11 days.

In about 2 hours’ time, it will be exactly 2 years since my mom died in my arms. As I sit here I am ruminating on why it is that my grief seems to have taken a 2-year sabbatical to return uninvited for what only can be described an opportunity to experience the last 11 days I spent with my mom, again, only this time, in an intensely raw, lack of distraction kind of way. Let me be clear here, I mean that in the most literal sense. Starting January 1^st, I awoke with the weight of what I imagine the first go around might have felt like if I hadn’t been consumed by fear, rage and shock of what my mom was putting me through. By choice. I don’t wish to imply that she meant or wanted me to feel any of those things and if she had perhaps been stronger or more fearless, I know she would have spared me, but alas, she wasn’t and I had committed to not only respect her wishes, but I accepted the weight of my choice knowing full well I would one day pay severely for it. I still do not know if it was me trying desperately to hold onto the “good daughter” persona I had invested so much energy in, believing it was true or the shittier more juvenile side of myself thinking “Aha!” I’ll show you what strength looks like. Perhaps an amalgamation of both. Ruminating on it certainly will have no effect on my choice, but perhaps taking a long look in the mirror of my soul and the tsunami of emotions of the past 11 days will help it process what it needs to, so it can finally shift into something softer, more palatable, as January 1^st has a tendency to not only occur, but be celebrated by the masses. Like the holiday season, it matters not what your personal inclinations are, the assault to the senses cannot be avoided. At least not whilst living in “civilized” society.

The dominating emotion under all of them on January 1^st was fear. I would not have said that back then, but time has a funny way of allowing clear thought to present itself if one leaves the door open with a welcome mat, as I did. Part of what hit me so hard wasn’t simply the weight of fear, it was the version that presented itself. It was not the fear of a at the time, 51-year-old woman with a lifetime of experience and more importantly, history of survival. It was the fear of a child. A very young child. I hesitate to say before I had created layers of armor, because even now I have yet to do that and whether due to my Autism or simply an unwillingness to harden as most do with age, I continue to experience things much like a child. By that I mean I feel fear, more than my brain gathering words to explain or understand, rationalize, with hopes to desensitize. So that first morning of the year, I felt cold and shaky. I briefly wondered if I had caught some bug. Sleep had been intensely restless; no position was comfortable. But no, outside of the areas I mentioned of discomfort I felt pretty fantastic. So, I went about my day doing my best to ignore it and just get some stuff done. But the agitation was rising and before I took it out on my husband, I had to take a few and just sit and think about it. Despite having a brain that likes to run at 100 miles an hour most of the time, this past year I have learned how to slow it down when I am really trying to relax or focus on a particular issue. After sitting for a few, it hit me like a ton of bricks, fuck. The best way to explain what I realized is that I felt like I had been swept away for the briefest of moments to hop in a time machine and go back to that first morning and see myself, chin up, mustering the strength I knew I needed for my husband and best friend who had come up to help, so some modicum of normalcy could be felt and I saw myself so clearly. There I was talking openly about how I felt (anger), coordinating people, friends, Hospice, making menus for a dinner that Saturday night that I would cook, checking in with my mom that she was comfortable with as calm of a smile as I could muster, putting her mind at rest that I could handle it and was in fact fine. Jesus Christ. Through that lens of reflection, I wanted to reach through the bubble of memory and punch myself in the face. “Wake up!” I wanted to scream, “you don’t have to do this, you don’t owe her this.” Shame reared her head for the briefest of moments and then ran back to the shadows as she understood the rage I aimed at her. “You have no fucking place here” I cried, and “you are no longer welcome.” I realized it had been shame that had empowered me to sacrifice my own emotional well-being way too many times and I was done. Sadly, time machines remain an elusive dream for many, so the only way forward was through. The rage I initially felt dulled and I was able to see myself and acknowledge I was doing the best with what I was armed with at the time and hell, that Saturday night roast dinner was pretty damn good.

