When I started writing this blog, I wanted to tell you about my life and progress after my stroke. However, I also wanted to give backstory which would help the reader understand how I came to this point. Nonetheless, my life has continued to move forward while I’ve been writing about the past. Therefore, starting with this post, I will begin splitting the contents of my blogposts. Half will continue to be the story of my initial recovery; the other half will be about what I am currently doing to keep my life moving forward. My hope is that this will not only inform people about the unique details of my story, but it will also serve as inspiration for what can happen moving forward after coming back from the brink of death
During the first few weeks after I came out of the coma, I was very disoriented. Although I could verbally interact with other people, I had a hard time connecting to where I was spatially. I can only describe what I mean as being in a sort of dream state. Some nights, I would think I was going to a steamy room where the hospital did its laundry. Other times, I would imagine myself moving through the building at night. During others, I would think that I was trying to move between two levels of a bunk bed. However, during the entire time, I was confined to a bed.
This generally was the way it was while I was at Select. After I go to Methodist, I became more aware of what my body was actually doing. Instead of fantasizing about nighttime escapades, I was aware that I was in bed, working out in the gym, or transferring to a wheelchair. And once I began working out in earnest, I became more aware of what was going on around me. Often I would fall or bump into things, and it would happen so fast that I would look up, not knowing how it had happened. But I was aware that it was my body participating in real actions.
Exercising was difficult and very exhausting, but was something I looked forward to each day. It had been painful when I first started. But while there was still some pain in my shoulder and hand, that was only in my affected arm. It wasn’t like the days immediately following my coma, when everything had atrophied and my entire hurt. Now I enjoyed ending the day sweaty and panting. It meant that I was getting back to normal.
However, I was still feeling very isolated. People like my family or my friend Val would come to see me. But other than those brief moments of joy, I felt very much shut off from the isolated world. I have always been an exceedingly social person, so this was harder for me than it would have been for the average person. One way I combatted this was by talking more. At the time, my lungs were very weak, and my speech was labored, due to the lack of breath support. Although I had suffered asthma since birth, it wasn’t until after the stroke that I knew what the proverbial “elephant on your chest’ sensation was like. Each time I tried to speak, I could feel intense pressure in my lungs. As a result, I would not speak much when I was not prompted to do so.
Not wanting to be alone meant that I would have to change this behavior. While at Methodist, I began to laugh and talk with the staff much more intentionally. Since they were the people around me most of the time, they were the most convenient social outlets. Moreover, I realized that friendly patients will often have a better care experience than cranky patients or patients who do not stand out. It’s not that care providers are out to give people bad care, it’s just that they are human beings who also have bad days, experience long weeks, and go through burnout. If I could say things to lighten the mood, it would make the person helping me feel more energized.
I don’t mean to give the false impression that I was always pleasant. There were times when I was irritable, frustrated, or argumentative. There were several occasions when I was stubborn just for the sake of being stubborn. But overall, if I wasn’t being moody that day, I tried to maintain a good demeanor. In fact, even if I was in a foul mood, it seldom lasted for more than an hour.
My friends had begun writing to me while I was in the coma, and every week my dad would bring card and letters from my friends all over the country. Heretofore, I had felt as though my suffering was a very private affair. The rest of the world must have been going on without me. These correspondences let me know that people actually cared and were concerned about me. I wondered how so many people had even discovered my plight, since I wasn’t on Facebook and hadn’t called or texted to anyone.
There were so many cards from people who had never met me, and I found it befuddling that they had found my address. Others were people I had known personally but hadn’t seen for years. Some lived on the Gulf Coast; many lived in Minnesota and Wisconsin; several lived scattered around the country; but almost none of them lived in Jackson. We placed them in a large wicker basket. Had my vision been good, I would have read through them repeatedly each night. But I had to rely on my dad’s eyesight.
Then one day I realized that my vision had gradually begun to get better. Where before I could only read around one screen of computer text or half a page, I was now able to read for longer intervals. Additionally, where reading off of a smaller screen had been even more tedious, I could now even manage that for short periods. I began asking Dad to bring my phone every other day so I could read Facebook. I was not up to the task of typing yet, but at least I could read what people were saying about me.
