Day by Day: an extended stay
“So you’re gonna be institutionalized
You’ll come out brainwashed with bloodshot eyes
You won’t have any say
They’ll brainwash you until you see their way.”
In my life, I have spent very little time as a patient in the hospital. A car accident here, food poisoning there, etc. I spent a couple nights when my kids were born,sitting in an uncomfortable chair next to my wife plottin escape, but other than that, I’ve been pretty lucky.
Between the two hospitals, both MGH and Spaulding rehab, I ended up spending 27 days in the hospital. 27 days, almost an entire month, I could have never imagined being in one place or in this case two places for so long. It’s not like being imprisoned, people are nice to you, generally treat you with respect and don’t necessarily blame you for being there. However, there is a sense of confinement. You don’t really know for certain how long you’ll be there, even when they set a release date, Just the sense of having a release date makes you want to start writing on the wall.
Most of this essay will concern Spaulding Hospital, the time I spent at MGH was short but to be honest pretty traumatic, if in fact you can define a posttraumatic event as trauma. As I said before MGH was about getting me medically stable, patching me up so that I could start healing. Basically, just making sure I did not get worse. Also it was the darkest time, I was just really not sure what the hell was going on. My stroke was on a Wednesday, by Friday they began to wait for a spot at Spaulding to open so I could transfer. The aforementioned fall off the toilet and blackeye were among the low points of these days. The fall was entirely my fault and I then learned to listen but my anxiety for the next step in my journey increased. Generally, it is difficult to get a space in the rehab on a weekend, staff is smaller and it is more difficult to open a space. On Sunday, they told me I was getting transferred on Monday. I think it was the first time that I had any sense of optimism. Monday morning, I was transferred by ambulance to minimum-security, I mean Spaulding rehab.
Spaulding, as I’ve mentioned before, had much more humanity to it, to the point that you are actually greeted at the front desk even as being wheeled in on a gurney. The first thing most people noticed was the view of the Mystic River and Boston Harbor. I still felt like an object just being dumped from bed to bed. Slowly, my attitude began to change a bit, I realized that although this is a long journey, I turned a small corner.
You really start to think of the basic essentials of life, like eating. For the first 10 days, I didn’t have much of an appetite, which if you know me is a pretty strange concept. Looking back, I wish I had brought some hot sauce, most stroke patients are put on a low salt diet. I don’t tend to eat a lot of salt anyway but food is pretty bland. The vegetables are pretty good but I’m not sure how they made the chicken so rubbery. In fact, I googled” how to make chicken rubbery”, because in a lifetime of cooking professionally and at home I never did it. If you want to know, you do it by cooking at a high temperature for a long amount of time. When eating like everything else in a stroke, there is always a degree of difficulty. Eating in bed is not as fun as you might think, dropping food on your clothes just becomes an embarrassing fact as time goes on. For me because I passed the swallowing test, I could pretty much eat whatever I wanted albeit if it was from the hospital menu it was going to be low salt and generally low-fat and the portions were pretty damn small. Initially all I was really eating was small fruit cups and a little juice. It’s all I could really handle, there was no real physiological reason, no diagnosis, I just really had no desire to eat. That first Friday evening, even though I had no appetite, my friend Matt brought me pulled pork eggrolls from a bar called Ironsides and even though there was no appetite they were just too damn good not to eat. I’ll cover this later in these essays but that food from outside is going to be essential, cardiac diet be damned. None of the nurses had an issue with bringing outside food, generally they knew that happiness and strength were so important in the recovery that the occasional culinary foolishness fit into the entire program. Plus, if you had extra, staff seemed to always appreciate the offer even if they didn’t take you up on it.
Sleeping in a hospital sucks, I don’t ordinarily sleep well anyway but I got very little sleep in the hospital. At first I probably spent 90% of my time in bed, my advice is to get out of bed as soon as possible even though you will basically live in a wheelchair for a while. Becky brought me two nice pillows from home as I tend to be a pillow hoarder. Because you can’t move very well, you will probably be tucked in at night usually after nightly meds. There are some points in the hospital that I was going to bed at 730 after switching on the Sox. There’s just a lot of things you can’t do so you may as well go to sleep. The problem became even though I was taking trazodone for sleep, I would sometimes get up very early in the morning like 2:30 or 3:00 and not be able to get back to sleep and basically toss and turn until normal morning came. One night I woke up at 10:30 PM thinking it was time to get up. Even though I had a window and beautiful view of sunrises and sunsets it really didn’t matter to me, time of day was irrelevant unless I had a therapy appointment. Not to go all Foucault on you, but there is a certain life philosophy that comes with incarceration even when it is meant in your best interest.