It is important to share at this point that my mom was originally going to utilize Medical Aid In Dying (M.A.I.D.) and after a lengthy and emotional plan with the Hospice nurse changed her mind a few hours later and decided when she was ready, she would simply stop eating and drinking. The use of “simply” is intentional and if you’re picking up on sarcasm, good, as it was intended. What my mom opted for was termed in the medical community as V.S.E.D. aka voluntary stop eating (and) drinking, which is legal, as it should be, for someone who is terminally ill. My mom had a brief interaction with a gentleman who had chosen this path years before in her work with Hospice as a volunteer, and he had seemingly done so well with it, she figured she could as well. A quick note here before the anger pours forth, I absolutely believe in the concept of V.S.E.D. for those individuals for which it is a good fit. As I also believe wholeheartedly that M.A.I.D. should also always be an option for those facing terminal illnesses. They are very different, but both are equally of value to me as choices, presuming one has done the research, planned and openly and transparently communicated such plan with family and friends in the inner circle at the end. Like any life altering, or in this case ending choice, research and communication is paramount if you truly want a calmer end for yourself and those you love. Unfortunately, my mom had not done the homework, wasn’t even familiar with the acronym V.S.E.D. I was doing all the work I could to better understand what was potentially going to happen, whilst again, trying to respect my mom’s choice. Oh Google I both hate and love you. In this particular case however, it wasn’t just loving Google, it was gratitude. The sheer volume of information and stories shared was not endless, but definitely kept me busy and even now I am grateful for so many vulnerable stories shared as they were like ghosts who kept me company, who understood.

Back to fear. Once I had gone through the mental acrobatics of figuring out where the hell this was coming from, I thought, “ya know, ok, I can ride this out and see what I learn.” So, I worked my way through the next few days. Of course, along the way my husband noticed something was amiss and asked if he had done something wrong. No, absolutely not, I tried to explain, “I’m just going through some weird reliving of moms passing and its uncomfortable and hard.” I mean, I am not trying to diminish what I was going through or my husband’s ability to support me through it, but how do you say to a man, “I am experiencing one of the worst and most terrifying experiences of my life as if it is all happening over again, only this time not only am I sober, but,  I have no defenses up and it really scares me and I want to crawl under the covers for the next 11 days?” Men as we all know, tend to be “fixers.” It is how they are wired and there was no fixing to be done. So I tried to be honest but minimized the level of hurt I was experiencing because I knew I needed my energy to get through it and I wasn’t nearly ready to explain it and I didn’t have the energy for both. Back when this occurred, I had only gotten my Autism diagnosis 5 months before and was still trying to process that as well. The fear I was feeling wasn’t even so much about my mom dying, death is not something I fear, it was the “not-knowing.” No matter how much I had read or imagined, when one stops eating and drinking anything, it can take days, if not weeks for the body to shut down and it is different for everyone. We humans are such a ridiculous bunch of animals. Someone long, long ago started the rumor that if we can label it or put it in a specific box it is less dangerous or scary. Bullshit. Outside of having ego, we humans have an innate inability to feel comfortable just to let go and trust.

 “Oh, aren’t we superior with our opposable thumbs and our ability to navel-gaze our way through life?”

Despite many of our proclamations of believing in a higher power, whatever we may name and/or call it, we remain stubborn animals who think we know best. The arrogance. I have a hope that lingers in the lizard part of my brain, that if and when we surrender and let go of thinking we have any control, we will in fact could live more enjoyable lives. Even over the last 11 days I have come to understand that if I was able to go back to that first day and whisper to myself, I would not whisper directions or an explanation of why, I would simply give myself a hug and say, “I know you are so scared and that is appropriate, and although it doesn’t feel like it at the moment, you will survive and be ok. Take a deep breath and try to remain present, so you can remember the good parts and cry at the sad ones”. I most likely would have told “whisper me” to fuck off, but it brings me a token of calm being able to see it clearer now.

