or bad day physically. It wasn't fair that they could simply hold their boyfriend's hands with ease and I had to push mine around. Although unselfishly I wanted it to be me instead, because he deserved an extraordinary life, a happy life, a life that he loved. Not this, not this at all. However I made the decision that he wasn't going to do this alone, that I would do absolutely everything to fix it as much as I could, to take the pain away, to make him happy, because while this was something he had to deal with this wasn't him. He was not his illness. He was so much more. This was simply a very very small part. But I learned quickly that this wasn't something that I could just wish away or kiss and make better. I spent nights researching until my fingers went numb, and I was constantly worried that I wasn't doing the right thing. That maybe I was pushing him too much or crossing some sort of line. And there was a lot of learning and understanding that needed to come from my end. Understanding that there were going to be days that he just didn't want to go out, and that sometimes I wasn't going to get a straight answer about plans because he simply wasn't sure how he'd be feeling; because just because he feels good today doesn't mean tomorrow wont be one of the worst days we've had yet. And when I tell you that it was terrifying and a tortuous thing to watch, well that's an understatement. It tore my heart out to see Tyler hurt that bad. To see him so sick and have to go through terrible tests and take medicine that made him everything but himself. And to have to sit there and just watch killed me, because like I said before why him? Why are there no answers? Why does something so strange and in some ways devastating happen to the sweetest, kindest soul? And why now, why in the world did it have to happen now? There were never any answers.
Although in all honesty I began realizing that having answers to those questions weren't important and only made the fight harder. Especially since this wasn't your typical illness. It wasn't something common or at this point really curable to our knowledge. Doctors haven't seen it before and since in writing he's "fine" he's been turned away numerous times after seeking help. The traditional medical system has failed him, failed us, and in his tremendous war to get his body back that was only yet another hard hit. So throwing a pity party constantly was only going to add a roadblock to his recovery, to getting our happy back; and in this whole giant mess that our life had become we just needed to do what we could to get him better because all that really mattered was that he'd be healthy again. And when he finally got healthy again I was so proud to simply be able to stand by his side and say I watched him do it. That I watched him use everything he had inside of himself and pull off a miraculous recovery. He did it and I was grateful that I was able to be a part of his fight. That I was able to love and be loved by such a remarkable person.
However that was only the first year and neither of us could have ever imagined what the next fall would bring.
