Wednesday, August 21, 2013


We packed up all of our things and left the hospital yesterday afternoon. I had anticipated hugs with nurses and waving a parade wave down the hall as we departed, this seemed like such a momentous occasion beforehand. But, in the moment it was lacking in fanfare. Ben’s nurse Naomi (who had tended to him back in November last year when he was there for emergency surgery) was nowhere to be seen, the halls were fairly empty and quiet.

We pushed Ben part of the way in a wheelchair stacked with extra pillows but when we got to the elevator he stood up and started pacing, perhaps to alleviate some nerve pain he’s been feeling in his left thigh, perhaps to alleviate some nerves. Four elderly gentlemen in white Shriners uniforms were seated in chairs under the windows between the elevator and the registration desk. (They are the drivers, Shriners members who donate their time to pick up and drop off Shriners patients at their homes in and around LA and beyond. The dad I mentioned in my previous post said they’d come all the way to Las Vegas to pick them up and bring them to the hospital for their son’s appointments and surgeries.) I wanted to take a picture of Ben with them, but he refused. Not in a picture-taking mood, of course. But I really was wanting to document this crossing of the threshold. Last Moments in the hospital for Last Surgery.

Getting Ben into the car was a complex procedure since he has strict rules to not bend, twist or lift for the next six weeks. Try getting into a car without bending your head and neck down or swiveling your torso around. It’s quite challenging. First we opened the doors and he assessed the situation. Then he sat down, a bit of his tush on the edge of the seat, and shortly found that his head could not go straight back into the car. At all. I had visions (panicked) of sending him back up to his room to wait while Mark drove the car back to the rental agency to trade it in for an SUV with a taller doorframe.

Ultimately, he decided to try for the backseat and, lo and behold, was able to manage that. We settled him in, packed the last things into the trunk, buckled up and off we went. I made Mark drive, he’s more careful and slow in general about driving than I, but also because I had an enormous anxiety that I would get us into some kind of accident and Ben would never forgive me.

The trip to my aunt and uncle’s place in Calabasas was easy and smooth. Ben extricated himself bravely from the backseat and headed for a bed where he could relax.

I think it was just about then the exhaustion set in.

I had not had a good night’s sleep the night before. Or the night before that. Or before that. Not that it wasn’t comfortable where I was staying (more on that in an upcoming post). But, let’s face it, restful sleep is not something that comes to me easily in the best of times, let alone when we are heading into a surgery or going through one.

But this exhaustion was bigger. It felt like a monster. I felt like I needed to sleep for a year to recover. And every time I looked over at Mark he was yawning. I was not alone in this.

Ben was comfortably unfolded on my aunt and uncle’s Tempurpedic adjustable bed, tapping away on his phone, then playing Xbox. I retired to my room, kicked off my shoes, and lay down to rest.

My heart started pumping, hard, fast.

I remembered to breathe. I noted my poor, anxious heart. I closed my eyes.

I tried to surrender to my exhaustion. I tried to, but it was nearly impossible. I had big gratitude for where we were, on the other side of the surgery, at a peaceful and loving haven. I breathed in the beautiful quiet, the house plants, the light, the colors and the comfortable bed I was laying upon. No go.

I took a stroll and found another spot to rest, on a chaise longue next to the pool. I leaned back on soft white towels laid out as if it was a posh hotel, and felt the warmth of the Southern California summer day envelope me. I closed my eyes again, trying to just rest and relax into the moment. I listened to the birds. I breathed some more. Despite all this, it was not easy.

There have been years of build up to this exhaustion. From the first brain surgery over seven years ago, to today, I have been holding myself together to manage to survive. I have been holding my breath, crossing my fingers and toes, praying, meditating, planning, and researching. I don’t look like a wreck from the outside, and in some ways I don’t feel like it on the inside. But in this moment, when I measure the full volume of my exhaustion, then I know the toll it’s taken on me.

We had a lovely dinner with my aunt, uncle and cousin, who came by to see Ben. And we went to bed on the early side, for us. Within a couple hours my phone was beeping, and in the dark I read a text from Ben, informing me that he had something bothering him, a pain in his eye.

I went into his room, and he was writhing and moaning. His eye was in excruciating pain and, when I looked at it with a flashlight, I saw it was very red and maybe there was some bump on the inside of his upper eyelid. I gave him eye drops and considered that in the morning we would somehow have to take him to an eye doctor or convince our family doctor back home to prescribe something over the phone. The thought of folding him back into the car was enough to set my heart to racing again.

I gave him his pain meds, more eye drops, and a cold compress on his eyes. He and I decided I should sleep with him (I gave Mark a break and let him have a much deserved night of nearly uninterrupted sleep) and so I moved my pillows in and got in next to him. I held his hand and he fell asleep quickly. I relaxed a bit and then forced myself to surrender, again, to the moment. The moment of deep night, darkness, and no answer to hold on to. I breathed in and out with intention. I relaxed my muscles and thought to myself: You cannot solve this now and so you must sleep.

Today he awoke with back pain but no eye pain. Today we will rest and then rest some more.

1 comment:

Susan said...

When you've held all that anxiety in for so long, letting it go takes time.

It ALL takes time. Healing on so many levels.

One day you'll wake up and realize Ben has no pain...and you have no fear. Won't that be lovely...