Now that I was back on Facebook with the Mississippi atheist group, I decided to get more active my Facebook community. I had been sporadically reading my friends’posts, and I knew that they were worried sick about me. I was also cognizant of the fact that they had raised thousands of dollars for me by setting up a Gofundme account. I wanted to put their fears to rest and to thank them for their generosity. So, I posted a brief status update, telling them that I was alive and well, and that I was thankful for how much they were doing to help me get through the most dire situation of my life.
It is difficult for me to overstate their reaction. My first few status updates were deluged with comments. Scores of people wrote back telling me how frightened they had been, and how thrilled they now were to know that I was alive, moving forward, and in good spirits. I also began receiving many friend requests. Some were from people who had unfriended me during my coma. I am completely sympathetic to those who felt it necessary to make this decision. They had received horrible news, and they did not want to be there to hear it when my status became fatal. So they disengaged and waited to hear the news from others. The other category was comprised of people who were more peripheral coworkers and acquaintances. These were people who had heard about my travail, and who wanted to form a stronger bond now that I was recovering and communicating.
I welcomed all who wanted to be friends, as it meant feeling lonely no longer. In addition to my Facebook interactions, I was now calling and texting people regularly. I went from being bored all night after finishing therapy for the day, to communicating between sessions and until midnight. I was hundreds of miles from most of my friends, but the daily interaction through digital communication made it feel more like I was just working in a remote environment.
The days were becoming easier now. I was able to see the gains in therapy and I was able to put forth increasing amounts of effort. One day, I came back to my room so I could pee. When the nurse came in to hold the urinal, I was excited that I would finally be urinating voluntarily. However, I strained for almost ten minutes. As usual, nothing came out. I became quite disheartened.
Since I had about thirty minutes until lunchtime, I decided to hang out in my room. I turned on the television and took out my phone to use Facebook. After a few minutes, my body began to signal that I would soon have to pee. I didn’t have time to call and wait for a nurse again. So I grabbed the urinal from my bed, stood up, and opened my pants. I jammed my penis into the urinal just in time. When I was finished, l felt truly accomplished! No longer would I have to wait until my body suddenly wanted to urinate. I was in control.
One late July afternoon, the nurse practitioner came to my room and announced that they were about to remove my feeding tube. I had not eaten through the tube in well over a week. But they had left it in as an annoying precaution. It got in the way when I was dressing; I had to cover it when I showered; it dictated how much I could roll over in bed. At this juncture, it served no purpose but to restrict my movement.
I had not been awake when the tube was placed into my abdomen. Since an operation had been required to insert it, I assumed that she was going to take me to another surgery. Instead, she told me that she was going to pull it out herself. Now I assumed that there must be some sort of screw or spring release mechanism that would allow her to safely remove the tube from my stomach. She handed me a small towel and asked me to press it against the site of the tube. I pressed the towel around the tube. Then she simply yanked it out. I heard a dull popping sound, and the tube was out.
“Hold the towel against your stomach so it doesn’t bleed.”
“How long am I supposed to keep it on there for?”
“About thirty minutes.”
I was astonished. Here I thought I was about to undergo a delicate medical procedure, when all that was required to remove the tube was brute force. I pulled the towel away because I was curious about what the wound looked like. It was a rather small slit. And the flesh that was exposed from it rolled back in a way that reminded me of a thin pair of lips. I quickly jammed the towel against it, so the blood wouldn’t run. Rather than just leave it there for the prescribed time period and risk any sort of complication, I held the towel against my side for over an hour. Just as she had said, the wound had stopped bleeding. And though it did leave a small scar, the wound has never caused me a single problem.
Almost every aspect of my recovery seem to be moving along now. I was moving my left arm and left leg a bit more each week. Speaking – while quite difficult – was manageable. I was able to eat without choking; I just had to take smaller bites and chew more. I was also getting over my incontinence. The big thing that bothered me was the fact that I still had not regained the ability to walk. Often I would lie awake at night, imagining that I would have to use a wheelchair for the rest of my life. Many days, I would go back to my room after therapy. In solitude, I would practice trying to lift my leg as high as I could repeatedly. I even remember watching a toddler in the gym with her family. She was hopping around and throwing her hand in the air. It made me insanely jealous. I kept telling myself, Even she can walk! I hoped that it was only a matter of time before I would be able walk too. But I did not have process and timetable. And that was frightening.
