When Chronic Illness Makes Dreams Go Quiet

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The refrigerator was humming, the clock was ticking. My wife was across the room when she asked, Do you still have dreams? My brain went blank. Usually, I have a comment ready, an opinion, an unnecessarily detailed complaint about an appliance. This time, nothing came. I searched for an answer while the silence stretched between us.

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With a little dark shoot. And a whole lot of grin. Oh man, heroes with him.

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Welcome to A Body Rebels. I'm Tate. This podcast shares my personal experiences and is not medical advice. Please speak with your own provider before making medical decisions. The voice you're hearing is AI, because illness makes speaking difficult, but the writing, memories, opinions, and experiences are mine. I'm talking about losing sight of my dreams while managing illness, and a concert which helped me hear them again. My wife asked her question in 2011. She meant plans, hopes, something I wanted beyond getting through the next day. I had nothing ready. I searched my mind for a trip, something to learn, a project I wanted to begin. Nothing came forward with enough feeling behind the words. The silence frightened me because I was still functioning. I was married, I was working, I was showing up for the responsibilities of my life. My days were full, and I had plenty to think about. But when I tried to picture something ahead of me, something I wanted rather than something I needed to manage, the picture was empty. I hadn't noticed how much of my attention had moved into medical care. A doctor visit led to a scan. A medication needed attention. A symptom interrupted sleep. Another result arrived, followed by another decision. Each demand had a reason. I wasn't filling my calendar with appointments for entertainment. Over time, though, the next refill or phone call became the farthest point ahead I regularly considered. I knew what needed doing next. I had stopped asking what I hoped would happen beyond those obligations. My wife's question reached somewhere the medical calendar never reached. I had become practiced at evaluating the cost of ordinary activities. An errand involved more than distance. An evening out included thoughts about fatigue and the following day. Even a conversation sometimes required energy I wanted to save. Those calculations helped me manage my life. I depended on them. Eventually, I began making decisions before desire had much chance to speak. I considered the reasons to decline, weighed the inconvenience, and settled on the sensible answer. After enough disappointments, wanting less seemed efficient. A plan I never made wouldn't need canceling. An experience I never anticipated wouldn't leave an empty space if my health interfered. I understood the appeal of keeping expectations low. I had enough uncertainty without giving disappointment a specific date on the calendar. I grew careful about warning things aloud. Practicality became an easy explanation. I was tired. My body required attention. There were responsibilities to meet. All true. Yet my wife had asked about dreams, and I answered with silence. Somewhere along the way, I had stopped expecting myself to have any. Her question stayed with me. I wondered whether I had packed away my desires because disappointment felt too heavy. I wondered whether part of me avoided plans because I doubted I'd live long enough to see them unfold. I didn't enjoy admitting either possibility. Hope had helped me through difficult periods. I believed in hope. I valued hope. But making a plan involved a different kind of exposure. A plan gave my hope a shape. An illness had interrupted enough of my life for me to recognize how much losing a particular experience would hurt. So I waited. Until the next result, until I felt better, until a medication settled, until my body became more predictable. Waiting sounded temporary every time I explained the arrangement to myself. Eventually, waiting became how I lived. Then came the Olivia Newton-John concert. She was my favorite singer. I had waited 40 years to hear her perform live. The weather was cold, rainy, and windy. The drive was about an hour and ten minutes. I was tired, and staying home had plenty in its favor. The couch looked unusually persuasive. I remember the dark road and rain on the windshield. I remember the familiar argument in my head about whether going made sense. Fatigue had evidence. The weather supported fatigue's position. Common sense seemed prepared to recommend pajamas. I knew evenings when canceling was the right decision. I respected those evenings, and I still do. But my reluctance had another layer. I wanted this concert enough to feel vulnerable. Forty years of anticipation made the evening matter. Staying home would spare me the effort, but staying home would also spare me the risk of wanting something so much. I had grown accustomed to saying no early. Sometimes my body needed the protection. Other times, I used the same reasonable language to avoid disappointment. In the moment, separating those motives was difficult. Both sounded sensible. Both knew how to make a convincing argument. I went. The drive was long. The weather stayed unpleasant. I arrived tired. Then, during one song, during one verse, something shifted. I don't remember the experience as a grand revelation. I was listening to a voice I had loved for decades, and I recognized a part