Maggie and Thomas,
This is the ride I signed up for; that I knew it was coming, and yet, it is still unfamiliar and passes through a canyon of death who provides echoes of the past that sweep over me as I ride through.
Late on the evening of July 4th, 2014 I asked Paula to be my wife. They set off fireworks to celebrate the event and they have on the anniversary of that date ever since. As we navigated what our wedding was going to look like and how we were going to pay for it, we needed to have a conversation with her folks where Paula got really vulnerable. Some of my first impressions of her Mom weren’t great; she was the power broker in the family. She was used to getting her way and dictating what was said and unsaid -- even what her family was allowed to feel. The day we had that conversation with her folks was the day my relationship with Char forever changed.
I don’t remember exactly what was said, but Paula's fears of the conversation materialized and she began to cry, racing from the room in tears. This made Char really uncomfortable and she demanded that Pabs stop crying. At that moment I did something she wasn't used to. I kindly but not nicely stepped in and spoke to Char in ways I’m pretty sure no one ever dared to speak to her. I loved her but also stopped her, putting up a boundary that needed to be erected, protecting my fiancé from the vitriol that never should have been uttered. Simultaneously, I made sure that Char knew I loved her, but what she was doing, saying and demanding was not OK. Without shaming her, I made certain she knew she was wrong. From that moment on, Char and I became besties.If I could lovingly stand up to her, I could create a safe space for her daughter to thrive.
How I grew to love that woman! We learned to laugh together and I loved to tease her. She always tried to tease me back and loved the playful banter we shared. I knew she was losing her marbles. All the signs were there. I had been here before. This was different but familiar all at the same time. I traveled a similar road with Gramgee when she transversed the Alzheimer’s plain. I already knew many of the tricks, and I quickly relearned them as Paula learned how to distract, and redirect; crack a joke and make Mom laugh.
These days, I try to get to see her between appointments; she is just up the street from my office, about a four-minute ride. It has gotten harder and harder though as she sinks lower and lower, disappearing into a pit of despair.
To her, I’m not nearly as funny as I once was, and she can’t understand why I simply don’t take her home to be with her pets. Her confusion is no longer simply forgetfulness, rather it is delusion and hallucination. She is living in a world crafted in the ecosystem of her anxiety and shame. This is a cycle of life I wish didn’t exist.
Our medical advances help us stay alive while internally we fade and die. We breathe too long these breaths of death that merely fill us with hopeless dread.
Two days ago, as I visited Mom, the TV droned on in the background and as usual COVID 19 was on the tongues of the talking heads. Mamma’s comment was, “I wish I could catch that.” She is so ready to be done. She is ready to find a resurrected life somewhere other than here where she isn't confined to a chair or a bed; where her memory doesn't desert her and leave her forlorn.
Bearing witness to Char is only part of the journey for me though, I also get to watch my wife wriggle in discomfort that refuses to let her go. She loses thoughts and ideas under the duress of having to grieve and heroically carry the weight of her parents’ journeys. She has sat with her Mom in the Pit of Despair for so long, that the despair has invaded her -- soul-sucking the light from her eyes.
This beloved wife of mine can find no respite. There is nowhere for her to run, nowhere to hide and escape. There is no drug that can make her well. There is no safety from the onslaught of a loved-one's slow and torturous death. I can’t lift the veil. Doing so would break the sacredness of her journey, so for now, I too have to grieve the temporary loss of my partner and friend.
Oh, don’t get me wrong, we find moments of joy together along the way. We are too good of friends for those to be taken from us. We function and make it through, but this journey my wife is on, though sacred, is taking her to the very gates of hell, and it is a slow burn. That burning of her heart sears my soul as well. These are painful days.
This is why I hope to go out on the back of my bike. But then again, your Gramgee told me that her greatest fear was Alzheimer's and it ended up being God’s good gift to her. I don’t want to be kept alive. If I wander off to die alone in the wilderness, please let me go, it would be a kinder death.
Though I have no intention of leaving the planet anytime soon; there is still too much life I want to live with Pabs and with you; I’ve been ready to go for a long time now. It feels like I’ve done what I was placed here to do and from here on out it is all gravy. It feels good to be at peace with my soul, with my God, and with His creation. It feels good to not have regrets and to be free to love and live without fear of messing up the future. It is a place in life I hope and pray you discover early in your lives and enjoy for as long as possible, for it feels like this is what we were created for. It is not free of pain, as you can see. Right now, life hurts like hell most of the day — but it is good and it is rich, and it is full, and it has meaning.
I think the reason Gigi’s and Miggy’s journeys are so hard to witness is it feels as if their meaning is being ripped from them. I think that is my fear for the end of my life — that meaning would be ripped from my chest and stolen from me. I have to choose to believe that what appears to be the case isn’t; that their lives and the number of heartbeats God has given them is pre-ordained and held in His hand. It is hard to believe some days… like today.
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