Loss, Grief, and Life After a Death

The first month after losing my sister was black. Thankfully, it has become a blur overall with time, and I don’t remember it as specifically as I used to. I have the impression of the pain, but I can no longer recall the sensation in my body. I am grateful for this beyond measure. 

As impressions go, I remember the worry for my parents so far outweighing my grief that the thoughts of worry delayed processing the sensations of my loss. I don’t recall when she said it, but we were out for a walk in the field; my Mom said that she felt as though she and Dad were ahead of me in the grieving process, that they had made more progress than I had. It was entirely accurate at the time. 

In that first month, pain and tears were so close to the surface that I wasn’t functioning. I did some of the things I was required to do: shower, get dressed, drive to work, and sit in an office chair at a desk, but beyond that, my mind was as if the ocean floor had given way and an enormous whirlpool had pulled me under. I was drowning.

People have a lot of advice for someone going through trauma. Some advice we seek out searching online for how to manage grief, how to help a family going through loss, and how to take care of yourself so you don’t sink into such dark depths that you may not survive it. Other advice is told to you, whether or not you wish to hear it. 

The internet has many suggestions on how to cope with loss. Journaling is very near the top of many lists. I had never been a consistent journal-keeper before losing my sibling. When I started journaling to deal with my grief, I wrote to her to tell her about my life After.

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Dear Sister,

Tonight, it will be four weeks since you died. We still don’t know how or why. Not that it changes anything. You will still be gone, and we will still feel broken. I played hooky from work today. It used to be I’d take a random day off of work and spend it with you and Mom, maybe Grandma. We’d go shopping and have lunch. We’d ask where you wanted to go, and you’d always pick the same places: Barnes and Noble, 2nd and Charles, GameStop, and Disc Replay. You liked going to the specialty grocery store to choose a little dessert at the bakery, too.

I spent the day cleaning the house instead. I thought about you all day. I don’t know who I am without you. I’m not a “big sister” anymore. My whole life, I’ve been supposed to take care of you. I didn’t even know I had a purpose until it was gone, and now I don’t know who I am or who I’m supposed to be. I’m worried about Mom and Dad. It has to be worse for them if I feel like this. Time keeps moving, and the world keeps working, and I just have this sense of being outside of it, being forced to go through motions that don’t matter anymore. I don’t know what else to say, but I miss you. My gods, but I miss you.

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My sister was born when I was two. There are innumerable photos of us as happy children growing up in rural Michigan. My parents would have to tell you when they noticed her lagging behind the typical benchmarks of child development. I only remember her as her. Not that she was different.

I am a stereotypical “first child,” an incongruous mix of surrogate parent and child. Eldest children are typically expected to help care for and raise their younger siblings. However, being children (or teens) ourselves, our siblings don’t see us as an authority figure. They often do not do what we tell them to do, even though our parents told us to ensure the younger ones did something or behaved a certain way.

We older siblings poorly imitate a caricature of our parents and expect to be listened to in the same manner as our parents expect to be listened to. In my childhood and teenage years, this was often a disaster that led to my sibling crying, always as my parents arrived from wherever they’d been. They then reprimanded me for causing her to cry.

My description sounds dramatically negative; however, that is not my intention. We were (and still are) a very close, loving family. As an adult, I have learned not to fault my parents for raising us the way they were taught to raise children by their parents. They took what they knew and tried to do better. No one can ask for more.

My experiences as a first child instilled in me a deep devotion to caring for my sibling. I wholeheartedly accepted that I would be fully responsible for her care when my parents passed. It was so intricately ingrained in me that when my now-husband and I were dating, I adamantly told him I wanted no children and that my sister and I were a package deal. She would live with me one day, regardless of whether he was in the picture.

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For my parents and me, having a child with special needs in the family meant we built our lives around her. Everyone had to look after her. We all had to plan for the worst situations in case something happened to us, her caregivers. My Dad worked decades to provide for his family and ensure there would be enough left behind to take care of my sister. My Mom worked in the school district, which allowed her to be home when we were home and be there for us over breaks. When my Mom retired, she and my sibling spent practically every day together.

When she wasn’t with my parents, she would stay with my husband and me. We had cleaned out a room in our house and made it into a bedroom for her. She would stay for a weekend or a week at a time. She liked the 24/7 internet access, but it also gave her time alone when my husband and I worked. 

It wasn’t until she died that I realized my sibling had been the central pillar of our family. She was the keystone that supported the entire enterprise. Without her, the whole structure collapsed. My parents and I felt lost and aimless. The emptiness in the family home was palpable; from the space she would sit in the living room, to the sound of her television or video game, to her asking for things she knew she wasn’t supposed to have. 

I think the worst was for my Mom. Suddenly, after 37 years, she had nothing to do. Or, so much less to do that it felt like nothing. My Dad, why should he work? He kept getting laid off due to COVID, and he likely thought he was needed at home to be an emotional support for my Mom.

Meanwhile, the world felt surreal whenever I wasn’t at the house. Their lives could just be going on as they had been. My day-to-day life away from the family was only different because of my pain. With no tangible proof that she wasn’t just at home watching TV, my grief felt askew from what had been my reality for so long.

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Since my husband and I decided to spend the rest of our lives together, he has always said he would die first. My rebuttal was always, “Okay, but you have to live until you’re 90.” 

Once I was old enough to understand that I would have to care for my sister if something happened to my parents—and to be clear, I don’t know when that happened; I feel as though it has always been that way—I always saw my elder years spent with her. 

Even after my husband and I were married, I assumed that he would die before me, and she and I would be old together. The older I became, the more I worried that, with just the two of us living together, I would die, and she would be alone in the house. Your mind has a disturbing ability to venture into some very dark places once it starts down an unpleasant path.

Shortly after my sibling passed, it slapped me like a backhand that I would be alone. If life worked the way we all say it’s supposed to, my parents would one day pass, my husband would die, and I would be alone. Years later, that thought haunts me still. I don’t mind being alone. But I mind very much that my future will never be what I had known it would be for decades.

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It has been over four years, and her birthday is just around the corner. Tears and heartache are very close to the surface. It has taken a lot of work and a lot of help from friends and family to have come this far on my grief journey. There is never an end, just distance traveled between then and now. And, with distance, a nominal lessening of the pain.

To all of you traveling your own journey of grief, I see you.