Mourning the Person I Was: Chronic Illness and Ambiguous Loss

The skillet was sitting at the back of the cabinet. Heavy cast iron, black, solid, dependable. The kind of pan I once lifted with one hand while reaching for something else with the other. I wrapped both hands around the handle and tried to pull it forward. My arms objected immediately. My shoulders tightened. My breathing changed. The pan moved about three inches before I slid it back into place and closed the cabinet. Then I stood there staring at the door. It wasn't really about the skillet.

It's about a remote where the truth gets told. About a medical mystery. Growing old with a little dark humor and a whole lot of breath. When it's body throws a tenth.

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. In this episode of A Body Rebels, a chronic illness podcast, I'm talking about the grief that surfaces when an ordinary object reminds me of the person I was before my body changed. There's a name for this kind of grief. Ambiguous loss. It's loss without a clean ending. There's no funeral, no obituary, no date printed on a program, no gathering where the people I love stand beside me and acknowledge that an enormous part of my life has disappeared. I'm still alive. The person I'm grieving is still alive too. That person is me. The earlier version of me hasn't vanished completely. I still have the memories, preferences, habits, humor, and ambitions. I can still picture what it felt like to move through a day without examining every physical demand before agreeing to it. The parts of the life connected to that person are no longer available to me. A heavy skillet can reveal that in three seconds. So can an old jacket with a concert ticket tucked into the pocket? A pair of shoes I once wore for hours, a photograph taken somewhere that required more walking than I could manage now? An invitation can do it too. Before I accept, I may need to investigate the parking, stairs, seating, bathrooms, temperature, and the amount of recovery time the entire outing will quietly collect for me afterwards. Objects don't try to comfort me. They don't remind me to stay positive. They simply sit there holding evidence. I used to do this. I used to go there. I used to be able to lift that. I used to trust my body without conducting a full risk assessment first. I've noticed that grief after a death has a recognized language. It isn't always handled gracefully, but I understand the rituals. Flowers arrive, food appears, sadness is allowed to return unexpectedly. Anniversaries, familiar songs, and ordinary objects are expected to reopen a wound. When I grieve my healthier self, I often hear a different language. I'm encouraged to focus on what I can still do. I'm reminded that someone else has it worse. I'm reassured that I'm still the same person. I know those words are usually offered with love, but I'm still me, and I'm also changed. Both are accurate. I don't need to cover that conflict with cheerful language. Gratitude doesn't erase my grief, and grief doesn't cancel my gratitude. I can love being alive and miss the way I once lived. I can appreciate the person I am now and ache for the person who could walk farther, carry more, work longer, and make a plan without asking what it would cost physically. I've lived with sarcoidosis for 20 years. During that time, illness has affected far more than my organs or medical records. It has altered how I understand myself. Before my health changed, I relied on ability as evidence of identity. I worked, I cooked, I lifted heavy things, I solved problems, I handled responsibilities. I moved through a day assuming my body would follow my instructions. I didn't wake up each morning and begin a negotiation. Some changes arrived loudly. Others crept in through ordinary adjustments. I stopped doing one activity because I was tired. I turned down an invitation because I didn't feel well. I let someone else carry something. I rested between tasks I once completed without thinking. I stopped going to places that required too much walking. I removed one demand, then another, then another. None of those decisions looked enormous on its own. Together, they changed the borders of my life. My energy became more limited. The distance I could push myself narrowed. The number of tasks I could fit into a day dropped. Eventually I had to face a question I didn't particularly enjoy. Who was I when the abilities I once used to define myself were no longer dependable? I've spent much of my life being responsible, being useful, being the person who could take care of things. Needing help changed the view I had of myself. When someone else carries the bag, does the driving, moves the furniture, or completes a task I used to handle, I'm grateful. I can also feel a quick sting of embarrassment. The gratitude and embarrassment often arrive together. Like two people who weren't invited but somehow shared a ride. I know my worth isn't determined by how much I can produce. Knowing it and feeling it are two different experiences. I live in a world that celebrates stamina. I see busyness rewarded. I hear praise for pushing through pain, skipping rest, and getting everything done without assistance. When illness removes my ability to perform that version of strength, I can feel as if I've misplaced the proof that I'm valuable. I haven't. But my emotions don't always accept a logical explanation on the first reading. Then there's the language I hear around illness. Fight, battle, warrior, never give up. I understand the intention. Those words are supposed to make me feel powerful. They suggest that