To be clear, hospitalization is not prison there is no intentional punitive factor to it. Even at Spaulding with a great deal of personalization and love, odd things happen. Things that just wouldn’t happen in the outside world, for example there was this one woman I called the ass lady, she appeared to be the woman at the hospital that was in charge of bedsores (I can’t remember the technical name). Somewhat irregularly, I don’t know her schedule, she would come and check your body for sores. She noticed a small abrasion at the top of my butt crack and instructed me in care for said butt crack. I told her not to worry and thought that I may have come in with that, she was the only one in the hospital who actually seemed to yell at me for something. I fear the ass lady’s visits in the same way you would fear a high school assistant principal. You knew you were in trouble for something.
Outside of being in bed you likely will spend much of your day in a wheelchair as it is the easiest way to get your around from therapy to therapy, to the restroom and if you’re just hanging out. Being in a wheelchair isn’t super comfortable, you always feel like they’re in transition kind of like sitting on a bus, it’s not terrible but you know you’re on to something else later and the dude next to you is looking at porn on his phone. Not really, but work with me here. You are usually whisked for appointment to appointment at the by the therapists or by aides. You sit here while you eat lunch or supper or just hanging out. I chose not to watch any TV other than sports. Daytime TV is a desert. I have a particular hate for wheel of fortune, the man next to me played wheel fortune on a very high volume and I literally felt sick to my stomach. Mostly I communicated to the world through Facebook, reddit, twitter, and other social media as well as texting during my down times along with the occasional podcast. I found my phone and iPad to be invaluable during my stay.
I’m going to get into the visitor thing a little later in a separate post but just to say your visits are crucial, particularly from my children as I was feeling pretty shitty as a dad. I treasured every person who came to visit me and was extremely blessed with many visitors from family, friends, colleagues, my church family and others who spent their time driving up and paying to park to spend a little time with me. If you are a friend or family of a stroke patient keep the visits up. Honestly sometimes I was so tired I wasn’t really a good host and at about 7:00 PM I would start to fade. I can’t say enough about all my visitors those that brought me meals, gifts, but mostly those that brought me joy. My colleagues from work would keep me up-to-date on the day-to-day and ensure me that my work was being taken care of which was very important to me. Intellectual stimulation is an important part of stroke recovery. As a visitor usually it is a bad idea to talk to a patient like they are child, for those of us with physical weakness, our minds are still sharp even if our reaction mostly due to being tired may be as little slower than usual. For younger patients, I guess I consider myself young, much of our social interactions that are not with staff are with people that are considerably older than us. We look forward to our visits with peers and normal conversations about the outside world, particularly when we are sharing meals, eating alone sometimes makes you feel like a loser.
Is a few days went on in the hospital, I started to break the world of the institution into two groups; crips and norms. Crips were my people, people who had suffered strokes and had visible disabilities to them. Norms could be a lot of different people. Certainly it was staff but mostly it was visitors, outsiders and early on before I realized the idea of cognitive disabilities and stroke, people who could just amble into a meeting without assistance. In some cases, it was difficult to ascertain if people were crips or norms but I have to admit I was jealous of the norms, people could just get up go about their business without any restriction. I think to this day I still harbor some jealousy as I watch other parents at the soccer game jog, run and jump around as they watch the children.
In the next chapter, I’m going to try to discuss the idea of a positive attitude. During your stay, this is the most essential thing, I met several patients who are angry, even spiteful and you knew their road was a lot longer than yours was. In groups, I spent most of my time joking around, flirting with the old ladies and chumming around with the older guys. Why the fuck not, you got a choice in this, you can be a miserable bastard or you can move towards that light at the end of the tunnel.