Back from the Hospital, Redux

I had to go back to the hospital on the Saturday after seeing my neurosurgeon and physician's assistant. I called in the morning; luckily my own doctor was on call and he responded quickly and told me to go to the ER so I could get admitted.

My dear friend Bob drove me to the hospital, fetched a wheel chair and wheeled me right to triage and right into my own little cubicle. Another catheter was inserted, another IV pricked into a vein, then a lovely intravenous dose of dilotid was administered. I was blessed with Bob's always patient, always present company through what must have been hours before I was wheeled up on my stretcher to a hospital room on the same old ward. My nurses from the last four admissions to the neuro ward looked up in sympathy and familiarity. I have friends there now.

Bob stayed with me long after I was settled into my room. He returned several times with lilies, my favorite flowers. He was there when the red second hand on the wall clock suddenly sped up and made an hour pass in about a minute. My favorite nurse, George from Kenya, had to reset it later that night. So when I tell the story and people say, "Those must have been good drugs," I protest that I have two sober witnesses to an event that brought blessed surprise and laughter to a long stretch of time when I was in such agony I speculated about ending it all.

Finally I got an MRI to prove that something was, indeed, wrong-- along with an "incidental finding" that I have a huge cyst on my right ovary. "Oh, that will just involve an outpatient procedure," the physician's assistant assured me. My neurosurgeon said it had nothing to do with my pain.

It took a hissy fit to initiate the process that brought the pain specialists in to interview me. They concocted a recipe of pain medications to help me "break the pain cycle."

I went home with two kinds of morphine, a drug called Neurontin that targets nerve pain, Percocet and a renewed prescription to valium. I had to stop the intravenous doses of Teredol because the maximum amount of time any person can take that miraculous drug is five days.

My friend Stuart came every day to visit me and hold my hand. He lent me his Ipod, loaded with music to help the moments pass with some kind of coherence of time; each song represented a solid, measurable stretch of time that I could not otherwise perceive.

This time I didn't even bring a pen or paper or my own music or a book or anything but the barest essentials. Not just because of the excruciating pain, since Bob was there to help me pack for the journey, but because I sensed this was a revisitation of the spiritual retreat into pain and illness.

Indeed, I entered a different dimension while in the hospital. Some may scoff and attribute that to the drugs, but I insist that it is much more than that. My experience with chronic pain over the last four or five years, the frustration with being patronized by medical professionals before finally being taken seriously and discovering that I had a very severe condition, the repeated hospitalizations, the emotional component of exploring my limitations, my sense of helplessness... all of these contribute to my new understanding of-- what? Life? Compassion? True Grit? The power of the present moment? Letting go? Acceptance? I'm not sure yet what all of this will distill into. For now, it's gratitude for my friends and family and all the people who care for me and offer whatever support they can provide. And gratitude to be alive, even in this sometimes hellish existence. Every moment of humor and tenderness and human connection, every moment with my children, is so acute that it hurts in a good way.

Today while talking to Stuart, I said that I can't afford to pay someone to do all that I used to do when I was well or even semi-well. And that is just to run my household and provide care for my children, much less work to earn that money to pay my helpers. I don't know what is going to happen next, as my financial resources are drained by medical bills, child care, household help, assistance for me as I recover from this latest incident, groceries, and all that stuff.

I'm grateful that I invested in solar energy and water harvesting when I did. I'm grateful for the small efforts I made with my pick and shovel a few months ago to redirect run-off to make better use of rainfall. Yesterday there was a tremendous rainstorm, and I looked out the windows and thought, somewhat gloomily, that if I was well I'd be out there with a raincoat and a hat and my shovel, letting the water help show me the paths to create for it to stay on my property and water my vegetation or even create little recharge pits to collect the water and keep it in the ground. But I was helpless; I used my walker to move from one window to the next and decided to simply enjoy the rain, knowing that I had at least done SOMETHING.

Someone involved with one of my jobs emailed me today to say, "I'm so glad to hear that you're doing better." Then she started inquiring about all this work she wants me to do. I wanted to ask, "From whom did you hear that I'm doing so much better?" Someone is vastly uninformed, if she's hearing that. Just because I finally mustered enough energy to answer weeks' worth of emails doesn't mean I'm better. It was my ONE THING for the day before I had to go back to bed. Only I'd visited with my kids for four hours, with help, and later I spent a lot of time catching up on all the bills that have collected while I've been too ill to address them. So I guess I did THREE THINGS and I'm paying the price a day later.

The only reason I can write in this blog is because the pain medications keep me awake. I'm lying on my back on an icepack and I can type and my writing addiction has taken over. I haven't written in my journal, I haven't read the latest Harry Potter book that my friend Heather brought to me in the hospital, I haven't watched the two Netflix movies that have been sitting here for over a month because I don't have the attention for them.

I suppose in some sense I'm doing better, but it's hard to believe that from where I stand-- or more accurately, lie.

So this is the gloomy update. Someday I hope to be able to articulate the gems of wisdom I am unearthing as I go through this experience. But now I'm just face down in the mud.