determination can protect me from whatever my body is doing. At certain moments, that language can be useful. At other moments, it leaves me exhausted before I've even done anything. My body isn't a foreign army. It's damaged, it's unpredictable. It has caused fear, pain, limitations, and enough medical paperwork to deforest a small country. But my body is also trying to keep me alive. My heart is trying. My lungs are trying. The tired systems inside me are working with whatever function remains. When I describe every symptom as an enemy and every limitation as a battle, I turn my own body into the place where both sides are being injured. Some days, strength looks like stopping. It looks like canceling a plan before I'm stranded somewhere without enough energy to get home. It looks like asking for help before I drop what I'm carrying. It looks like lying down before my body removes the choice. It looks like admitting that determination has never been a replacement for biology. The battle language can carry another ugly implication. I can hear it as a suggestion that becoming sicker means I didn't fight hard enough. I reject that completely. My rest isn't surrender. Accepting a limitation isn't the same as abandoning hope. I can seek treatment, advocate for myself, ask questions, and protect my health without punishing my body for failing to become what it used to be. This is the body I have now. It needs care. It doesn't need me standing over it with a list of accusations. One of the more painful parts of chronic illness is watching life continue in rooms I can't always enter. I see trips being taken and spontaneous plans being made. I watch work, exercise, and social life continue while I calculate the physical consequences of saying yes. I see my family adjust around me. Someone else drives, someone else carries the bags, someone else takes over a task that used to belong to me. I felt guilty about canceled plans, accommodations, fatigue, and the effect my health has had on the person I love. I've even felt guilty for surviving while not always feeling fully present in my own life. I'm used to survival being presented as a victory scene. Music swells, everyone cheers, I walk into the sunlight with excellent posture. My version has included joy, medication, fear, laughter, exhaustion, oxygen, medical appointments, and occasional arguments with household cookware. I'm deeply thankful to be here. I also mourn what it has taken to remain here. Those feelings don't invalidate each other. The shame often comes from believing I should have adjusted completely by now. After twenty years, shouldn't I know better than to be surprised? Shouldn't I have stopped looking back? Shouldn't I be entirely comfortable with every limitation? My grief doesn't follow that schedule. It can remain quiet for months, then appear when I find an old photograph, smell something connected to a particular memory, or open a cabinet and see a skillet I once used without a second thought. The memory isn't only visual. My body remembers the ease. It remembers moving without measuring the room. It remembers breathing without paying attention. It remembers the confidence of asking something of itself and expecting the answer to be yes. I miss that confidence. I miss the person who made plans without studying them like a legal contract. I miss the person who didn't need to consider oxygen, recovery time, distance, weather, and whether a chair would be available. I miss being able to trust that effort would produce a predictable result. I don't want to erase the person I am now in order to honor the person I was. The earlier me built parts of this life. I carried myself to the point where illness changed the direction. The current me has continued through circumstances I never had to imagine before becoming sick. I can mourn who I was without insulting who I am. I can say this isn't the life I expected and still call it a life worth living. I don't have to choose between anger and gratitude. Some days, both are sitting beside me. Sadness is there too. So is humor. Resentment occasionally arrives early and acts as though it made a reservation. Love makes room anyway. I no longer believe I'm supposed to finish grieving my healthy self. I'm learning to recognize the grief when it appears. I can look at that skillet and understand why my throat tightens. I can close the cabinet without calling myself weak. I can ask for help lifting it. I can use a lighter pan. I can also keep the heavy one because it belongs to my history, and I don't need to throw away every object connected to a body I miss. My health changed. My life changed. My identity changed with it. But my life didn't end at the border between before and after. I'm still here in the private ordinary moments, standing in front of a cabinet, adjusting a plan, accepting a hand, laughing when the alternative would be considerably less entertaining. I'm not a failed version of the person I used to be. I'm not a lesser edition with several useful chapters removed. I'm a person learning how to live with memory in one hand and the limits of my current body in the other. Some days I carry both fairly well. Other days I put everything down and rest. The skillet can stay in the cabinet until I'm ready to ask someone else to lift it. That isn't the ending I once imagined for that small moment. But it's kinder than standing there trying to prove something to a piece of cast iron. I'm Tate. Thanks for sharing this time with me. Until next time, take care of yourself. Keep breathing and remember, starcoidosis is only rare until you're the one living with it.