Throughout most of my elementary school years, I grew up in a small town called Forest Lake, about 30 miles north of Minneapolis. Swimming lessons were an important part of all of our summers as children. But unlike today, where most swimming lessons are given in a pool, our location was a bit more primitive. Yep! You guessed it. We received our instruction in the lake, just off the downtown beach behind the roller skating rink and The Village restaurant. Even now, 35 years later, I can still feel the butterflies in my stomach that I experienced when I found out I had to jump off the raft in the deep end of the water in order to pass Advanced Beginners. Every time we swam out there, I wondered, “Will this be the day?” I was scared to no end.
It isn’t that I was a bad swimmer. In fact, I’ve always been really good at swimming. And I wasn’t bothered when we had to swim through the seaweed to get to the raft beyond the buoys indicating deeper water. But the thoughts of jumping into that seaweed, plunging into the depths of the lake and getting entangled to the point where I couldn’t emerge back out of the water? Plus, no one could see where I might be floundering because there was so much vegetation. I couldn’t voice it then, but now I know I was afraid of drowning. Had it been in a pool where I could clearly see what I was jumping into, it would have been a different story. Needless to say, on the last day of class, I finally confronted my fear head on and made the leap, passing the final test. However, the stress of that one event caused me to be sick to my stomach for weeks, in anticipation of what was to come.
The metaphor of swimming in the deep end has come to the forefront of my mind lately, due to my first full hour of physical therapy in the pool last Friday. While many of us are caught in life experiences where we are drowning, or at least feel we are, there are others of us who are treading water with the hopes that someone will come along to lead us to the point of safety where we can stand on our own two feet. With my disability, I’ve discovered even though I may do some flailing and am often just barely treading water in the deep end, I also know this place where we find ourselves in the water is all relative.
The truth is that I won’t die from my neurological movement disorder. Yes, the pain can be overbearing, with this year topping the charts. And I won’t deny there are times when I feel like I’m drowning, just like others living with chronic pain. I have been witness to people in my life who have suffered the loss of something they once had, either emotionally or physically, and have found themselves in between the points of treading water and drowning. The numbing of intense grief and physical pain through self-medication can be a common response. We’ve all heard the expression, “Drink away your sorrows.” The variety of addictions people succumb to is a whole different topic, though. Suffice it to say at this point in time, it has broken my heart to watch this happen and to feel completely helpless. For some, it feels like the pain will never end, and they’re just trying to survive every moment of every day.
When it comes to my own situation with my cervical dystonia, deep down, I know I can physically live with the pain. As a person who isn’t actually facing my own mortality, though, I can’t speak to how that would affect me emotionally, spiritually and physically. What I can speak to is how I feel as a part of the support systems of friends and family members who are, and it frustrates me to no end that my cervical dystonia interferes with my ability to physically be present to those whom I care about and need my support. The limited mobility due to my inability to drive very far has made me dependent on others. When your friends are spread throughout a metropolitan area, this doesn’t lend itself to an easy pick-up, especially when the drive is at least an hour outside of the city. And when you combine that with a strong desire to be respectful of the needs of the person who is suffering, in addition to their immediate family, it’s hard to know what to do. We are wired to want to help and to be present for others. Of course, I have sent texts, e-mails, pictures, and voice messages to make sure they know I care. As hard as it is for me to accept, I have to know that’s enough.
Last week, I found out that one of these dear friends, who was diagnosed with pancreatic cancer last fall, is going into hospice for his final days. This man is a pillar of strength, a big ball of fire who always lights up a room. You always know he’s there because he’s doing something, no matter how small it might seem, to bring you to your knees in laughter. None of us ever dreamed he would be the first of us to become diagnosed with a terminal disease. Just as the news of hospice care began to sink in, there was a message sent out by his family that we were invited to their home on Saturday to serenade him with a few Beatles’ tunes. Since I hadn’t seen him since his diagnosis, I was determined to go.
Our common friends had the same idea, to get me out there to see him. So we drove outside the city, weaving through the breathtaking countryside to create a beautiful memory out of a traumatic situation. Being able to be there, to hear his voice again, to watch him strum along on his guitar, to see his eyes light up as he looked out into the sea of friends and family who had made the drive too, to feel his hand, to give him a hug, and to look him in the eyes and tell him I love him…So many incredible gifts! While the emotional tide definitely rested between flailing about in the deep end and feeling like we were being pulled under, none of us wanted to show it. Why? Because we knew he didn’t want to see it, and we really did try our best on this sacred occasion.
The gift that will be carried on by his teenagers occurred during the period of time before and after everyone showed up for the sing-a-long. Whether a few of us were sitting with his son in the comfort of the Man Cave before the guest of honor was brought out to the patio, or afterwards as we were sitting around two tables we’d pushed together at the local bar and grill, everyone had a story to recount. I realized these stories were what we could give to one another to help us slowly move closer to the shallow end. Even the stories I’d witnessed first-hand were just as funny being shared via the oral tradition. Every single story made you laugh more than the one before. A story is a powerful form of therapy, and it will surely be something we continue to use for years to come.
The tale that still lingers in my mind involved a cowbell and a brick. An odd combination in anyone’s book! I heard the story several times that day, and it just kept getting better and better every time the senator (nicknamed that because of the power he has to get anyone to do pretty much anything) acted it out. Years ago, our friend sprang up on the stage in the Main Room at First Avenue with some other friends of ours. With a quick glance, he grabbed the first item he saw to assist him in playing the cowbell. Yep! That would be the brick. Having taken off his shirt after playing a gig next door in The Entry, he was now simply adorned in the overalls he is famous for wearing. And his white man afro. Lifting the cowbell and the brick above his head, he began to play along by hitting the cowbell with the brick. Being the strongest person by far out of all of us, it took a minute for it to sink in that the brick was heavier than he’d thought. But now, there was no turning back. He was fully committed, and sweat rained down on the stage as he concluded the song by finally becoming conscious of the fact that it was easier to hit the brick with the cowbell. I cannot do the end of this story justice, but know that I’m smiling as I write this because I can picture all the details of the story so clearly.
The moral of the story is that he always has to play along with any song, even if he isn’t in the band. On Saturday, when we were blessed to be with him while sixty voices were singing the likes of “Here Comes the Sun”, “All You Need is Love” and “Hey Jude”, he was still playing the guitar as it lay on his lap. And when he got tired, he used it as a drum. That’s our friend. Always needing to move. Always needing to play. Always making sure his friends are taken care of. And always keeping his head above water. If we’d been friends in my elementary years, I know he would’ve given me the strength to jump off the raft. And even if I chickened out, he still would’ve cheered me on. I’m a better person for knowing him. That’s one of the few things I can say with certainty about my life. We all are!