To compound my worries, my neurologist came in one Thursday and told me that tomorrow I would reach the end of the four weeks I was authorized to be in the rehabilitation hospital. I was terrified. I had assured him that I would be able to walk when it was time to leave the hospital. Did this mean that I would be confined to a wheelchair forever? He then asked me if I would be willing to have him call the insurance company to authorize one more week’s stay. Of course I said yes. I waited for the next three days, wondering if they would have to kick me out. But on Monday, they came to my room to get me dressed for therapy, the same as always.
That Thursday I had a 2:00 physical therapy session with Andrew. We went through two exercises. Then he had me practice going up and down the mock staircase. Finally, he announced that I was going to try walking. I was nervous but very excited. He wheeled me out the door of the gym into a hallway, then put a gait belt on me, so he could support my weight if I collapse.
“Okay. Go ahead and stand up.”
I rocked forward and tried to stand. I pushed through my right forearm, and as I rose, I could feel my legs shaking beneath me. After a few seconds, I plopped back down in the chair.
“Okay. Rest a second, and we’ll try it again.”
I sat for a couple of minutes, trying to catch my breath. Then I tried standing again. My legs felt just as shaky, but this time, there was enough strength in them to complete a full stand.
“Good job! Now grab that handrail and rest for a second.”I was feeling very confident. Although I hadn’t taken one step, I felt like I was on my way. “Okay. I think I’m ready.”
“Alright. Take really small steps, and we’re gone go real slow. Okay?”
I took a step with my right foot. Then I swung my left leg forward and placed my right foot besides it. It was tiny, but it was my first experience with walking again. With each step, my left foot would also deviate out to the side, and my toe would also strike the floor. My posture was also very stooped, with my legs spread too far apart. Instinctively, my body was trying to balance itself, and it was overcompensating to keep from falling down. It wasn’t attractive or efficient, but I was moving under my own power at last. Eventually, I wouldn’t need a wheelchair.
* * *
Two years later, I was back in Mississippi. I would be visiting friends and family for five weeks. On my first full day back, I was due to go out to lunch with my friends Dale and Kim. I had met them soon after I was released from the hospital in August of 2015. Dale constantly has to travel to California to ship out to the Far East with the Merchant Marines. So it was just lucky that he was stateside while I was in town. Kim, his wife, is the president of the Mississippi Humanist Association.
We went to a new restaurant in Fondren, a trendy neighborhood in Jackson and a popular location for new restaurants. We talked about social problems facing Jackson, and how to institute economic change. The topic of the Jackson Zoo came up. About half of the exhibits are closed, and the grounds are in a bad state of disrepair. Because Dale didn’t grow up in Jackson, Kim and I began telling him about what it was like in the Eighties when the miniature railroad known as the Chimneyville Choo Choo ran around a pond, and there were well-manicured recreation areas. In those days, going to the zoo was an all-day affair, because the zoo was, in essence, a city park with many different things to do. Now, much of the city’s tax base had eroded and the place felt sort of depressing.
We discussed their various ideas about how to revitalize West Jackson. Dale thought that cleaning up the zoo and building modern, low-income housing that residents could rent to own could give people pride at having a stake in their community. Kim focused more on how to change the negative stereotypes about non-religious people by having members of the MHA take on more vocal roles and volunteer even more in the area than the group already does. I must admit, like many citizens who have moved away, I have a tendency to speak about Jackson as though it is dying. It is vital to meet with people like this regularly and hear of the ways in which they are fighting to see our city live.
On my second day in town, Sunday I had dinner with a friend from a Facebook group, Amy. She blogs and helps others with blogging. I had been mulling over the idea of starting a blog of my own. Knowing that I would be home and away from distractions for five weeks, I felt like it would be the perfect time to begin developing what would become post-stroke-life.com.
We ate at a seafood restaurant, where we caught up socially. I told her about my struggles and successes during my first year back in Minneapolis. Then we moved on to discussing the nuts and bolts of how to build a blog. I don’t have a strong technical background, so she had to educate me on everything. What exactly is web hosting? How do I acquire a domain name? Do I need to copyright the name in case I want to eventually add merchandise to the site?
As much as an amateur as I was, and as silly as the questions seemed to me, Amy was patient and full of information. Two days after I left our meeting, I called Godaddy and registered the site name. Now I could spend the rest of my vacation meeting people, reminiscing, and documenting it all in pictures, words, and videos. After I returned to Minneapolis, I could begin the task of publishing my journey.