I lost my Mom (Mama) on February 24th, 2020. In reality I lost her well before then – in June of 2019, when I noticed that something was off with her health, which was followed by a confirmation with diagnosis on July 10th, 2019. Leptomeningeal disease, breast cancer metastasis to the central nervous system – the cerebrospinal fluid and the meninges precisely – with no curative treatment available. At the time, Mama’s leading oncologist, dr. A, gave us a really grim prognosis of survival up to 3 weeks. Even though Mama beat those odds, along with some others later on, it was a really unlevel playing field with the demon that had already claimed her body back in 2015 at the time of the primary diagnosis.
While the rest of the family panicked, I ran on momentum. I didn’t allow myself a moment of grief over what was happening because we were in a crisis and taking time to feel the emotions associated with terminal illness and imminent death would’ve meant lost time and expedited death. So, I took it upon myself to take on Mama’s responsibilities, all while being a pillar of strength for everyone else and trying to find a cure or at least a better treatment course than palliative care for Mama, so that we would get more time with her. Mama and I climbed hills and walked through valleys together. I took her to every single appointment, whether for chemotherapy infusion, radiotherapy, physical therapy, dental (she was in such good shape in December that she made dental appointments into January), or even shopping for a mattress or something as simple as a winter hat. I picked her up off the floor countless times, I even called for the neighbors once to help me get her up off the freezing garage floor on a stormy day. I forced vitamins and supplements, healthy food, and eventually just any food or water, to sustain her. But we also had fun. We jammed out to music, we went out to eat or got takeout, we ventured outside of the city limits, we watched comedies or rom-coms, and sometimes we even cooked together.
SACRIFICES ARE SIMPLY ABOUT PRIORITIES
People told me that I did a lot and by did, I mean sacrificed. I quit school, I didn’t look for work, I didn’t even have a relationship to focus on any longer, and my social life was nonexistent, so that I could provide optimal care for my Mama. I fought for her as if she was my child, and in a way, she was. To some, indeed, maybe it would have been a lot. To me, it was the least I could do. I took care of her for barely 8 months; she took care of me for 30 years. She was invincible. But I eventually broke. I broke from all the pressure and the physical and emotional strain, in addition to the verbal abuse that frequented once Mama’s condition improved. There were times when I was angry with her because my caregiving duties became an expectation, rather than simply appreciation. There were times when I didn’t want to be there. There were times when I was annoyed that I had to change her out of her wet pants and clean the couch off urine because she was unable to feel the urge to go to the bathroom. There were times when I got irritated with yet another episode of vomit I needed to clean up. There were times when I selfishly resented that our life came down to a vegetative state and staring at the same 4 walls day in and out. Looking back, it was all really idiotic of me, because none of it was her fault. She didn’t choose to be sick, especially when there was still so much life ahead of her, or us.
I thought I was a bottomless pit of compassion and love which should have been enough for me to fight through my own struggles because others needed me more. But I was completely depleted, so at the end of December, I went on a trip abroad. For the sake of my own wellbeing and everyone else’s I felt that I needed to isolate myself from the sickness and darkness that I created for myself. I was supposed to be gone for 26 days, but per doctor’s recommendation I came back a week earlier. Mama was declining; her most recent MRI at the time showed progression of the disease and the only intervention the oncologist, dr. B (we switched from dr. A in September after the 3-week prognosis), was willing to try was intrathecal chemo again. Mama received a couple of rounds, after which dr. B’s call in early February was to place Mama in hospice care and Mama went downhill from there. On February 24th, 2020 I ordered home oxygen for her because poor thing was gasping for air like a fish out of the water, and a few hours later, at 11:24 pm, I laid next to her and held her hand and face as she took her last breath.
I WANTED THE WORLD TO STOP…
When Mama departed, I wanted nothing more than for the world to stop spinning, so I could take just one moment to absorb what just happened, breathe, scream, cry, or do absolutely nothing. But instead, it viciously continued, and with that, came responsibilities. My dad was too devastated to handle anything, even himself, so I was the one on whom all the weight collapsed, yet again. I called the hospice nurse who kindly informed me that she couldn’t leave our house until the body was picked up by the funeral home staff. Well crap! We hadn’t made any arrangements, because how can you possibly plan for someone’s death when you hope for their recovery until their last breath?! So, with Mama’s still warm and calm body next to me, I made her cremation arrangements. The funeral home staff came, packed her up, I watched them carry her down the stairs onto a gurney, load her up into their van, and disappear into the darkness. And that was it.
