Grieving The Living: My Experience With Unconventional Grief

When I was 11 years old my mom began stuttering + struggling to come up with words. From there it seemed her health snowballed day by day. Her speech deteriorated rapidly then she began losing motor functions on her left side + started having seizures. Doctors spent years poking + prodding her, diagnosing her with things like MS + Brain Cancer before they reached the subsequent diagnosis of RVCL, a rare genetic disease. The degenerative disease quickly robbed her of her independence. The ability to walk, talk, + do all of the things that brought her joy like knitting, nights out with friends, + playing with our dogs, seemingly leaving a shell of who she once was behind.

Upon diagnosis, she was given ten years to live + every year it seemed we lost a bit more of who she was. I struggled to understand why I was losing the woman I knew to be my mom. The one that corralled my friends + I to ++ from school. Chaperoned every class field trip. Spent summers dropping me off at sleep-away camp. Packed my lunch with me every night + tried her best to cook dinner… even though she wasn’t the greatest cook. I came to resent her for getting sick, unable to separate my feelings about her illness + her actually being ill. This is something common for people experiencing unconventional grief, grieving someone that’s still technically living but not in the same way you knew them. For ten years I spent every day grieving my mom until she finally passed in September of 2021. After her passing, I was inundated with messages consoling me of my loss but for me, her death was the easiest part. I knew she was finally at peace + so was I because it felt like the last piece of the puzzle was finally in place. If anything I could have used those messages every year since her diagnosis but the people around me struggled to understand that. To them, grief was something that came after death but it commonly begins long before death arrives. We grieve the loss of so many things along the way, personality, independence, stability, hope, future dreams, + countless other losses. Grief is about so much more than just death.

Many people experience grief after the passing of a loved one but I experienced it during. Death is often viewed as the basis for grief but mourning the deceased is only one facet of it. I hope by sharing my story I can help others feel seen on their journey with unconventional + anticipatory grief.

1.] Don’t let others tell you how you’re supposed to grieve

For years people would make comments like “at least your mom is still here, you just need to value the time you have with her because she’s not dead yet.” But to me she was dead. The woman who raised me was no longer the woman that was present in my life + she wouldn’t be the same person in the years to come either as her disease accelerated. These comments diminished how I felt about my grieving process + made me feel like I was taking the wrong approach. Don’t let others tell you how you’re supposed to grieve. Unfortunately, there’s no dedicated formula or guidebook + no amount of self-help books will give you the exact answer you’re looking for. Anticipatory grief lessens the grief following a loss for some, while others’ grief following a loss may not be impacted at all. However, you’re grieving know that your process is normal + take it at your own pace, not at one that others try to prescribe you.

2.] Find your people

It’s easy to feel like you’re all alone in a wide-open field when grieving. For me, this loneliness quickly turned to self-isolation + I cut off all my friends, bottling up any negative emotions that tried to surface. It’s hard at first, I will be the first person to say that but you have to find your people + lean into them throughout this process. This can mean, friends, community, family, therapists, support groups, or a combination of all. Therapy was + still is the biggest tool for me. Having someone I can share my emotions with in a neutral environment is so beneficial which is why I’m rounding out my seventh year in it! This year I will be joining my first support group for other families affected by my mom’s disease. Being in an environment where others genuinely understand what you’re going through + can sympathize from experience is something I think I would have benefited from throughout the process.

3.] Write down your most treasured memories

At times it’s easy to get caught up in the illness, losing sight of who the person was. One way I combat this is by writing down some of my most treasured memories as they come up. Then on the bad days, I have a collection of uplifting stories, quotes, + pictures that can help ground me.

4.] Let yourself grieve

Losing someone to disease, addiction, traumatic brain injury, etc. is painful + it can be hard to acknowledge losses along the way when they’re constant. I encourage you to let yourself feel your emotions at the moment + to know that they are completely normal. Acknowledge that even though your loved one may not be dead yet you are still allowed to grieve. When someone formally passes you may experience a sense of relief that is completely normal but can quickly turn to guilt. Feeling relieved doesn’t mean you love the person any less. Mindfulness is one tool that’s helped me stay present + aware of the emotions I’m coping with as they come + go.

5.] Take care of yourself

Easier said than done, right? CHAARG has helped me find great ways to take care of myself by exploring a new workout every week surrounded by a community of supportive women to get my mind off things. Some other ways I take care of myself are through yoga + meditation. Sometimes taking care of yourself just means letting your emotions out. As college students, it’s easy to feel like you don’t have time to ruminate on your own thoughts but sometimes that’s exactly what you need. This can help you come back with a clearer mind as you approach daily tasks.


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