The light we carry

  When I was a kid, it occurred to me one day that my dad started using a cane to help me balance while I was walking. I can’t remember exactly when it showed up at our home on Chicago’s South Side—I was four or five years old, and suddenly, there it was, a smooth black wood cane, slender and strong. It was an early result of multiple sclerosis, which left my dad with a severe limp in his left leg. Slowly and silently, it erodes his central nervous system and weakens the strength of his legs. The disease had likely been taking its toll on Dad long before his diagnosis, in the days when he was commuting to work at the water treatment plant in the city, running the household with Mom, and trying to raise his kids. That cane helped my dad go up the stairs to the house and down the stairs to the city blocks. In the evening, he would lean his cane on the armrest of the recliner, watch sports on TV, listen to jazz on the stereo, hold me on his lap and ask what happened at school during the day, seemingly forgetting the existence of the cane. I like that cane. Its curved handle, black rubber head, and the crisp sound of “clang” when it falls to the ground all fascinate me. Sometimes I’d lean on it, imitating Dad’s posture, and limping around the living room, hoping to experience for myself what he felt when he walked. But I was too young and the cane was too big, so I tried to use it in the “play house” game as a stage prop.
  In my family’s opinion, the cane has little symbolic meaning. It is just a tool, just like mother’s spatula is a kitchen tool, and grandfather’s hammer is a repair tool. When a shelf or curtain rod is broken at home, grandpa always uses a hammer to repair it. It’s functional, it’s protective, it’s something to lean on when you need it, that’s all.
  What we really don’t want to admit is that Dad’s health is getting worse and there’s a silent battle going on inside him. Dad knew this, Mom knew it, and my brother Craig and I knew it. Although we were young, and although Dad could still play handball with us in the backyard, come to our piano recitals, and watch Little League games, kids were not stupid, and we began to understand that Dad’s illness would Our family has become more vulnerable and vulnerable. In an emergency, it was difficult for him to move quickly and save us from fire or break-ins. We slowly learn that life is out of our control.
  Sometimes the cane was unreliable, too. Dad would suddenly fall if he missed a step or if he tripped over a bump in the carpet. In that frozen moment, his body hangs in the air, and everything we don’t want to see is in front of us—his fragility, our helplessness, uncertainty, and even more difficult days ahead.
  The thunderous sound of a grown man falling to the ground is something you’ll never forget. It shook my small apartment like an earthquake and we all rushed to him. “Fraser, watch out!” my mom would say, as if that could undo what had just happened. Craig and I would use our little bodies to help Dad get up, and then quickly retrieve the cane and glasses that flew out, as if the speed with which we lifted him could erase what had just happened, as if We can solve all problems. These moments always make me worry and fear, especially thinking about the loss we may have to suffer, and how easy it is to actually happen.
  Dad would often laugh it off, act nonchalant, and signal that we could smile and joke. Our family seems to have a tacit understanding that these moments are to be deliberately forgotten. Laughter is another useful tool in our house.
  Growing up, I learned that multiple sclerosis affects millions of people around the world. The way the condition messes with the immune system is that it attacks from within the body, causing the immune system to mistake “friends” for “enemies” and itself to be “outsiders.” It disrupts the central nervous system, destroying the protective covering of nerve fibers called axons, leaving the delicate fibers exposed. Dad never talked about the physical pain MS was taking on him, and he was rarely depressed by his limited mobility. I don’t know if he fell when we weren’t around him, like at the water treatment plant, or on the way to and from the barber shop. I must have fallen, at least once in a while. However, many years passed like this, and Dad went to work as usual and came home as usual, with a smile on his face all the time. Maybe this is a way of resistance, maybe this is the code of life he chooses to live by. You fall, you get up, and you move on.
  Now I realize that my dad’s disability taught me an important life lesson early on about what it’s like to be an alternative—to live with some imprint on the world that you can’t control. Even if we don’t think about it all the time, the feeling of being different is always there. Our whole family carries this offbeat imprint. We worry about things that other families don’t. We need to pay attention where others don’t. On our way out, we would silently take stock of the obstacles in our path and figure out how we could save Dad the effort to cross the parking lot or get to his seat at a Craigs basketball game. The angles from which we measure distance and altitude are different. We see stairs, icy sidewalks, tall curbs differently. Our criteria for evaluating parks and museums is whether there are many benches there, and whether a tired body can rest at any time. Wherever we went, we weighed the risks and looked for ways to increase Dad’s efficiency, even by a small amount. Every step we take has to be calculated.
  One tool was not working well, and its effectiveness could not keep up with the development of Dad’s disease, so we went out to find another tool for him. And just like that, the cane was replaced by a cane, the cane was replaced by an automatic wheelchair, and finally a small motor vehicle specially modified with joysticks and hydraulics to help compensate for what his body couldn’t do. Does Dad like these tools, or think they will solve all his problems? of course not. But does he need them? Yes, absolutely. That’s the value of tools. They help us stand up, stay balanced, and be better able to live with uncertainty. They help us cope with change and keep us going when life feels out of control. Even when we’re not feeling well, even when our “nerve fibers” are exposed, they help us keep going.
  I think a lot about these issues: What are we burdened with? What keeps us strong in the face of uncertainty, especially in times of chaos?
  How do we find and rely on our tools? I’m struck by the fact that so many of us struggle with feelings of otherness, and that our perceptions of it are still at the heart of wider conversations about what kind of world we want to live in, who we trust and who we entrust Lift, and who is left behind.
  These are of course complex questions, with complex answers. “Alternative” can be defined in many ways, but I will say a word for those who feel alternative: It is not easy to make your own way in a world full of obstacles that others cannot see or do not see . If you are a different person, you will feel that you are using a different map and encounter different obstacles on the road than the people around you. Sometimes, you feel like you don’t have a map at all. Your difference often enters the room before you, and people see it before they see you. This also leaves you with a task to “overcome”. And “overcome”, just the word itself, is exhausting.