Grief is for all our collective research & experience one of the hardest emotions to navigate whilst it is occurring, because it refuses to be caged to one zone in our being. There is the sheer sadness it brings to not only our minds, but our bodies as well. This particular round the physical lethargy was huge. I am naturally a high energy person, so unless sick, it always throws me when emotion is strong enough to make me feel, well, exhausted. Like my shoes are filled with cement. That someone has placed an invisible wet blanket over my shoulders that refuses to dry. The usual rainbows and silliness that dominate my brain space are hidden behind black clouds. Once the slightest sign of energy peaks out, the hallway before me lengthens, as it does in so many horror movies I have enjoyed, making everything seem just out of reach. Like a weird sort of autopilot has been engaged and I wonder who pushed the button. When I allow myself to focus on those days 2-years-ago, I now hear what my brain wouldn’t allow me to hear then.

“What if I fuck this up? Is she in pain? Can she hear me? (on day 6 she was no longer able to communicate) Doe she hurt when I am bathing her? Is she dreaming? Is she disappointed in my care? Why did she share things with me in her last speaking days that I can no more unhear than share with another? Is she even here anymore or is she with my dad now? Or Bella & Daisy, her beloved dogs who also passed last year? How often do I give her morphine? How do I know if it is enough? Will I ever sleep again? Why am I coughing so much? (From day 1 of the 11 days I started coughing out of nowhere, deep mucus producing coughs like my mom and it stopped 2 hours after she died). Why does it hurt to breathe? Mom, how could you choose this over a faster, less painful option? How could you be so concerned you might vomit and embarrass yourself, when death was the end result no matter what? How could you do this to your only child? How could you do this to me? How could you FUCKING DO THIS TO ME??? Even now as I type the scream inside my head that I have not allowed out, it grows louder. How could you bring me into this fucked up world and then be such a coward? HOW CAN YOU LEAVE ME ALONE IN A WORLD I HAVE NEVER FELT SAFE IN AND NEVER WOULD I HAVE CHOSEN GIVEN THE CHOICE? Yes. This is 5-year-old me still very much alive and well deep inside, remembering being torn away from family and friends when we left Canada as you and dad ran away from your families. It's not fair. Like it wasn’t fair when my marriage was failing and you left me to move to Florida, leaving me on the west coast with no family and feeling so God damned alone. That little 5-year-old inside who now has finally said out loud what she needed to, feels a little calmer. 53-year-old me is crying her eyes out. Embarrassed by 5-year-old her. Relieved, she finally said it out loud. Feeling empowered that her rage and confusion has been given a voice, she feels heard. She whispers to me that although we both live in the same body, we are not the same person. It is ok that I did what I needed to, in order to survive the experience. The sharp pain will lessen with time. Shame no longer tries to enter the room as without giving her oxygen, she knows she cannot survive here and slinks back to the shadows awaiting the next opportunity to wreak havoc. 5-year-old me runs off to play and awaits my joining her later to see what shenanigans we can come up with. She knows she is safe with me.

Of course, what I also realize today, after 2 long years of growth and getting to know who I, Christy Anne, actually am, rather, who I am becoming, is that I have begun the process of growing something that 5-year-old me never had: self-worth. So, there is no confusion, I harbor no blame towards my parents on that front as I know in my heart, they were in fact doing the best with what they were armed with. All they wished for me was a good and safe life filled with happiness. I have even begun to forgive myself for not realizing so many years ago that I was missing that vital part of my life: self-worth. See she has become the first seed I am truly planting with intention. Armed with an Autism diagnosis that is no one’s fault, simply a part of who I am. Embracing that it empowers me with what I view as true super powers: honesty, integrity, boundless energy and creativity and superb pattern recognition which does in fact help me to navigate the world, and an innocence of spirit that has allowed me to hold onto my child-like whimsy, my dreams and my belief that hope is possible, especially when fed on a regular basis. It is now 12:53 p.m. My mom died 2 years ago, just over an hour ago and despite being utterly exhausted from the last 11 days, through a lot of tears I can honestly say I am still angry at my mom’s choice and that is my right. But I am also filled with a lifetime of memories on an incredibly kind woman, who wanted little more than to have a family of her own, who taught me above all else, that kindness was never a weakness and it is our job in this life to keep hope alive. I also know that if I do ever come across a time machine, that the one thing I will do is go back in time to when my mom was a 5-year-old and give her some of my strength, so she could have had the courage perhaps, to not just end her life on her terms, but without the fear of being embarrassed or judged for her choice, or creating more damage on the way home.