Its 3 AM and I wake up in massive abdominal pain. At first I think its acid reflux flaring. I get up and drain my G tube and take an extra vial of IV protonix. When it doesn't let up I know something is seriously wrong. After you have had two awake brain surgeries, you develop a pretty impressive pain tolerance.
When it doesn't let up I call the house phone, my parents come downstairs to my room, and they sit with me for a bit. None of us want to go to the hospital and we are just trying to get me through it, hoping that it passes. It doesnt.
We go to the ER. There is an agonizing two hour wait to get into a bed, they were full. Meanwhile I was laying across the waiting room chairs, arching my back and curling as the pain radiates from the front of my body to the back, every few minutes, with a brief period of lessened pain in between.
When I finally get in they give me some morphine and take me to CT. Kidney stones was his first assumption, which made me laugh hard. Really? After all of the things I have been through, kidney stones. Really, universe?
When I come back from CT, I am happily drugged, it was enough to take the edge off. The doctor comes back in, this time a much more serious and somber look on his face.
"Have you ever had a bowel obstruction?"
"No but I have had a post-surgical ileus"
"General surgery is going to come see you, you will most likely need a surgical resection of a portion of your small intestine."
My heart dropped inside my chest. Suddenly we went from 'lol i have a freaking kidney stone after all of this' to 'I may need major surgery'.
I would like to think that for the most part I am calm and collected at the hospital. But not this time. When the doctor left the room and it was just me and my dad I couldn't help but sob.
The general surgeon came in, he was very kind and I instantly liked him. He made me feel at ease in a horrifying situation, he talked with me and not to me, and he understood that at this point in my health-care career, I knew what I was talking about.
He explained that a section of my small intestine had folded and twisted, but it was above my J tube so I could still give myself my PD medication through my tube (if it were below my J tube it would have been a nightmare). He also said that if it were anyone else he would take them into surgery immediately, but given how difficult it is for someone with Parkinson's to recover from major abdominal surgery, and that I was FINALLY recovered from the J tube surgery I had in October (this was May), and that the J tube surgery was a lot more minor than removing a section of intestine, and that surgery had a boatload of complications, he agreed that we would wait.
So we waited. We hooked up my G-tube to suction. Most people in this situation would have been fitted with an NG but I already had a G-tube just hanging out, so it was easy. I was admitted to the hospital and drugged up and we waited. The surgeon visited me every day, he had the nurses watch for any signs of it worstening and we had constant blood work done. A few days later I had an x-ray that showed it was getting better, to everyones surprise my small intestine had essentially begun to untwist itself. And two days after that, most of my pain had calmed down and another x-ray showed that my intestine had fully untwisted. It was a miracle I did not expect and the surgeon did not either. He still wanted me on G-tube venting and loads of extra fluids. Anyone who didn't casually have a G-tube and a central line would have had to stay longer but all of this I could do at home now that I was off the morphine, and I was so done with this week long disaster.
I went home, physically healed and emotionally wrecked. How did this happen? It was so random. No one saw this one coming. It can happen to anyone, my uncle had a much worse disaster of a bowel obstruction, and ended up having to get a good chunk of his small intestine removed. Loads of people I know turned out to have had that happen to them, completely random and unexpected. Your life can pause for a moment and something completely random can change things, and you are never the same again.
People with medical conditions like to pretend that they are okay and that we are all old pros at handling anything that life throws at us. That's the biggest lie of my life. In reality, for the past 8 years, Parkinson's has put me through hell and back and the emotional scars are real. I have been in survival mode for a long time. When you are fighting to stay alive, your personal and spiritual well-being takes a back seat. Ever heard of Maslow's hierarchy of needs? Food, shelter, and water. Those are your basic needs. You can't get to self-actuation without your basic needs being met. And for so long, I was just fighting to live, and so I let my sense of self go. I just focused on the next hurdle in front of me and they kept coming and coming.
I had this silly notion for a while that DBS surgery was going to be the end of my Parkinson's, a cure. That idea lasted all of ten minutes.
This is a really serious problem. Many DBS patients go through a depression post surgery, while they may have monumental success as I did, the realization that this is really just a big Band-Aid kicks in and that feeling quite honestly sucks. I don't have a mature word for that feeling, some things are just crap and I am calling it. Even though you know and you are told this, you have seen others do great but still have Parkinson's, there is something inside you that lingers, and that feeling gets squashed like a bug when it sinks in that you will always have this disease. Quite frankly, this disease is terrible. Here I am at nearly 23 years old, 8 years into a neurodegenerative disorder that has an average survival of 15 years. At 20, before my DBS, I was so affected that I could not live and get around without assistance. I was at stage 4, and I found myself completely debilitated. About a month before surgery I had a terrifying episode where I could not walk or talk. That one will someday be another blog post.
But back to this, the honest reality is that no matter how positive I am, no matter how amazing my support system is (which is seriously amazing by the way, I feel surrounded by love), no matter how many times I can look back and say I got through something really hard and I am proud of that, the truth is that every trial leaves an emotional scar. I am working through all of them, but it is difficult, and part of why I started to blog my experience is to be truly and brutally honest with myself, and to share the realities. I am someone who believes that hope lies in the dark places. And while this is a fairly grim story, here is the light.
My life is a grim story. At 14, I felt a pain in my leg that over a short period of time became full body dysfunction, it stripped me of my mobility and independence. At 18, I started PD treatment and got a good chunk of that mobility back. At 20, I declined fast and hard. By the end of my Junior year of college I was unrecognizable. By that time I didn't think I would make it to 22. But here I am, I had two DBS procedures and I was diagnosed finally with gastroparesis. I got my feeding tubes and central lines and I came back from the brink of death a few times and finally, after all of this, I am starting to thrive. Finally I am at a place where I can start to focus on the future and enjoy right now because I finally have a future that I can see right in front of me.
But I have to heal these old wounds. I have to deal with the fact that sometimes random crap happens. This small bowel obstruction could have easily killed me and it was completely random. It was not something that anyone could have seen coming and had nothing to do with my Parkinson's or with my gastroparesis/dysmotility. It was just a random bump in the road.
So here I stand and I have to choose. I could live my life in fear of what is to come. I could live my life angry about all of the things that happened to me. I could pretend I am okay and that everything is peachy.
But all of that is a lie.
I choose to find the light in the darkness, to search deep within me and allow myself to feel it all, to grieve what is lost and enjoy the now. I allow myself to admit that honestly I am terrified about the inevitable decline of my mobility. But I don't let that keep me from pursuing athletic and artistic goals while I still have my mobility. I am building a happy and beautiful place right now, healing the darkness by slowly letting the light in, and respecting that it does not happen overnight.
So for now, I leave you with this.