Maybe if we started creating the space that it takes for neurodivergents to grieve and process, neurotypicals would be able to allow themselves the time, space, and boundaries to grieve and process in their own way too.
Content Note: This article contains discussion about grief, mental health, and death.
Losing someone you love is never easy, and no matter how much we read about grief, we can never fully be prepared for it. For me, the last seven years have been so full of loss and hurt with a variety of family members—it started off with losing my mom, and ended with losing my mother-in-law. These losses were added onto with the sudden loss of my German Shepherd during the week of my 30th birthday, as well. It’d be an understatement to say that I am no stranger to Death. And that, maybe, we’ve actually become friends.
I know that this sounds strange to say, of course. We have such a hard relationship with Death. But, in losing my mother, my German Shepherd, and supporting my partner through the loss of his parents, I slowly started to realize that Death can be just as comforting as it can be cruel.
It took me a long time to get to this realization, and the process is by no means easy. I also want to stress that grief does not have an expiration date, nor is it a point of arrival where you can declare that you have grieved and finally close that chapter in your book. Each person’s grief is unique to them as an individual, and it does no one any good in comparing what each person’s grief looks like. Grief is a personal journey that never ends, but only brings us closer to ourselves and our loved one—even those that have moved on and passed over. That being said, I want to share my journey with you and hope that in it, you can find comfort. In whatever form that may look like for you.
When Death was the Enemy
My mother and I had a troubled relationship. It all started at the pre-teen age of 12 years old when she read my diary and confronted me about having feelings for a boy. You see, growing up in a Punjabi household, my parents were strict. The focus was on studying, and worrying about having partners later. I remember always being rebellious and butting heads with my parents, despite the fact that my mom and I had a lot in common.
It wasn’t until I met my current partner that I finally approached Mom about getting counseling for the both of us. I wanted us to be closer, the way she was with my sister, and I hated how I always felt judged by her. Though, it turns out that she always felt judged by me, too.
That is when disaster struck. Mom had been coughing for a while, but after already seeing three doctors who told her that it was just allergies, she was tired of the racist ways the medical industry treated her and dismissed her concerns. Three months later when her coughing became even more consistent and she felt out of breath, the doctors finally decided to check her lungs and found that she had lung cancer. They told us that she would only have 3 months left to live, and that they could try to extend that with chemotherapy.
Between the new diagnosis and our family members seeing us every day, I was completely overwhelmed and withdrew from all of it. Instead, I threw myself into university. I didn’t know it then, but as an ADHDer, it was so much easier for me to hyperfocus on something else because it effectively made me forget that Mom was sick.
Having people around in the house all the time was incredibly overwhelming, and was a constant reminder that I would never actually get time to just speak to my mom—just us. Not to mention, even when my sister did try to advocate for us to have space, it was not received well and was completely ignored.
I remember feeling angry, and unable to fully process my emotions because I wasn’t allowed the time or space to. And my sister, dad, and I weren’t allowed the time with my mom. The time we desperately needed. The time we were running out of.
In a short three months, Mom passed away at home. She passed away horrendously, and without us ever able to say the things we truly wanted to say to each other. My dad, sister, and I each struggled in our own way after her passing. For me, I was angry, and a lot of that anger was also turned inward towards myself and resulted in even more withdrawal, intrusive and suicidal thoughts.
We each sought therapy for ourselves, and we kept the lines of communication open between us three while the rest of the family slowly stopped coming around. Our grief became even louder in the silence.
That’s the funny thing about grief, we’re constantly fed a lie that it is something we go through in stages. And that one day, it just stops. But we don’t consider the messiness of grief, and how other people might get tired of how messy it gets. It’s the first birthday without the loved one, the first house you buy and not being able to call the loved one.
For me, it was the first time that I was approached at university to take on a project because I achieved really high marks despite dealing with her impending death at home. It comes back to you as if you’re witnessing their death all over again, and takes over your whole body. But it’s so hard to find the words to describe the pain that you’re in because as a neurodivergent person, you’re not feeling it in just your mind. While everyone feels grief all over their body, it seems like they’re able to differentiate between the two. But, at least for me, it was as if every fibre of my being was on fire with the pain of grief.