Even though I lost Mama last year, her physical absence really took me to another emotional dimension. But it was more of a vacuum, where nothing existed. I didn’t know what reality was, I still don’t. I thought it was a lucid dream that would end when I opened my eyes, but not even clicking a pair of ruby slippers 3 times or rubbing a genie lamp would have changed the outcome. My world collapsed and the entire essence of my being was disrupted. I lost my purpose, my best friend, my confidant, my partner in crime, my mentor, my MOM. I really wanted to die. It wasn’t the first time. But this time I really couldn’t see a future. Surely, not one of which my mom isn’t part of. I was confused, angry, sad, lost, and empty, but needed to keep going somehow.
… AND THEN THE WORLD STOPPED…
My world disintegrated and it hurt. Everyone else was fine and it hurt. I wanted time and the world to stop because I wanted everyone else to feel what I felt, convinced that collective grief or healing can somehow restore my inner peace. The worst part about that is that a couple of weeks later, the world did actually stop (due to the COVID-19 outbreak) but it didn’t make me feel any better. In fact, I have suffered even more deeply. All of a sudden, immense panic, fear, and anxiety consumed the world. Thousands of people have been getting infected by coronavirus and a small percentage has been dying. We have been ordered to stay at home to thwart the spread of the virus and inhibit overwhelming the healthcare system even further. Businesses closed, millions lost their income, probably more lost their minds, and some lost their loved ones while some still will. This is a trying time for all of humanity and I certainly understand the struggles of losing a loved one, of not having a prospect for the future, of not being in control of the circumstances, of the lack of but tremendous need of in-person interactions. And here I am, begrudging yet another incident in this already shattered year of my life, because all I was looking forward to was moving on from the pain and getting back on my own 2 feet.
LONELINESS & STRENGTH
This past year has been an excruciatingly lonely road for me. I had a partner who didn’t understand me and the shift in my priorities when my mom received the terminal diagnosis, which resulted in our separation. My family didn’t alleviate any of my duties, neither did they understand my need to get away, and that created a lot of tension in the house. My friends felt helpless in their quests to lift my spirits with any words or actions, but I can’t blame them – at the time, and even in the present moment, I didn’t and still don’t know what I need. Though sometimes it really is just a hug, just pure and innocent human embrace telling you “I’ve got you.” The amount of internal trauma I experienced prior to Mama’s passing exponentially increased after her death, and in a matter of a few weeks I went from thinking “Who do I call when I need someone to be with me at 3 in the morning?” to “Who do I call when I need someone to be with me at 3 in the afternoon?” As lonely as I’d been until this moment, now I can’t even get as little as a hug, not even from my own family who, due to the pandemic, is practicing social distancing (thank God for my dog and her unlimited supply of hugs I trained her to give – silver lining?). But I suppose this is how strong character is built, right?
Strength describes someone’s capacity to withstand great force or pressure and while there is no doubt or debate that I’ve successfully checked the box, constantly having to be strong for someone or even myself is simply draining. My dad has told me several times that I need to loosen up [with reasoning that I won’t be able to find a partner to go through life with… “okay…“] and truth is, I would loosen up if someone else stepped up to the plate. But no one ever has, and I didn’t have it in me to let my Mom go without all of my efforts exhausted. Even now, when my focus has shifted away from Mama, I need to persevere in my loneliness to be of support to my weeping and grieving dad who’s lost his reason to wake up every day and who no longer wants to live. Now, yet again, I am in brainstorming mode because I’ve relied on him for the better part of this past year for my own support, and if he, with his already compromised physical health, succumbs to COVID-19, I will end up left behind with all this crap to figure out without any resources. “But you’re smart and resilient, and you will get through this!” – annoying voices in my head, but also everyone else’s in my immediate environment. “Yes, of course I will! What other choice do I have?” Sometimes, being strong is the only choice you have. But where do you gather it? The one thing that has been a constant (besides my dog) and a source of emotional and physical relief for me throughout the entire process was group fitness and now, due to the pandemic, my last bit of happiness has been taken away from me, too. Thus, my strength and sanity have been diminishing and my patience limits are being pushed even further. When or where does is ever end?
