A Sneak Peek into Vagus Nerve Girl Memoir
Excerpt from the subchapter Wrecking Ball, hospitalization of 2015:
During that first ten days in the hospital, I was in terrible condition. They had me on 120 milligrams a day of Solumedrol via IV. I could hardly think straight from the combination of the steroids and overall weakness from diarrhea and living on TPN. Only a few days into the hospitalization, we celebrated nine years together, and my heart ached thinking about the possibility that our last anniversary ever could be spent in a hospital room.
Once I saw that things weren’t improving at the hospital after several days of treatment, I thought this was it, that I was going to die. No one told me I was going to – doctors didn’t allude to it or anything – but I felt it. My entire existence just felt different – my soul felt different. My bones and skin, the part that holds me up and keeps me contained, that has always felt like my house. But, inside my house, my cells and muscles and tissue and organs and nerves, that all always felt like a dysfunctional family that drank too much and screamed and slammed doors, but at this moment – it felt slow, still painful, but now hollow. It felt like it would have felt if all of a sudden, the doors weren’t slamming anymore and the screams went silent, but the people were still in the house, knowing that there was no fixing this, and each of them felt that hollow pain of loss and despair. That feeling – being in my soul, and looking at my body laying before me, knowing that on the inside, that was happening – that they were all giving up – that’s why I thought I was dying.
I had somewhat made peace with it. I was tired. For 13 years leading up to that point, I fought. I never made it obvious to anyone how hard it was to live in my skin — I had to make my life about more than Crohn’s disease, and I worked hard to. I knew my limits but often surpassed them, even if it meant that I couldn’t get out of bed for days after. Maybe this wasn’t the smart thing to do, but I did it anyway, and I would do it all over again. But at this moment, in the Kam 3 wing of Queen’s Medical Center, I was tired in every way. If this had to be it, I knew that I had made those 26 years count — because no matter how bad it hurt, I had lived.
As I lie in the hospital bed, emaciated from weeks of being unable to eat or drink anything, with tubes hooked up to me feeding me through the main artery in my bicep, my mind drifted to that woods – the woods where I found solace in for all of my youth – where I’d climb trees to read books and smoke the Virginia Slims I stole from my mom’s purse – where I’d roam into the woods that bordered that meadow and let my work boots get enveloped in the water of the stream that ran through it. I’d splash my face with that cold water to wash away the tears I wasn’t ready to cry. And years later, just as I’d laid out a blanket for Sean and me to have a picnic in the meadow along the woods, below the trees I used to climb, he took my head in his hands and kissed me softly, whispering to me in between kisses – “I love you, you are my best friend – I want to spend the rest of my life with you,” and he dropped to one knee and asked me to marry him – in that meadow that he knew was my safe place, my peace.
From my hospital bed in Queen’s Medical Center in the middle of Honolulu, 5,000 miles away from there, that seemed so far away that I wondered if it still even existed — could that time and place exist in a universe where this existence, here in this bed, also does? Can those two places coincide?
I decided that I needed to have a talk with Sean. At that point, we had been together for nine years. We are two peas in a pod. We know how to argue with the other when arguing is necessary. He cleans the k-cups and I dust and I zig and he zags and somehow two imperfect people found each other and it just really worked. I was sad that we weren’t going to get to be 100 together, but I had to accept that the doors inside my body were no longer slamming and I had to force myself to somehow be okay with that – and I was – but I wasn’t okay with the idea that Sean would spend the rest of his life grieving over mine.
He came to visit that morning and I needed to get out of the room to have this conversation with him, but first, I needed to be enveloped in him. He laid in bed beside me and I curled my face into his neck and breathed in the sawdust and sweat that has become his scent even on days that he isn’t on the job. I curled my fingers into the muscles lining his back and kissed him on the cheek – that cheek that always has a five o’clock shadow, that cheek lined with wisdom and smile lines that stops me in my tracks and takes my breath away. He told me of his events of the day before and something nostalgic got us going and we reminisced about a time when we were younger and plump with that first year’s relationship weight gain, laughing at the traditions we used to have and the ones that we do now. We giggled over how I used to go into the kitchen at Jimmy's Pizza, where we both worked as teenagers, just to get a quick glimpse of him – looking for any excuse to not be out front waitressing so that I could just get one more look at him – and we laughed hysterically about how he’d usually be high as a kite at that little pizzeria, smoking up in the back behind the dumpsters, and then coming in to wash the dishes, realizing he’d been washing the same dish for ten minutes before moving on to the next one.
We snuggled in the hospital bed and he kissed my nose and called me little lady – a nickname he adopted years ago that stuck. I can’t even remember the last time he called me Kelly – but that was okay with me.
I smiled faintly and with that, I asked him to wheel me down to the courtyard so I could get some air. He and the nurses set me up in a wheelchair, TPN bag, morphine pump, and all, and out we went.
Now, he tells me that he knows what I wanted to discuss with him based on the look on my face, but I had a hard time getting it out at the time. Finally, I worked up the courage to have the talk with him that no young couple should have to have. I told him that I didn’t see this going well, that I felt my body shutting down, and that I was coming to terms with the fact that I may not be leaving here. I told him that he was too young to not move on if I died and that I needed him to re-marry, have children, and have a happy life even if it couldn’t be with me. I told him that I was no longer afraid of dying — that all I feared now was that he’d stop living.
He listened intently and then said, “no.”
Confused, I asked, “no?”
“No,” he said. “I’m going to do all of those things with you. You’re not going to die, so get that out of your head right now. I refuse to accept that.”
I have to say, I was surprised — I didn’t quite see it going that way. I knew it wasn’t going to go well, but I thought he was going to be able to see that this whole thing was going to hell in a handbasket. My soul was so tired and at the time, I wished he would just let me die.
Nowadays, looking back, he said his brain didn’t have the ability to compute that much sadness, so he refused to. He says he had to remain in problem-solving mode.
I never brought it up again, and we carried on, just trying to get through the days.
More coming upon publication... don't worry, things work out okay in the end.