How is it possible to survive the impossible? I have been thinking. Shit happens. When it happens, survival seems impossible. Lots of people have been through stuff that is in difficulty far beyond anything I have been through. While I don’t deny that is true, it is irrelevant. Our pain is what is relevant. Someone else’s situation may be much more tragic than ours when measured objectively from a distance. Yes, whatever it is that we are going through, it could be worse. So what? We still need to figure out some way to get through it. It is our shit.Again, I ask: How is it possible to survive the impossible? I cannot give an answer that is definitive for everyone for all time. I can only describe what I did to survive my experience of the impossible. At this moment, as I write, I am feeling shame that this is so woefully self-centered as if I was the only one who faced the impossible. Mary Ann faced the impossible. Her impossible situation looked far different from her perspective. She survived the impossible for over twenty-three years. I cannot tell you how she did it. I will never understand the brute strength and resolve that kept her from giving up. About two weeks before she died, it appeared that she simply decided it was time. She stopped eating and drinking. She left on her terms. Whatever one’s understanding of death and what follows, she survived the impossible.
I cannot tell you how she did it. I can only tell you what I did. The first thing I did and the most important thing I did was to survive. When things were impossible that was all I could do. I just didn’t stop doing something, anything, to survive. Even in the face of the impossible, there was something I could do. Figuring out what that was took every ounce of energy, creativity, mental calculations, and resources I could muster. That is all I could do. I could not fix the situation, I could not fix Mary Ann. I could only do something, anything, no matter how small it might be or how inadequate in the face of the magnitude of the situation.
In addition to that relentless will to survive, what made the difference in the quality of that survival was writing almost every night for the last almost two years of our life together. I wrote a post of 1000 to 1500 words as soon as Mary Ann was settled in bed. Most nights there was an hour or two right after I got her changed and into bed before she became restless and agitated. I wrote during that time. I think there are five hundred some posts on the blog I wrote then (thecaregivercalling.com). In those posts I described what had happened that day in great detail, too much detail to make for good reading. When I wrote, I gained some perspective on what had happened. It may have been an impossible day, but by that time it was apparent that I had survived the day. The writing shaped my experience. Just surviving became, instead, really living. I chose to drop any pretense and expose my vulnerabilities as I wrote. That allowed me to actually grow and change as a person rather than clinging to pretense, some artificial image of who I should be.
As I look back, I can see some of the reasons survival was possible:
A Dedication: The survival I will now describe could not have happened as it did without many dozens of volunteer Rescuers coming to the house in two or three hour shifts for the last eight working years before I retired to do full time care. I can never repay these people.
First: I never wasted time blaming God or the Universe or whatever, as if somehow we were owed better. Stuff happens. I did not have enough psychic or emotional or physical energy to waste it on determining why it was happening, whom to blame.
Next: I chose to accept each decline and each improvement in the ride on our roller coaster as quickly as possible, name it our new normal, and get on with the task of accommodating to it.
Next: We did not give away to any of the medical specialists full responsibility for making decisions in her medical care. I emailed questions before appointments with the Neurologist. I treated the doctors and other medical professionals with respect, but never accepted specific interventions without question. I became an expert at least on Mary Ann’s expression of Parkinson’s disease and Lewy Body Dementia. I had to be very assertive at times, but most of the time I was treated with respect. I served as Mary Ann’s Advocate. She always had final say in her treatments.
Next: Mary Ann retained her dignity and would not tolerate any condescension by people assuming that she was less than a whole person. I knew better than to treat her as anything other than my wife. She was never a poor and helpless invalid, no matter how debilitated she might be at any moment.
Next: The caregiving tasks that I did, including those associated with what went into her alimentary canal when she could not negotiate by herself getting the food to her mouth to what came out of that canal whenever and in whatever form, became my central purpose. I had the honor of being entrusted with those tasks. I could actually make a difference in the life of another human, one that I loved and promised to love no matter the circumstances. I got to keep that promise to the very end.
Next: I recognized that what I was doing for her, I was actually doing for me. She taught me what it means to love someone. I could not resent her for needing my help because responding to that need was fulfilling me, making me more into a person I could respect. Please understand, I often failed miserably in giving her the kindness she deserved. I was frustrated and angry at times. I developed no illusions about being noble or heroic. I did not do all that I should have done. I have to accept that. She gave me the gift of some soft kisses one time standing in the kitchen when she as still able to do so. When she was almost completely unresponsive in the days before she died, I said, “You know that I love you.” She responded, “Yes.” Those gifts have been profoundly reassuring to me.
Next: As wonderful as my life appears now as I wander for months at a time in other countries, carrying my backpack, staying in hostels, meeting fascinating people everywhere I go, it will never measure up to the quality of life, the sense of purpose that filled the last years with Mary Ann. I remember writing in one of those hundreds of posts during the last year and a half that I did not feel as if I was missing something in life due to our circumstances. We were living life from edge to edge, all of life, every moment. Nothing more was needed to be fulfilled. We did everything that circumstances would allow. We even pushed those limits. We did not ask permission, we just did everything that seemed possible to us.
Finally: In doing everything possible, we lived through the impossible. Mary Ann ended the battle with dignity. I remember marveling as she lay on the bed those last days how beautiful her face looked. Other than when we tried to turn her a bit, she was not agitated and did not appear to be in distress, no breathing issues. When the time came, she just left.
The pain of grief was excruciating at first. I chose to lean into the pain rather than try to avoid it. I went through it rather than around it. That way I received the gifts that the grief had to give. There is a gentleness about the grief now. My quality of life has expanded by embracing feelings without fear.
I have no regrets. I can write this feeling at peace with the life we lived together. I now have a life full of new experiences, new possibilities. I am thrilled and exhilarated with the wonder of it all. I am free to take risks, to relate to people openly and allow connections to emerge. I still feel lonely sometimes, afraid sometimes, sad sometimes, but alive, fully alive. Nothing can match the importance of what Mary Ann and I did together. My hope now is that when I meet someone, listen to their story and tell them mine, we are both better for having been connected if only for a time. That hope is what gives me purpose now.