  In the end, but also out of survival, you learned to pay attention, just like our family. You will think about how to save energy and calculate every step you take. At the center of it all is a dizzying paradox: Alternative makes you prudish and at the same time requires you to be brave…
  I’m often asked to answer questions and offer solutions. People ask me if I have somewhere in my pocket a solution to these problems that will cut through the mess and make it easier to “get over”. Believe me, I know how effective that approach can be, and I am willing to offer a series of clear, focused steps to help you overcome every uncertainty and accelerate your climb to the high ground you hope to reach. I wish it was that simple. If I had such a secret plan, I would hand it over right away. But remember, I lay in bed at night and sometimes wondered if I was good enough. You must know that I have problems to “get over” like everyone else. So, what about those high grounds that countless people regard as the goal of striving?
  I have been to several so-called “highlands” today. Believe it or not, I will tell you that doubts, uncertainties, and injustices still exist in those places. In fact, that is the fertile ground for them to grow. What I am trying to say is that there is no secret formula. There are no wizards behind the curtain. I don’t believe in coherent solutions and succinct answers to life’s big questions, because that goes against the very nature of human experience. Our minds are too complicated and our histories too chaotic.
  What I can do is, let you take a look at my personal “toolbox”. This book is all about showing you what I keep in my toolbox and why. What tools do I use in my work and personal life to help me stay grounded and confident, and what tools keep me going even during times of high anxiety and stress. Some of my tools are habits and practices, others are tangible objects, and others are attitudes and beliefs born out of personal history and experience as I continue to “become”. I do not intend this book to be a practical guide. What you’ll see in it, I hope, is my honest reflection on what life has taught me so far, what kind of “joysticks” and “hydraulics” I’ve used to get me through. I’ll introduce you to some of the people who have helped me stay on my feet and share life lessons I’ve learned from some amazing women in the face of injustice and uncertainty. You’ll hear that I still get knocked down by things sometimes and I get back on my feet. I’ll also tell you what attitudes I’ve gradually let go of to understand that tools are different from defenses and much more useful than defenses. It goes without saying that there is no one tool that works for all situations and for all people. The tools that are reliable for you may not be so effective in the hands of your boss, mother or partner. A spatula won’t help you replace a blown tire, and a tire crowbar won’t help you make an omelette. (But of course, feel free to prove me wrong.) Tools evolve over time, as circumstances change, and as we grow. A tool that works at one stage of life may be useless at another. But I do think there is value in learning to identify which habits give us peace of mind and stability on our feet, and which habits trigger anxiety and fuel insecurity.
  Finally, I’ll dissect some ideas of power and success and reformulate them so that you can better see what you can control and have the courage to use your strengths. I believe that within each of us there is a light that is unique and unique to you, a flame that needs to be protected. When we can recognize our own light, we have the ability to harness it. When we learn to tap into the unique qualities of those around us, we are better equipped to build compassionate communities and make a difference that matters.
  I’m not saying all of these things are easy, or that you won’t encounter obstacles of all kinds along the way. Please also remember that everything I know, and all the tools I rely on, was acquired through trial and error, through years of constant practice and re-evaluation. I’ve spent decades learning by doing. I made mistakes, made adjustments, and corrected along the way. I have taken slow steps to get to where I am today. If you are a younger reader, remember, be a little more patient with yourself. You are now standing at the beginning of a long and interesting journey that has not always been comfortable. It takes years and years of gathering information about who you are and how you want to act before you slowly find your way to more certainty and a stronger sense of self-identity. Gradually, you will begin to discover and use your own light.
  Like I said, I can’t have all the answers, but I’m open to a conversation. I think it is valuable for us to face these issues together. I am willing to open up a space for dialogue, to allow more people to participate and to broaden the topic. I believe that it is through this that our pace of progress has become more stable.

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