After a week or two, I had grown eager to finally talk to someone over the phone. I knew that my voice might be terribly difficult to understand, as I often had to repeat myself in public. Nonetheless, I wanted someone in a different state to hear the sound of my voice. So I called my friend Allene, one of my oldest and dearest friends one Thursday. She was the one who had set up my Gofundme account, and she was the one who had given out my address and kept everyone abreast of my progress.
To my surprise, she had no surprise understanding me. She said, “I didn’t know if I was doing enough.”
“You did more than enough. You kept everyone informed. Plus you helped with starting the Gofundme account.”
“I wanted to donate more, but I couldn’t.”
“No, really. I’m really just amazed.”
“Most people gave around fifty to a hundred bucks. Your friend, A gave the most. I don’t know who that is, but he gave two hundred.”
“He played safety at the U. I used to call him the ‘Hindu Hitman.”
We talked for a time longer, then she asked, “Do you need me to come down there?”
“I don’t know. I just wanted to see if I could help. I’ve been doing nothing but sending out résumés, but
I haven’t found a job yet.”
“You just finished nursing school. You need to focus on finding a job.”
“But I know I could do something.”
“You don’t know anything about Mississippi. Plus, I’m in the hospital right now. I have a hundred people taking care of everything I need. Trust me everything is being handled.”
“I knew Mississippi has problems with racism and health care. It never really hit me until I realized that it was you who might not be getting good care. Then I just got scared.”
“I understand that. But I was in a coma before. That was definitely a time to panic. But I’m awake now, and can speak again. So I can advocate for myself now.”
Allene is a worrier. That’s what she does. She’s also the type who wants to take care of everybody in the universe before dealing with herself. It took some amount of cajoling and some amount of joking just so she could see that I was safely back to my normal self. But eventually she stopped being as worried, and she felt okay with not coming down.
After that conversation, I began trying to have one each night. One was with my old teammate and friend, Amir. He had moved to California to pursue a career in acting a few years earlier, but the vast majority of friends whom I hadn’t met through adult league soccer were people I’d met through him. I can’t remember what we talked about, but I do know that afterward, Allene told me that he seemed overjoyed, and that she was really happy I had called him.
On another occasion, I talked with a childhood friend named Kimberly. She was from a family that had attended my church when I was a child. Like a third of our congregation, their family was from the North. These families come down to Mississippi to provide education, health care, other types of expertise, or even labor in the poor communities. It was a multiracial congregation whose social mission was known by the term, “racial reconciliation.” Kimberly’s family was from Minnesota. My father had helped her father to score a job as an adjunct professor at Jackson State University, where my dad had tenure. All this was unbeknown to me at the time I was a child. I didn’t find that out until Kimberly and I reconnected years later.
Kimberly and I had a long conversation that was filled with nostalgia and hope. I told her all the details of my stroke and recovery. It was easy talking to her, because she had also just completed nursing school. My family was really caring, but I was talking with someone who already knew the process and the vocabulary whenever I spoke with her or Allene. Given that speaking took so much effort in general, it was just so much easier when I could just have a conversation without having to describe each procedure or define what every medical term meant.
The following week I decided to go back on Facebook. Several of the letters I had received were from my Mississippi atheist group. During the first week after I had emerged from the coma, I had gone through a state where I was not sure what was real and what was a dream. And as such, I would try not to wake up. I would shut my eyes tight and try not to let the people in the real world know that I was awake. I just had a vague fear that something bad would happen if I didn’t wake up properly. Well during that time, my father would read to me. At times, he would read his articles from his weekly column in the Jackson Advocate – the local African American community newspaper. Sometimes he would read things that he had brought from my bookshelf at home. Still other times, he would simply bring letters I’d received. The way I knew that I was not dreaming was when I began hearing poems that could only be from Neruda’s Heights of Machu Picchu. Then I started hearing the names of members from the atheist group. The poetry collection was obscure, and the atheist group was secret. I realized my father could not be making any of this up.
In retrospect, that could have simply been part of another elaborate dream. But it was enough to make me want to wake up and start interacting with the world again. I wanted to get back in touch with everyone – specifically with the Mississippi atheists – to tell them that I was alive, and that nothing of my personality had been altered.
My intent had been to start telling you about my current life. But there is so much backstory to write about, that it’s easy to get carried away. I am already exceeding my weekly word count.