of myself I hadn't heard from in a long time. I had wanted to be there. Beyond arranging medical care, meeting responsibilities, and conserving energy, I had wanted an experience for the pleasure of having the experience. And now I was sitting there, hearing her sing. For a moment, my attention belonged to the music. The recognition was quiet, but I felt the difference. My dreams hadn't vanished. I had given caution so much room, I struggled to hear anything else. Underneath the fatigue and fear, I still wanted things. I didn't leave with a new body. I've lived with sarcoidosis for 20 years. Heart failure remained part of my life. A beautiful voice hadn't erased my limits. Sarkoidosis didn't step aside in the parking lot and offer me a fruit basket. I went home with the same health problems and something I had been missing. An experience I looked forward to, chose, and enjoyed. I needed the reminder. Much of managing illness concerns, preventing trouble, responding to trouble, or recovering afterward. Those responsibilities occupy real time and demand real effort. Pleasure easily becomes something to consider once every other concern has been settled. For me, those concerns rarely settle themselves into a tidy finished pile. Another appointment arrives. Another question needs answering. My energy changes. If enjoyment always waits for a completely clear schedule and a dependable body, enjoyment waits a long time. The concert didn't make me careless. I still knew an outing involved more than showing up. Parking mattered. Walking distance mattered. Stairs mattered. So did having enough breath and considering how I'd feel the following day. I didn't resent myself for thinking ahead. Experience had taught me to consider those details. What troubled me was how easily preparation turned into refusal. I sometimes treated uncertainty as sufficient reason to abandon an idea before examining the particulars. The future was unpredictable, so I kept my plans close and my expectations modest. There was comfort in having less at stake. There was also a cost I hadn't been counting. My days remained functional while my inner life became smaller. I kept track of what needed attention and lost track of what held my interest. Hearing Olivia Newton John helped me recognize the difference. I still loved music. I still felt anticipation. I still had the capacity to sit in a concert seat and be moved by a song. None of those feelings needed a medical explanation. They belonged to me. I've thought often about the size of a dream since my wife asked her question. At first, I searched for an answer worthy of the word. A substantial plan. Something impressive enough to prove I still had ambition. Now I'm more interested in whether a possibility makes me look forward to a day. Hearing a singer I love belongs on the list. So does making something with my hands, learning something, or writing a page I want to write. I don't need every desire to become an achievement. Some are experiences I want to have, some are interests I want to keep. Others need more energy than I have available, and I'm still allowed to want them. Admitting a desire doesn't commit me to ignoring my limits. I find relief in remembering this. I spent so long evaluating the feasibility of everything, I began rejecting an idea almost as soon as I felt drawn toward one. Now I try to let the interest exist before deciding what happens next. Some plans change size, some wait, some never happen. I still feel disappointment. I haven't found a method for making uncertainty painless. Years ago, a psychic told me I'd live to 92. I enjoy picturing myself at 92, still opinionated, still annoyed by bland food, still giving a look across a room which asks who approved the nonsense. I have no guarantee. I also have no reason to treat every remaining year as belonging exclusively to medical management. I'm a husband, I write, I love music. I've worked as a private chef for one family household for decades. My health affects how I live all of those parts of my life. My health doesn't supply every reason I want to keep living them. I still want to make things, learn, laugh at the wrong moments, and love my wife in ordinary daily ways. Saying I still want things took longer than I expected. When I returned to her question now, I remember how exposed I felt without an answer. I also appreciate her asking. She noticed a silence I had grown used to carrying. The concert gave me something concrete to place beside the question. A cold, rainy evening, a long drive, forty years of wanting to hear a favorite singer, one verse during which I recognized myself again. I don't treat the memory as a cure or a set of instructions. Some evenings I stay home. Some plans exceed my energy. My decisions still involve caution. But when I consider something I want, I try to give the wanting a little time before beginning the calculations. I remember sitting in the concert seat, tired and glad I had gone. My wife asked whether I still had dreams. The answer took time to reach me. Yes, I still do. This is A Body Rebels. I'd love to hear from you. Write to me with your thoughts on the podcast, the topics or issues you'd like me to discuss, or a story from your own life. With your permission, I might share your story in a future episode. To send me a message or leave a voicemail for the show, visit abodyrebels.com. I'm Tate. Thanks for sharing this time with me. Until next time, take care of yourself, keep breathing, and remember, sarcoidosis is only rare until you're the one living with it.