Released from Rehab: Realizations and Appreciations

I came home yesterday from the rehabilitation hospital where I spent 8 days after my release from the intensive care area of the neurological unit. Before surgery, I took some comfort in the idea that I knew what to expect when I woke up from anesthesia, but surprise, surprise, surprise... They have a whole 'nother row of rooms around the corner and down the hall from my old stomping (with a walker) grounds. I knew something was different because of the strange blue color scheme, the absence of tepid watercolor artwork on the walls, the presence of a lot more medical equipment, no private bathroom, and windows looking right out at the nurses' station. Also a lot more beeping noises, whirring noises, whooshing noises. A lot more attention, day and night. A lot more tubes, monitors, and observation of my body from machines and humans dressed in scrubs. More latex gloves.

Still, the increased scrutiny of the intensive care area was like a private retreat compared to the rehab hospital, where I had a roommate and where the nurses came in regularly to turn on the neon lights when they checked my vital signs, administered medications, and seemed a bit more eager to stick a suppository up my a** than I liked. For the first night, I had a bed alarm that shrieked when I moved, bringing running footsteps down the hall to see if I'd fallen out of bed. I was not permitted to go to the bathroom or shower alone. I had the most intense physical workup I've ever had.

After I was trained to use my wheelchair in physical therapy, I wheeled about the hallways and learned that I was in the Lock Down portion of the hospital. I had to work for several days to prove that I was cognitively adept enough to come and go. Eventually they figured out I wasn't a flight risk, and I began to have the run of the place; I could just wave down the hall to the nurses' desk and someone would let me out without coming to check my wristband and consult a list.

I went to my scheduled occupational and physical therapy sessions, and stayed for an extra hour when my strength and endurance allowed. I wheeled myself around the halls and graduated to a walker and then a cane. I sneaked into the bathroom when people weren't looking. The day before I left I finally got to sit in the shower all by myself.

I asked for early release because after being there for Christmas, I just didn't want to stay for New Year's Eve. I know the chances are slim that I'll attend a princess ball tomorrow night, but at least I might be able to get a midnight kiss from my sweetheart without feeling sneaky and guilty.

I was chastised for having a male guest lie in my bed with me; it is against policy, if the patient has a roommate, to lie in bed with a visitor (or presumably another patient). We had to take refuge in the cold, echoing hallways late at night, wheeling around and around, trying to find a comfortable place to whisper furtively. I couldn't sit up for more than a few minutes and there were no couches or lounges where patients could entertain visitors. So even the comforting touch and words of the man who loves me were circumscribed pleasures. There was a lonely sense of deprivation in that set of circumstances. Junior high dances and school field trips should have such effective chaperones.

Yesterday, I took a taxi home and showered in my own bathroom and crawled between the crisp, clean sheets of my own sweet broad bed. S came over to hold me and kiss my face in a way he hasn't been able to do in weeks. I cried with relief and appreciation for the small but priceless experiences of autonomy and human dignity that are sacrificed in the relentless quest to achieve the basic level of physical ability to be without 24-hour nursing and physical supervision.

It's a double-edged sword. Being presented with three square meals a day wheeled up to the bed, swallowing the pills brought to me every four hours relentlessly, people standing ready to prop me up or move me off the toilet or catch me if I fall, regular checks of pulse and blood pressure and heart and lungs and bowel function, supervised physical therapy, and exquisite attention to my physical safety were essential, I must concede.

I can hope (and I made a huge bet on this) that the benefits of home will have their own role in my healing. Long stretches of uninterrupted sleep; the privilege to use the toilet in privacy; having a nice long hot shower with my own fragrant soaps, lotions and balms; the comfort of my own jammies against my skin; being able to cry whenever I want, as loudly as I want, for as long as I want-- those have their place in this journey towards well-being. There is no room for that in the critical care wards. Enjoying the benefits of an adult romantic friendship without illicit feelings about accepting even non-sexual human touch is as vital as anything else, but its value can't be quantified and recorded in the medical charts.

In any case, I'm home now, but still require enough assistance that I may be carrying out many of my days in the homes of others until I can TRULY take care of myself. I don't know how often the home health team will be here to check on me, or when I will graduate to out-patient physical therapy. Not even the most seasoned physician can give me a timeline to predict when I will be able to stop taking medications that blur my concentration and make me have to decide if other nasty side effects are really worth putting up with in order to have pain relief. No one can tell me that I'll be granted permission to drive my own car in X days/weeks. No one can even make the foggiest guess about when I will be able to take up the duties of motherhood for two little kids.

The rehab center provided a mental health counselor as part of my treatment team. That was a good thing. He gives patients the tools to deal with the difficulties I've just barely begun to describe. Some of the residents of that hospital are counting their stay in terms of weeks and months instead of days. I'm one of the lucky ones.

My roommate cried when I said goodbye. She said I had inspired her and that she hopes her next roommate is half as nice as I have been. I cried when she said that, and bent awkwardly to give her a hug. Having been there for over a month, she has seen several people come and go, as she stays to carry out her valiant fight to recover. I was choked up as I tried to explain that SHE inspired me. I saw improvement in her condition over my 8 or 9 days there. She taught me that we must celebrate even the most minute improvements when we are this ill, this helpless. She showed me what courage looks like.

I weep to think of her there in that room, trying to maintain a positive attitude as she succumbs to the indignities of spilled bedpans and anxiety and having to be turned and medicated and cleaned and fed on a schedule by harried but caring nursing staff.

I am so glad to be free of the experiment in human indignity that is the hospital gown. I'm glad to look forward to beginning a new year from the vantage point of a couch or "real" bed instead of the mushy, narrow, bending hospital bed with its rails and buttons and sticky undersurfaces. I would like to dump that all-purpose hospital soap/shampoo/body wash down the sink so that in a few weeks or months I won't open a bottle to take a whiff that will lead instantaneously to the nauseating physical memories of the health care institutions.

I am challenged, even in the comfort of my home. Perhaps I had some unreasonable, subconscious expectation that when I got home, I would be BETTER. I have to remember the glory of the small daily improvements I'm making. I must not succumb to self-pity, at least not in the company of my friends and family. That would be too much for them to bear and it's quite pathetic and an antithesis of the healing I am striving for. I must leave the laundry to pile up, leave the dishes in the sink, leave things on the floor when I drop them, and be satisfied with giving them a little kick or poke with the cane to keep them from being tripping hazards.

I have to stand by helplessly if winter frost warnings are issued. I am as unable to help my garden even from here as I was in the hospital these cold weeks. I laughed with a friend yesterday that if the plants I lovingly planted can't hack it, then they can just give up and die. Nothing that isn't strong and hardy can stay around this household, for the time being. If I lose the plants that I spent all that money and energy on from planting to harvest, then I'll have to take solace in the memory of the pleasure I had at each moment when I was well enough to engage in the luxury of working in the garden. Only the persistent, tenacious and indefatigable may continue in my company until I can be well enough to tend to things weaker and more needy than myself. We're all in this together.

I am happy to report, after weeks of neglect, that my garden grows without me. Some of the plants are going to hold on, even thrive in these challenging desert conditions. I plan to do the same thing.