GRIEF & GUILT
With not much else to do in the last couple of weeks, I’ve begun feeling the first waves of grief. Grief is already an isolating experience and even more so when handled in [enforced] isolation. It’s complex. There is no rhyme or reason to it – sometimes I feel like entertaining others and other times I feel like ignoring the world around me, and sometimes both of those at once. It may not be fair to others, but where’s the Fairness Committee to tell me that my feelings are invalid and that I don’t have a right to them even if it’s bad or ugly? Ask any counselor and they won’t tell you otherwise.
“Grief, I’ve learned, is really just love. It’s all the love you want to give but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go.”
– Jamie Anderson
Interesting perspective. It may be true, but it may be not true. It’s something that I will continue to explore as I get swallowed by these waves. I love Mama to pieces and to me, loving her above all was wanting her suffering to end, rather than letting her endure it so that we’d get the satisfaction of her physical presence with us. There are times when I am on my way back from a walk with my dog and I think to myself “I’ll check on Mama as soon as I step in” or “I want to tell her about all the Christmas decorations that are still up in people’s front yards in April” and then I realize that she’s gone and that I won’t ever be able to do that again. I walk around the house that my parents purchased 3 weeks prior to Mama’s diagnosis, and I resent the fact that it was her dream home and she wasn’t even able to construct it the way she imagined. Instead, I took that privilege and I feel guilty to admit that I’ve turned it into what it has been and what it now is.
Guilt is another prevailing feeling that has been accompanying my grief, maybe even overpowering the grief. I’ve put myself on trial for things I did or didn’t do but should have, could have, or would have had Mama still been here. For a few weeks after my Mom’s death I felt guilty about my inability to grieve. I was still smiling, still laughing, still socializing. But maybe I found myself in that vicious cycle of responsibilities again, because I needed to organize Mama’s cremation, funeral, financial affairs, etc., and I didn’t allow myself to feel defeated because that would have meant delaying those daunting tasks. Maybe they simply stole a portion of my time that could have been dedicated to despair, I don’t know.
Eventually though, that list of tasks withered and left with nothing but my own thoughts in a lockdown, I have been chastising myself for all the times I reacted negatively to anything pertaining to Mama. I feel guilty about my annoyance when she wanted to go to TJ Maxx to buy slippers, but I wasn’t in the mood to shop, so she got upset and we left the store empty-handed. I feel guilty about all the times I yelled at her for giving up on herself because I wholeheartedly believed she had the potential to fully recover. I feel guilty that there were times when I stopped pushing for progress altogether. I feel guilty that I spent time reading or studying absolutely useless things when I could have spent more time with her on the couch watching stupid TV shows. I feel guilty that there were times when I heard her scream from pain when my dad was changing her at night and I didn’t get up to help. I feel guilty that she was no longer able to find joy in the little things like drinking a cup of coffee in the morning. I feel guilty that I couldn’t bring myself to have difficult conversations with her because I didn’t want her to think that there would be life without her. I feel guilty that even though I believed she’d recover I was only able to live life one day at a time. I feel guilty about my inability to turn her attitude around when dr. B began the hospice talk. I feel guilty that I loved her so much but not enough to get her through this. I feel guilty that it had to be her as I would have gladly taken that monster unto myself because the world needs her more. Even though we had some really good times and trips together, I feel guilty that we never went on that trip to Mexico like she wanted because I was too absorbed in my own travels or hobbies. I feel guilty that sometimes I didn’t want to listen to her gossip. I feel guilty that I hadn’t written down her most loved recipes. I feel guilty that I don’t even know her favorite color. And many other things…
I kept up a Facebook page with updates on Mama’s health and I’ve realized that most of them probably made me look heroic. But all of it was my own narrative and everyone is a hero in their own stories. Or a victim. I realize that now I’m probably playing the victim card. Especially with all the drama, horror, and misery going on in the world. To some degree, I am numb to most other people’s suffering at the moment, because I am drowning in my own. The crazy thing is that I wanted others to feel what I felt and still feel, and even if some of my peers lose their loved ones to complications from coronavirus, our experiences will still be unrelatable. Maybe then, it’s utterly naïve to believe there is such thing as collective grief and healing, as every single one of us needs to brave the battle alone.