January 08, 2020

Overboard & Adrift: On Life & Navigating Grief

Yeah, I'm here again. I know. It's been a long time, hasn't it? Let me tell you, it's felt even longer. But, at the same time, I also cannot believe how quickly that time seems to have flown? If you're here reading this... wow! Thank you. Thank you for hanging in there. If patience is a virtue, then sainthood may be awaiting you at this juncture. You've obviously stopped polishing your halo long enough to check in and I'm both amazed and profoundly appreciative. I'm feeling more than a little rusty at all of this, now, so we'll see how well I do. And I'll thank you in advance if this post darts and rambles. But, be prepared. A long absence has generated quite a long post in order to catch y'all up to speed. Buckle up.

Looking at my last post back in March of 2015, I was moving toward what would have been the one-year mark of my mother having to be placed in a memory care facility after her Alzheimer's diagnosis. It felt so surreal at that time. And that overall feeling hasn't stopped.

Since then, much has changed. My sister and I, after our dad announced he'd listed our family home with a real estate agent, packed up and sold the place we'd grown up in and moved him into a new home. Within a few months, he became increasingly dissatisfied with his new living situation and we became increasingly aware that he was having his own problems with dementia. So, I listed that place with a real estate agent, packed up once again, and moved him to be closer to me so I could both take care of him and find better, less apathetic, medical providers to assess and diagnose the situation. He was eventually diagnosed with mixed Alzheimer's with vascular dementia. So, now, we had both parents in the throes of Alzheimer's at the same time. 

I spent just shy of a year being his daily caregiver while also maintaining a full-time job and handling a hefty load of legal paperwork for my mom. His decline was much quicker than our mom's and I experienced the pain of my dad forgetting that I was his son. (Miraculously, my mom always seemed to know who I was.) The point came where we finally had to have him admitted into a facility, as well. Then, I had to get to work finding a new home for his dog, Lily, sorting and dispensing the last vestiges of my parents' belongings, and selling that house. 

The first facility my sister found for our dad was good but did little to relieve us from feeling the burden of constant care. God love my sister who dealt with constant messages from the staff about how to do things they were getting paid, in theory, to take off of our shoulders. This, ultimately, led us to moving both of our parents into one facility where they could at least be together. (Somehow they both remembered each other!?!) And, thank God, that place provided us all with a pretty soft place to land under such painful circumstances. Then, in June of 2018, we lost our dad which was devastating. Followed by our uncle, my dad's brother, a couple of months later. I fell down several stairs and sprained my ankle just a couple days before we found ourselves having to say goodbye to our sweet pup, Fergus, at the beginning of that December. Followed by our mom passing away just this past May. Followed, yet again, by our cat, Winston, in July. As you can see, it's been a lot. A. LOT. And, truth be told, I am exhausted. Profoundly exhausted. Like, get me to a cabin in the woods where no one can find me for the next ten years exhausted.

I still can scarcely believe that my sister and I are now living life without our parents. I dream about them, I talk to them, and I still have moments of planning my drive to go down to visit them only to have reality come into immediate, sharp, and painful focus. I'm walking in a mental fog the vast majority of days and engaging in exhausting rounds of "fake it to make it" to try and get by wherever it feels necessary – even where it probably isn't necessary. I'll leave interactions and conversations where I didn't even realize I was flying on autopilot until everyone has already deplaned.

These years have put us through the wringer. But I would be remiss not to mention the extraordinary moments of grace that have lined this enormously punishing path that fell before us. Honestly, I feel I've witnessed a multitude of miracles along the way. I still don't know how everything fell into place that needed to but I am deeply grateful that they did somehow. That said, it has also been an incredibly isolating experience. Of course, if you haven't been through similar circumstances it's difficult to really understand but there have been so many instances that have left me, well, gobsmacked with people.

I see our culture as woefully inept at handling truly life-challenging difficulties, death, and grief. And, because of this, in the midst of heartbreaking struggle I have found myself largely volleyed between peoples' avoidance or apathy over these past years. I get it, when shit really hits the fan, we get flummoxed by what to say or scared of saying the wrong thing. But when those moments have come up and people around me opted for silence instead, it left me feeling utterly alone in the company of others. People either wouldn't give me the space or opportunity to talk about my grief or they'd treat excruciating experiences with a checked "to do" list box, moving on, it's all behind you now kind of attitude. Neither of which offered any kind of solace or comfort.

For many of those witnessing grief, they set about hoping they’ll find the perfect thing to say (highly unlikely – and that’s okay), hope that someone else will step in to help ease (and, thus, allow them to avoid) the discomforting presence of grief, or work to get the grieving back to their “old self” (not possible) and do what they can to make us “happy” again. While I know people mean well, the efforts to get me to be "happy" or "like [my] old self again" weigh down on me with such a hefty possibility of disappointment. People want to fix the grieving because we tend to see grief as a problem requiring a solution. Grief is not a problem, it’s a process. But, problematically, it’s not expedient and pretty like the things to which we give utmost reverence in our society these days. And it’s far more likely to be a process of years not days, weeks, or months. 

Culturally, we’ve bought into and perpetuate the expectation that grief should be done quickly, systematically, and largely in private. We qualify, quantify and compare grief all in an effort to both diminish and distance ourselves from it. We calculate the grieving period by the “5 stages of grief” which, by the way, are total and utter bullshit. Seriously, throw that useless measuring stick in the trash. It’s complete garbage. Grief is a long and arduous road. One with some amazing new vistas found along the way, to be sure, but also riddled with washouts and potholes and the GPS range for navigation assistance is limited at best. 