When Death Became a Friend
In a weird twist of fate, five years later, my mother-in-law was diagnosed with pancreatic cancer. Similar to my mother, she had pain in her stomach, but was lucky enough to get seen and x-rayed when the pain persisted. We knew she was really sick when she finally got diagnosed. And, similar to my mother, we were passed from pillar to post being told that they would start chemotherapy, but they never did.
We were more prepared this time after losing my father-in-law just three years prior, and knew that she wasn’t going to make it. So we talked. And we talked. My mother-in-law still held out hope for treatment, but she kept the lines of communication open. Our family took on roles that supported one another and prioritized my partner and his sibling. We organized time for my mother-in-law to rest when she felt like she needed it, and for everyone to see her for a few minutes at a time. And when it came close to her last couple of weeks, our family listened to our needs and stopped knocking to see her. My partner and his sibling got the time and space they needed to begin the process of grief long before my mother-in-law passed away.
I remember my mother-in-law sitting with my partner and me and joking that she will always be the ghost that will help us find our keys when we lose them. Or that if there’s ever a decision that we’re unable to make, she’ll help point us in the right direction.
This didn’t stop the pain of her passing, but it definitely made it smoother.
My partner was still angry in the end, and he also became suicidal for a while. But we had these memories to look back on and to talk about. In her final days, we weren’t confused about how much she loved us, if she held any regrets or remorse for the relationship between her and my partner. Death allowed us the time to say goodbye.
Grief is Never Easy, and Does Not Have an End Date
I still grieve the loss of my mom. I find new things that I would have called her for, or new things that only my mother could comfort me for. And, as an ADHDer, processing this grief is even harder since it’s as if it was just yesterday that we lost her. Not to mention, the days that I go in forgetting her—and then feeling so guilty that I could do such a thing.
But in my grief, I remind myself that this is my grief. I experience it unique to me. It has taught me the importance of boundaries in these times. Unfortunately, my family was not receptive to ours; but my partner’s family being receptive to theirs made all the difference. It allows me to show up for my partner in a way that is unique to him as an autistic/ADHDer himself.
Grief is a process, and there’s no single lesson that comes out of it. There might not be any lessons at all—and that is absolutely okay. There doesn’t need to be a lesson, or a place where you arrive to. You don’t need to rush to the finish line of no longer being angry, or no longer thinking about the person. There is no such thing.
As neurodivergent people, we see the world differently. And I think that this is nothing else but a strength—because maybe if we started creating the space that it takes for neurodivergents to grieve and process, neurotypicals would be able to allow themselves the time, space, and boundaries to grieve and process in their own way too.
About the Author: Sophia Kaur is a queer neurodivergent Sikh researcher and writer whose work focuses on the intersection of security, silence, and trauma. They are currently a PhD candidate at the University of Glasgow and hold two Masters: one in Social Work and the other in International Relations.
Sophia is working on their first novel, Saying Hello, which follows a young Sikh who discovers themselves through grief, culture, and family. In Sophia’s spare time, if she’s not binge-watching Netflix and chilling with her dogs and cats, she’s supervising her partner gardening while she sips coffee and pretends to help. Learn more about Sophia here: www.sophiakaur.org
This is the first time I have seen what I went through echoed back. I felt si alone as an ADHD person. I didn’t know this when my mom died. I only knew I was different. So grateful for this article.
I’m so sorry for your loss, Amanda, and glad to hear this helped you. Thank you for letting us know.
My mom is currently trying to get treatment for stage 4 cervical cancer. This has helped way more than most social workers and doctors I have talked to. This feeling is so intense, even though I’ve lost people in recent years. I dont know if she will make it 6 months when the doctor tells us a year.
Also queer and ADHD. Trying to graduate in 5 months. Thank you.
We’re honored to have helped a little, Megan. Many of us have been there with you. Wishing you peace and solace in this very difficult time.