It's amazing how one thing going wrong in your life can so easily turn into a titanic sized clusterfuck. When someone turns on the light, everything that you've been hiding in the dark starts casting a shadow. Sometime, shadows make it just as difficult to see as the dark. This whole thing started because I was sick. I was sick beyond what I could handle. Beyond what anyone could handle. Beyond comprehension. Every time I mention to someone that I've had a stem cell transplant, their eyes bug out of their heads. "But you're so young," is the universally accepted response followed by other useless platitudes. It's true. I was young. This final process started when I was just 27. 27. I can't even imagine it anymore. When they figured out what was wrong, I was given almost a year to process the fact that a transplant might be in order.
But really, nothing could prepared me. Nothing could prepared us. After I came home, I remember my friend came over and as soon as she saw me, she threw her arms around me and hugged me as hard as I've ever been hugged. I have to admit, I didn't really know how to react to it. Sometimes, even to this day, it escapes me that it's not just me that's affected by my illness. That the people in my life all have some sort of stake in my survival. Of course I knew that my family (for the most part) put my needs first to the best of their abilities and of course there was Anita. To this day I don't know how she did it. The nights sleeping on that hospital bed. Giving up entire summers in the years she should be out dancing and drinking until the entire night is a blur. Those are the nights she spent sitting in my hospital room, holding my hand, and watching Sportscenter. Looking forward to sleeping on an unforgiving convertable chair/bed/torture rack, I still don't know how she held on. The only thing I'm sure of is that I would not have had the strength in her place. I've always been the weak one.
I'm also amazed by how much my friends have been looking out for me. Of course, maybe they're all in it for the services of a permanent designated driver, but I guess I can give them the benefit of the doubt. I have had friends drive me around, rearrange their schedules, I've had friends travel from Florida just to visit me. Encouraging text messages, helping me up stairs, understanding last minute cancellations, hospital visit after hospital visit, these people have truly proved their worth. Don't the deserve a break? Doesn't everyone deserve a break from all this? Don't I fucking deserve a break from all this? Doesn't my wife deserve to live her life like any one of her peers?
Now that I'm almost 3 years removed from the actual transplant, I can't believe how far I've come and at the same time, how distant the goal seems. I sat today with my neighbor recalling all the times that I was rushed to the hospital because my blood counts were so low that I needed an immediate transfusion. I mused at how difficult it was to find matching blood for me after 2 years because of all the antibodies. I sat and thought about and recited that my current condition is bad, but what I was going through before was much worse. Granted, I'm not going to the ER every 3 weeks, but how much better is my standard of life right now? I keep trying to tell myself that I'd do it all again, but honestly, 2 weeks before my 3rd "rebirthday," I'm just not sure I would.
Of course, the physical issues that have been a result of the GVHD have been awful, but I think just the sheer amount of time that I've been in this almost state of limbo has taken an immense toll on me mentally.
I've been in therapy for over a year and it seems that as my body is recovering that my mind is just purging all the darkness it held inside. All these absolute gems have surfaced from times that I've so long forgotten that I just didn't think I would be dealing with. How am I supposed to cope with my shitty childhood and my recovery simultaneously? Is that fair? To have to deal with the evil I experienced in the years I couldn't protect myself and the illness I developed through no fault of my own? How can I my mind hope to resolve when my body is taking so long? I'm just not sure this is going to turn out like we all wanted.
Lately, I've been listening to a lot of sad songs and having a lot of questionable thoughts. I'm plagued with thoughts of ways to stop the pictures from flashing through my mind. One of the side effects of all the medication I'm on has been that I tend to have an averse reaction to alcohol. If I go out with my friends, I am now normally the designated driver because I just can't drink anymore. Over the last week or so, while I'm laying in bed all alone, the only thing I can think about besides absolutely awful memories are the thoughts of going to the kitchen and drinking myself into a stupor and falling asleep. I think of taking more morphine that I'm supposed to in order to help clear my mind. To just make it go away, ALL of it. If only for the next hour. Lucky for me, I hear my wife breathing as she sleeps and I couldn't do that to her. I've seen what addiction did to my parents' marriage. I've seen what it turned my father and my mother into. No one survives addiction, so right now my better angels have been prevailing, but I'm not sure how long I will hear them.
