This stroke has undoubtedly changed my life. It affects every aspect of the way I live daily. I resent that many people I encounter automatically treat me as though my diagnosis defines me. Still others hear me talk about my goals and think I’m flatly delusional. It is truly difficult trying to navigate this world. I can only do what my body will allow me on any given day, but I am constantly pushing myself to do more. At the end of the day, it almost never feels like I am doing enough, but I can only continue my recovery by commanding my body to keep moving forward.
Every morning, life is more of a struggle than it should be. Most people only have to worry about putting their pants on one leg at a time; I have to manage this feat with one arm. I am limited as to which shoes I can put on to take Mary outside because I lack the dexterity in my left hand to tie a bow. Walking has become much easier, but it’s no simple task. Even talking can be frustrating because while my voice is much clearer than it used to be, it requires so much work.
It seems like a cruel joke for me to have to put forth so much effort with everything I do and still have it come out less than normal. If I could move and speak in ways that felt marginally normal, I wouldn’t care if the task drained all of my energy. It would be worth it to me. And while I know there are countless people who will protest that I am doing so well, their kind words are irrelevant. We’re talking about how I feel.
People often marvel at how motivated I am. They couldn’t fathom having the drive I have if they had suffered such a debilitating physical setback. While I can appreciate how they feel, it’s a rather simple equation for me: either stay active constantly or get stuck sitting around realizing how truly bleak things are. Working out is a refuge for me. Every second spent lifting weights or chatting with people in public is time that I’m not at home feeling depressed. Getting to the gym is the easy part. The hard times are when I’m alone at home.
The task with the lowest threshold that is physically challenging for me is probably speaking. It doesn’t require a great deal of energy, but it is arduous nonetheless. The first great hurdle to dating, for instance, is always talking on the phone. I never cared much for my phone voice before the stroke. It sounded dorky too me. Then the first woman I talked to after the stroke said that I sounded like I was developmentally disabled. I really appreciate her honesty, but the feeling upon hearing that is why I am so afraid of women or audiences hearing my voice.
To keep myself going, I try to constantly remind myself that there was a time when I couldn’t speak at all. I would know exactly what I wanted to say. I would even carefully form each syllable with my mouth. But when I attempted to produce sound, nothing would come out. Assuming that it was a matter of effort, I would push harder with my lungs. But try as I might, I couldn’t produce a sound. I cannot begin to express how frustrating this was. I would literally stay up most nights just trying with all of my might to speak. It was so lonely that it was terrifying.
I was overjoyed when they finally gave me an operation to help me speak again. I annoyed the speech therapist because I wouldn’t stop speaking. I was just so excited to have a voice again that it didn’t matter whether I was saying anything productive. I settled down enough to get through a brief speech therapy session, but if I wasn’t in a structured environment, I just talked and talked until my throat got tired.
The novelty of being able to speak faded as I started doing regular speech therapy. I went from a regular hospital to a rehabilitation hospital and finally to outpatient therapy. Speech therapy became more like work. I had to do tongue exercises, breathing exercises and more. I practiced reading aloud and repeating words. This is what really helped me to become critical of the quality of my speech. I began noticing that I had to take multiple breaths before I completed a sentence.
It was during this period that I began using my online dating profiles again. I was really only looking to have conversations, because I knew it would be a long time before I could go on dates again. Eventually I met someone who found out about my stroke, but who still wanted to talk. It was during our first conversation that I asked what she made of my voice. So when she admitted that she could tell something was wrong with me, she wasn’t speaking unsolicited.
Today when I get ready to speak to someone for the first time, it’s always a nerve wracking experience. In anticipation, I’ll place more phone calls than normal. I repeat a lot of my old speech therapy exercises. I even take minute video clips of me talking. I wish I had taken videos of myself speaking before the stroke. It would interesting to compare things like eye movement and mouth shape in addition to the sound. I’m never satisfied with the sound of my speech. But today it sounds a lot less labored, and I’m confident that someday people will just remark that I sound like a comic book geek again.
If people can get past the sound of my voice, I have cleared an important hurdle. Meeting me in person is extremely jarring. When I walk into a room, the first thing people notice is that I walk with a cane. The person has no idea which parts of my leg do or don’t work, nor if there is any plan to start walking without the cane at all. So I often feel like all someone sees is the cane. I remember when my leg didn’t work at all.
When I woke up in a hospital bed, my leg wouldn’t move. I had sensation in it, but all I could do was look at it. During the early days, all I could do was roll over to the side of the bed and place my feet on the floor. This was exhausting in and of itself. After a while, the therapists helped me to stand and to transfer to a wheelchair. My left leg was so weak that I was in constant fear of falling. If there hadn’t been two or three people holding me up at all times, I would have collapsed under my own body weight. When my sessions of sitting and standing were finally over, I would climb back beneath the covers and fall into a deep sleep.
On the day I was driven from the hospital to the rehabilitation hospital, the toes of my left foot were stuck pointing straight out. My dad had to force my shoe onto my foot. After he wheeled me to the car, I couldn’t even transfer safely. I more or less fell sideways into the passenger seat. When we arrived at the rehabilitation hospital, I almost fell while trying to transfer from the car to the wheelchair. After they got me upstairs, people had to wheel me to the bathroom and to the bed. Once everyone else had gone home for the night, I sat alone in the room and cried from fear. I felt so tiny, and everything in the room seemed so far away.
I had Saturday morning to do intake; I spent the afternoon worrying about whether I would ever be able to walk again. Sunday was a day off, so I had that day to ponder being in a wheelchair for the rest of my life. Monday was my first day of physical therapy. I woke u[ thinking about whether I could ever walk again, but soon staff had come in to help me dress and go to breakfast. After that, I was wheeled to one therapy after another. Over the next few weeks, I spent so much time going from therapy to therapy that I didn’t have time to dwell on my condition.
Now when people see me walking with a cane, I can show them pictures of when I was still in a wheelchair. I can tell them about the process of learning to walk again. I have video documentation of me taking my first steps and the year of practice before I moved back to Minnesota. After I moved back to Minnesota, I had to find a part time job and begin walking to different bus stops. I just didn’t have time to be burdened down with thoughts about my leg not fully functioning.
The one body part that never seems to get enough work is my left arm. Unlike my voice or my leg, I don’t get that much exercise in my arm from the business of going about my day. I have to actively do things such as stretching out my arm and hands. I do e-stim on my hand and walk Mary three times a day using my left arm. I have even begun holding onto the safety bar while riding the bus in an effort to keep my arm straight, because simply working my arm during two hours in the gym is nowhere near enough.
So if it seems like I have an amazing amount of drive and willpower, it is only because I need something to do to fill the hours. What appears to be a daily act of courage is actually a coping mechanism. I would be paralyzed with fear if I had to stop and take account of it all. I am lucky that I have the drive to keep powering through, though. It’s really just a matter of focusing on the increments of progress and not being obsessed with how the story will end.