For the most part, I think my blog posts tend to end on a positive note. My thoughts tend to resolve that way as well. People always tell me they are impressed by my strength and my fortitude throughout this entire ordeal. They tell me I'm so "positive". And maybe I am. But in order to reach that positive place, I first have to sift through all the negative. In order to remember the happy, I have to wade through the abyss of sadness. This happens over and over again, pretty much on a daily basis. It's a process that I don't really share with many people. So when they ask me how I'm doing, and I say "the best I can", it's the complete truth. The good memories with Jon completely outweigh the bad, but the hard stuff was harder than I can ever really put into words.
Maybe the hardest part for me is that a lot of the difficult stuff Jon and I faced, was faced by the two of us alone. And so without him here, it often feels like there is no one left who really gets it. Don't get me wrong -- we had help. His parents, my mom, his best friend, Dan, his other friends, Katie, the list continues...but at the end of the day, it was the two of us. And when he was confused, it was really just me. And so sometimes it feels like I am left to carry those difficult memories on my own. I know there are plenty of people willing to share the weight, but it's really not something anyone can truly understand.
I have shared a lot in terms of the bigger events that occurred. Jon's death, for example. And as detailed of a description as I gave, the truth is, no one was there except me. I know I did everything I could have for Jon, and that includes NOT doing anything during the last hour of his death. I respected his wishes, and every decision we made, or I made, was done with pure love. But that doesn't make it easier to know I literally watched him die... every moment in that process -- although as peaceful as I could have asked for -- will stay with me for the rest of my life. Having to call his mother. Having to call his doctor. Having to call his best friend. Trying to dress him after he died so he wouldn't be in boxers when his family arrived. Arguing with the paramedics who, hours after he died, questioned my intentions because we didn't have a DNR in the apartment. Picking out the shirt he would wear in the casket. Hiding in the bathroom while the funeral director carried his body out because I couldn't bear to watch that.
But there are so many other things people don't know about. Our daily routine became so far from normal, but I tried to convince myself (and other people) that it was just a bump in the road -- that Jon would recover, and things would return to the way they'd been.
When Jon began having numbness/weakness in his left leg, we figured it was a side effect from the chemo. Watching my tall, strong boyfriend's leg completely give out was horrifying. But I was able to help him get back up, and so we went about our lives, adjusting as usual, to whatever new obstacle we were faced with. We walked more slowly. He would lean on me a little. And then it became a lot. The last few months, I either walked beside him, most of his weight leaning on me, or behind him with my hands on his waist, guding him and making sure he didn't lose his balance. Again, I told myself, and Jon that he would get stronger. We decided on physical therapy, nutrition supplements, anything we could think of ... never talking about the possibility that this may not get better. My back was killing me. I told him to put as much weight on me as he needed to, and he was pretty thin at that point, but it was difficult for me. When I was still working and then dealing with that, my back was pretty much shot. But I never let him think he couldn't rely on me. I would have done anything to make him feel safe -- to make sure he wouldn't fall. Once, he lost his balance and despite my best attempts, both of us hit the ground outside our apartment building. My arm was throbbing, but I got myself up, somehow got him to his feet, and we continued. It is amazing the strength love gives you -- both physically and emotionally.
The first time Jon had a seizure, it was the Tuesday before Thanksgiving. I had just gotten home from class. Jon had been at the clinic with his mom all day getting chemo, and she had just left the apartment. Jon was in the bathroom, and I suddenly heard a crash. I ran to the bathroom, but the door wouldn't open. I called his name, but all I heard was him moaning. I assumed he had fallen and hit his head or somehow gotten seriously hurt. I could see him through the crack of the door, on the floor, his leg blocking me from opening the door. I started yelling, "Jon, I know you're hurt but you have to move your leg, I have to get in. Please, just move your leg so I can get to you." Somehow he did, and as I rushed in and tried to help him up, I could tell something was seriously wrong. He couldn't answer my questions. His body was trembling. I was unable to get him to his feet and he was breathing strangely. The first thought in my head was "seizure," but I didn't really know what to think. I grabbed my phone and called 911. Then called his doctor. Then his mom. Then sat there with his head in my lap, crying and screaming, "please be ok, please be ok, please be ok..." over and over again. I quickly got up to grab a bag to throw some stuff into (as I assumed we'd be staying in the hospital). Jon started to become more alert, and was eventually able to sit up. By the time the paramedics got there, he was able to answer questions, but appeared confused. And then everything changed from there.
That was one of the worst nights of my life. It was probably the first time I ever truly feared I might lose Jon. I remember so many bittersweet and horrible memories after that point. Jon not being able to stand up without wrapping his arms around my neck and having me pull him up. IV fluids at home, a crazy medication regimen, attempting to control his pain, anti-seizure medications that only worked for a few days before we'd have to increase the dose. Jon not eating anything except easy mac and egg drop soup. Jon not being able to answer questions. Trying to get him from the apartment to the hospital for clinic visits. Him fainting and having a seizure outside of the hospital, and in the lobby of our apartment building, and in our apartment on New Years Eve. The stupid inexperienced doctor who told me Jon had a brain bleed and tried to call neurosurgery. Jon being confused and agitated while trying to get a CT scan. The unsympathetic tech who tried to tell me I couldn't go in with him. The nurses in the ER telling me I would be "blessed" because of everything I did for Jon. And yet I still believed things would get better.
I don't think I let myself fully see Jon's deterioration while it was happening. Now, looking at pictures it's so clear to me how sick he really became. And I'm amazed we had as much time as we had. I know it was nothing short of a miracle that he came back to me for a month after being so confused. But I will never forget the faraway look in his eye when he didn't know what was going on. I will never forget him trying so hard to sing, but being completely off tempo and forgetting his own lyrics. I will never forget the look of pain on his face when the headaches were at their worst. I will never forget the sadness in his eyes when we talked about saying goodbye. I also will never forget the love in his eyes that was present throughout it all. Or the sweet smile he gave me after I got my haircut a few weeks before he died.
My planner from 2011/2012 is filled with chemo dates, scans and doctors appointments. When we started one medicine, when we changed to another, each seizure, each blood transfusion... And in addition to that, when the rent was due, when the cable and electric bills were due, food shopping, picking up prescriptions and getting the laundry done, not to mention attending class when I could. I was a busy girl, and somehow, I did it. Now it seems like the simplest things are so challenging. I guess I need a break.
And after I reflect on all of this, I am able to remember the good things. I hope one day, the good things will be at the forefront of my memory, rather than buried beneath so much hardship. In the beginning of our relationship, Jon and I talked about the day when all this cancer stuff would be nothing but a bad memory. We swore we would then work so hard to replace every bad memory with something good. Well, I have more than enough amazing memories with Jon to do that. And I know Jon would want me to continue making happy memories, and cherishing every happy moment.
"The human heart is made from the only substance in the universe that can be made stronger, after it's been broken." <3