But really, nothing could prepared me. Nothing could prepared us. After I came home, I remember my friend came over and as soon as she saw me, she threw her arms around me and hugged me as hard as I've ever been hugged. I have to admit, I didn't really know how to react to it. Sometimes, even to this day, it escapes me that it's not just me that's affected by my illness. That the people in my life all have some sort of stake in my survival. Of course I knew that my family (for the most part) put my needs first to the best of their abilities and of course there was Anita. To this day I don't know how she did it. The nights sleeping on that hospital bed. Giving up entire summers in the years she should be out dancing and drinking until the entire night is a blur. Those are the nights she spent sitting in my hospital room, holding my hand, and watching Sportscenter. Looking forward to sleeping on an unforgiving convertable chair/bed/torture rack, I still don't know how she held on. The only thing I'm sure of is that I would not have had the strength in her place. I've always been the weak one.
I'm also amazed by how much my friends have been looking out for me. Of course, maybe they're all in it for the services of a permanent designated driver, but I guess I can give them the benefit of the doubt. I have had friends drive me around, rearrange their schedules, I've had friends travel from Florida just to visit me. Encouraging text messages, helping me up stairs, understanding last minute cancellations, hospital visit after hospital visit, these people have truly proved their worth. Don't the deserve a break? Doesn't everyone deserve a break from all this? Don't I fucking deserve a break from all this? Doesn't my wife deserve to live her life like any one of her peers?
Now that I'm almost 3 years removed from the actual transplant, I can't believe how far I've come and at the same time, how distant the goal seems. I sat today with my neighbor recalling all the times that I was rushed to the hospital because my blood counts were so low that I needed an immediate transfusion. I mused at how difficult it was to find matching blood for me after 2 years because of all the antibodies. I sat and thought about and recited that my current condition is bad, but what I was going through before was much worse. Granted, I'm not going to the ER every 3 weeks, but how much better is my standard of life right now? I keep trying to tell myself that I'd do it all again, but honestly, 2 weeks before my 3rd "rebirthday," I'm just not sure I would.
Of course, the physical issues that have been a result of the GVHD have been awful, but I think just the sheer amount of time that I've been in this almost state of limbo has taken an immense toll on me mentally.
I've been in therapy for over a year and it seems that as my body is recovering that my mind is just purging all the darkness it held inside. All these absolute gems have surfaced from times that I've so long forgotten that I just didn't think I would be dealing with. How am I supposed to cope with my shitty childhood and my recovery simultaneously? Is that fair? To have to deal with the evil I experienced in the years I couldn't protect myself and the illness I developed through no fault of my own? How can I my mind hope to resolve when my body is taking so long? I'm just not sure this is going to turn out like we all wanted.
Lately, I've been listening to a lot of sad songs and having a lot of questionable thoughts. I'm plagued with thoughts of ways to stop the pictures from flashing through my mind. One of the side effects of all the medication I'm on has been that I tend to have an averse reaction to alcohol. If I go out with my friends, I am now normally the designated driver because I just can't drink anymore. Over the last week or so, while I'm laying in bed all alone, the only thing I can think about besides absolutely awful memories are the thoughts of going to the kitchen and drinking myself into a stupor and falling asleep. I think of taking more morphine that I'm supposed to in order to help clear my mind. To just make it go away, ALL of it. If only for the next hour. Lucky for me, I hear my wife breathing as she sleeps and I couldn't do that to her. I've seen what addiction did to my parents' marriage. I've seen what it turned my father and my mother into. No one survives addiction, so right now my better angels have been prevailing, but I'm not sure how long I will hear them.
