It doesn’t happen very often, but occasionally I look around, I think of Marty’s brokenness, I focus on what was and what is now and I get angry, I get pissed, I feel completely imprisoned by my life and I scream in my mind, “What the hell am I doing and how did I get here?”
I’m not proud of these moments, these feelings, but I can’t, I won’t deny them, they are very real, serious feelings that at infrequent times define me. The anger, the feelings of profound frustration are not focused on anyone, not me, not Marty, it is all about the disease, it is all about the results of the disease, it is all about the loss, it is all about the missed moments of my life with my wife.
Marty and I are at a stage in our life where we should be able to enjoy and reap the fruits of our years of labor and saving. We have the financial means to do things, to enjoy things, to see things, to dance on the deck of ship, to drink wine in a valley, to see the masters at the Louvre, to wade in the ocean with our children and grandchildren. The disease makes all of those things, those dreams, stay just that, dreams of the past.
The losses often seem endless and the barriers to do the simplest things seem insurmountable. Almost everything is exponentially harder to do; getting up and going to church, having dinner out at a favorite restaurant, or going to visit friends is often so hard as to deter doing any of it. Doing anything quickly or spontaneously just doesn’t happen, what we do requires advance plotting and planning to care for Marty’s needs. You can’t just go anywhere because of the wheelchair or Marty’s limited capabilities. What we do, when we do it is always constricted by this damn disease.
Then there is the isolation, the feeling of being alone in a fortress. As someone who is comfortable with solitude I never thought I would feel isolated, alone. I hate the feeling of being alone and it’s an unfortunate but a real part of caring for someone with a long-term, debilitating disease. It just happens, the disease, the recovery from the disease, the caring for the sick becomes the obsession, focus and the driver of your life and you use the disease to help build a wall around your life to create a fortress. There’s not enough bandwidth to deal with the outside world and what lies ahead.
How about what’s ahead, what the future holds? I try and stay away from the future, it’s always too overwhelming. The reality is that sooner or later the repercussions of the strokes will overwhelm Marty’s systems and take her away from me, take away my obsession. Being alone, aging alone is part of the future I avoid. Its part of what the anger is about, it’s the worst part of these strokes, the only way to be truly free of this disease, the only way for me to erase the disability, the only way for me to live a different life is for the love of my life, my wife, to be done. Then I get to be old and completely alone, so yes, it pisses me off.
Then, like the cherry on the sundae, I hit myself with a little guilt for recognizing and railing about the curses of our lives. It’s not right to be angry at loss when you have so much good in your life, it’s ungrateful, it’s self-pity, it’s whiney, it’s ignoring blessings, it’s unbecoming, uncool, and pathetic. One shouldn’t just focus on the loss, one should only focus on what is good, that’s what the strong and stable do, they persevere, they march through the rain, smiling.
I swear I know how fortunate I am to have had the time to become reacquainted with Marty. I swear I understand the blessings of our marriage and how Marty has made me a better man, a better human. I swear I know we are lucky to be able to live and carry on and see our grandchildren born. I know we are blessed to have such a wonderful supporting family and cast of characters around us. I got that, I really do, I still get mad as hell at the disease and its cost on Marty and me.
I do that a lot, recognizing our blessings, but occasionally, when I look around and see the couple walking down the sidewalk, or when I see a man and woman walk effortlessly into a diner, or when I see a couple gliding across a dance floor I mourn what was and will never be again. Then, because it’s what we all do, because it’s how humans do it, I move on and say thank you God for keeping her here with me.