I hate the smell of tears. This has been a hard week. I have had what I refer to as PTSD episodes where I find it extremely difficult to move past a traumatic memory when it crosses my mind. All the memories of the week of Tyrel’s death have been knocking this week. Acupuncture eases it, but it’s still there. I suspect enough time has gone by that my brain thinks I’m ready for another layer of healing to be peeled back, like an onion. I think my brain doesn’t know a fucking thing. The triggers have been things like a dream I had about Tyrel pretending to be dead, my son’s mannerisms starting to really resemble Tyrel’s to a tee, my daughter’s sleeping face looking eerily like her daddy’s the last time I saw it…cold and lifeless. It’s disturbing, I will not minimize that.
Tonight I was watching a documentary about Steve Gleason (called Gleason on AmazonPrime). He has ALS and is slowly dying. His wife gently and lovingly cares for him as he loses more and more of his ability to function over the course of a few years. I burst into tears during one scene when his wife is stroking his head…and I cannot help but wish that Tyrel’s disease was more outright and tangible. I think the biggest struggle with depression, anxiety, mood disorders, etc. is that it is a disease of isolation. It isn’t seen. It doesn’t show up on tests. Diagnosis is a hit or miss. There isn’t one protocol for therapy, and there’s no cure. And it is not just simply difficult and taxing on the loved ones around the person with the disease, it’s destructive. The person is expected to act and live to a certain standard because they physically appear to be able, and that creates such a frustration and anger for them, because every day is such a battle. To maintain stability. To give the perception of normal. To continue to function, provide, engage, support, socialize. It’s absolutely exhausting. But loved ones don’t see that and the one carrying the burden can’t and often doesn’t know how to explain what has always been simply, their way of life.
As much as Tyrel feared being in a vegetative state due to an illness or accident, after watching this documentary, I’m thinking, “Well at least this guy’s family was able to hold him, and cuddle up to him in bed and feel his breath and touch his body near the end.” When Tyrel was dying, he seemed so normal. He woke up, drank coffee, went to work, came home, played with the kids, ate dinner as a family, watched football, played multiple sports on a weekly basis, etc…But his days were numbered and living was a challenge. He had to keep up the image of “stable.” He had to cover his disease so he wouldn’t be judged, scorned, and worst of all…pitied. Oh, how that man loathed to be pitied. Because he was strong and able. But the whole clusterfuck of life vs. his mind isolated him. And in the isolation, the anger grew. Understandably. Unfortunately, I was his number one target. I loved him so much, but it became such a destructive environment, even I had to walk away.
From that point on, it was a free fall for Tyrel. His days came faster and ended quicker. And he wouldn’t let me so much as speak to him, let alone hold his hand through it. This absolutely crushed my heart. I would cry my eyes out, because I knew we were losing him, and all I wanted to do was show him he wasn’t alone. But his disease isolated him. There was no room for vulnerable support with all the anger from the battle he fought alone for as long as he could remember.
So, all I have to say tonight, through these stupid, smelly tears and the absolutely horrific side of this story I continue to live is this…
Be thankful. Love others. Hold your people tight. Choose to see the good and get the fuck over the petty. And most of all…let others in.
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