A few weeks ago, I attended one of the National Institute of Mental Health state conferences to fulfill a class requirement. It was an all-day affair, with tote bags and name tags and a catered luncheon. It was all very professional, and as a result, I felt a bit like an imposter — not yet a therapist, but knowing in my heart of hearts that I was where I was supposed to be. The conference had three breakout sessions, and one was about ambiguous loss — loss without closure or understanding.
I have been a casual student of grief for years. Something about the concept speaks to me, grief and its mess. Even when you think you’re past it, sorrow can hit you fresh and unsuspecting on a bright, sunny morning, and it’ll feel like you’re falling into pain all over again. It’s familiar to me, and not just because I have things to grieve. It feels intrinsic. And it occurred to me during that breakout session that I am called not to grief, but to loss.
During the Q&A portion of the talk, someone mentioned quadriplegics and how paralysis of the body leaves one with tension — the body remains intact, but a sense of emotional disconnect remains that prevents a person from being in full communion with the physical self. I felt that deeply. When living with a disability, one is constantly reminded of what is lost, or what will be lost someday. It’s a never-ending cycle. A person may think they’ve come to terms with it, but then something happens, perhaps small and inconsequential, and they’re back where they started. Square one. Loss without closure.
I’m writing this the week of Thanksgiving. It’s been a hard few days, between anaphylaxis and the steroid they put me on to keep the reaction at bay, which gave me a whole host of side effects from nausea to sleep problems. I’m wiped, and my body’s starting to reflect that. I have no energy, I’ve had a headache all day, and not even my vitamin D lamp is denting the dark gray sky outside my window. Of course, I know it’s a body thing. Like my dad always says, “Exhaustion makes cowards of us all.” I’ll get some sleep and wake up tomorrow to a new and shining world. But right now?
Right now, I feel very much like I did earlier today, sitting across from my therapist, listening to her talk about life and fairness. I told her I’ve been angry with myself for not being the 23-year-old I wanted to be as a junior in high school. And I’m angry with the world for being strange, unpredictable, and yes, inaccessible. I’m a counseling student. I know that anger can be useful. It’s a primary emotion, after all, the drive behind motivation and change. But knowing it and living it are two different things. Sitting with your anger is hard, especially during the holidays, when all you really want is to be grateful.
I am, though. It occurred to me today, sitting across from my therapist: I am grateful, just as I am angry, just as I am grieving. That’s the thing about ambiguous loss. It comes in waves. And, oddly enough, it’s the waves I’m grateful for. Ideally, the lake of my life would be calm, crystal clear, the deepest of blues. Ideally, there wouldn’t be a single ripple. But life isn’t found in the still, windless days.
Life is found in late-afternoon ambulance rides to the emergency room. Life is found in groggy, gray mornings, craft stores full of Christmas decorations, my best friend saying she loves me. Small things. Inconsequential things. The ups and downs. Because that’s all part of it, ambiguous loss, living with a grief you never fully realize. On some days, the hole in you is all you know; on others, you forget it entirely.
Sometimes, on rare occasions, you even get to fill the hole with something new.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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