As I stated to a friend once, it's like being surrounded by a thick-walled glass box – you can see me but there is a barrier separating me from others. And, man, do I feel it. Even now, I feel removed and living life as if breathing through a wet blanket sometimes. My perspectives on things have drastically shifted, changed, and solidified into such a new framework that I almost feel like I don't understand the world anymore. We sail such familiar seas that we can scarcely imagine the thought of falling overboard, adrift on waters we've never known. It's as if I'd gone to sleep in the familiar and woke up in a new country with no knowledge of the customs or language. And it is incredibly disorienting, to say the least.

Seem complicated? It is. Grief is complicated. People think it’s sad. It isn’t. It’s so much more. Frankly, grief is also really fucking angry. And sad. And sometimes funny. Fine this week/month/year, devastated the next. And sometimes it’s so painful and deeply irritating that it seems almost reasonable to start tearing away at your own flesh in hopes you might actually be able to just crawl your way right out of it. And, to top it off, it’s different for every individual learning how to carry the weight of grief for the rest of their lives. I know, fun times. Is it any wonder, then, that grief is also enormously lonely. 

God, to say I feel lonely sometimes doesn't begin to touch upon it. But I'm not lonely for social engagement or polite company. It's something much more than that as spending time alone can be enormously relieving. But it's as if I no longer speak the same language as everyone else around me. They talk and I can't really take it in. I talk and no one knows what the hell I'm saying. And, really, I suppose there is no language to convey any type of understanding until such time as the Grim Reaper places his first stamp in your passport.

For those of us grieving, we try to figure out how to get about the business of living “normally” again, “moving on”, “getting over it”, and back to savoring a riveting conversation about what we’re all watching on television or how incredibly sad it was that the tile wanted for a backsplash has been discontinued (all while trying to avoid bursting out with a riotous “Who fucking cares?!”). There is the navigation through conversations which will exclaim dismay that you’re still grieving or, one of my favorites, “I just don’t understand!?!” And not expressed in such a way as to be taking stock of one’s own lack of knowledge or experience but, rather, in a way that you’re not making yourself understood. As if the onus should be on the grieving to now take up the arduous task of instructing someone who doesn’t get it into full comprehension of the nebulous mass that is grief. I mean, Jesus Christ. Tone deaf, much? (We have a lot of empathy and/or emotional intelligence work to do out there, people. Lemme tell ya.)

In the same way people want to avoid grief and, by association, the grieving, the grief-stricken – myself, at any rate – can be perfectly content to also avoid people who want to fix it, distract from it, or wish it away. Which, for the record, feels like damn near everybody. While few people have allowed or offered me the space to talk about or be in my grief, at least I get an hour every week or so with my godsend of a therapist and then go back to trying to suck it all up on the surface and keeping people comfortable. It sucks. I get it, it’s hard and uncomfortable. And it’s that way for everyone on all sides, I know. It all just fucking sucks.
As the holidays approached, I could feel the gloom of grief circling with the raw poignancy that is so common during that time of year for those who have experienced immense loss. Invitations to this or that gathering begin to come in which, on the surface, sound appealing but, in reality, are anything but. It’s all weighty and requires so much consideration. Will I really be up for it? Can I fake it for a few hours if I’m not? Who will be there? How many? I wonder if I shouldn’t drink? Will I feel pressured to drink? Will I bum people out by being the party pooper? What if I drink too much? God, what if I lose it and start crying? Or worse?! As one might imagine, saying “no, thank you” feels infinitely easier and quite possibly better for all concerned. But, one has to wonder, how long can one say “no, thank you” to friends before the invitations stop altogether? How long can a spouse or partner be expected to attend yet another social engagement alone before losing patience and understanding? How long before a period of loneliness becomes a situation of actual isolation? And, thus, the slide down the other side of Mt. St. Grief proceeds.

Here’s the thing, for the grieving all we can ask for is your patience. Sometimes we may need distance – without requiring an explanation or justification. Other times, we may need the support of your company in a way that allows us to be quiet or talkative or raw or whatever but, always, wholly unfixable. Feel free to ask questions – please ask questions. You don’t need to say or do the perfect thing. Really. But don’t try and fix us either. Really. And, I'm telling you, don't find yourself dismissing our grief or pushing it aside for us to prop you up. Really. Just let us exist in the pure openness of where we happen to be. We are exhausted, sad, angry, hopeless, hopeful, fragile, and fierce. Be gentle. Check in, touch base, and reach out but without any expectation other than to clearly convey, “I’m here. I’m still here.” We haven’t forgotten you, we still love you, but we need to focus on righting our own ship now and learning to find our way by navigating the stars in this newly unfolded night sky. Not just finding our way back to you but to ourselves – our new selves that have washed up on completely different shores with new territory to explore and to which we’ll need to learn to adapt. We’ll get there. I’ll get there. Eventually. Hopefully. And, with any luck, we hope you might meet us there, too.

** If you or someone you know is dealing with grief – and you, too, will be one or both at some point in your life – I sincerely recommend the book "It's OK That You're Not OK: Meeting Grief and Loss in a Culture That Doesn't Understand” by Megan Devine. It is the best I’ve encountered so far. And it’s good for those on both sides of the grief spectrum as she also has chapters devoted to those trying to care for grieving people. I happened to listen to the audio version read by the author who, fortunately, has a wonderfully soothing and reassuring voice. I'd also suggest checking out Francis Weller whom I found incredibly helpful with his insights on grief and mourning. I also recently learned about a website called www.modernloss.com that is said to be taking a stab at redefining mourning. Cool. I’ve not really had a chance to review it but am optimistic and most curious. **

(Note: None of those links above are affiliate links. They are offered purely as helpful recommendations.)

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