As the clock ticks away this year, I am still looking for a phrase or a concept that would allow me to define its meaning, a way to talk about beyond the taxonomy of repeating the entries of my daybook listing appointments, travel, things to do, projects to finish, people to call… this is just what I’ve lived through, the actions that occupied my time and were plotted in my calendar. 2007 has something more to give, a meaning that I can’t see, probably because I am too close to it to be able to gain perspective. One thing I can say is that it was a continuation of the demolition of my old self that started the year before.
In 2007, sometimes I witnessed of the transformation of my beliefs, my dreams, the very definition of the man who answers to my own name. It is as if somehow what I was living vicariously through Jan, inexplicably became my own existence. Jan was the one with the aneurysm; she is the one who underwent surgery; she is the one struggling with aphasia, I was just the observer…or was I? In the past twelve months I have reviewed my definition of reality. I don’t’ see the process any longer as if I was observing from the other side the looking glass. Jan’s aneurysm was also mine, as much as her struggle with aphasia this year is also mine.
What does the Bible mean when it says that a man and a woman become one? Is it a comment on the sexuality of the relationship? or, does it refer to the children they beget? or is it a process whereby two individuals begin to dissolve their boundaries to the point where there is one shared psyche through which common dreams, visions, communication and life can be expressed and experienced as one? The believers of the “revolving door” theory of marriage insist that we remain individuals for life, enjoying the conveniences and good feeling marriage can bring as long as it lasts. Perhaps this is how I thought before, having myself participated in the dissolution of a marriage. Bt this time I find myself dealing with a different matrix, and different parameters I have to use to define reality. And this is where the change of my essence is taking place.
In 2005, when Jan and I decided to marry, I told myself to mean what I said and say only what I meant to do. So, I pledged her my love, my company, my words, my support regardless of her circumstances, not knowing that soon I would have a chance to test my resolution. 22 months after her stroke, I know I had to say that pledge, because it represented a matter of life or death. I could have done what I did before: retract my words, and run away to avoid the inconvenience and pain of going through her lengthy recovery. But I would not have been really living a wholesome life. So, this is what I am beginning to realize in 2007. In staying I realize that my self somehow has become one with hers. She suffers, I suffer too. She becomes frustrated with the communication difficulties of an injured brain, I do too. She feels like a portion of her self has been severed, and that she needs to reconstruct those portions of her identity that have been lost. I empathize and in a strange way, I find missing parts in my own self; I too had to rebuild a new definition of what it means to be a husband, a companion, a support for Jan and a person for myself.
A few more days and 2007 will be over. In retrospect, I choose to see blessings amidst the challenges. It has not been an easy path. Some days we both scream for a way out, for space between us, for more clarity in our communications. The sunshine of many days was obscured with our tears of frustration with a system that cannot see her as a person, of impatience for not being able to speed up the recovery, of impotence for not being able to reduce her pain. However, even in those days we have seen rainbows through the tears. We still love each other. We still are together. Jan continues to make improvements, ever so small, everyday. We still hold each other in the good days and wait together for the bad days to end. We are taking the risk of increasing her quality of life by stopping her anticonvulsant medication.
2007 is a year of change. I have changed my optics and definitions about life and suffering. She has changed her understanding of commitment and fear of intimacy. We have lived in two years a life share of pain, and we can say with hope that we know there will be one day when she will be fully back.
2007 was a year that demanded an incredible amount of courage and strength. Jan and I didn’t have it all the time. In those dark times when we found ourselves with no strength, resources or vision, it was all of our dear friends and families that carried us to safe port. We thank God for all of you and we thank you.
2008 is a blank page. We want to fill every days of it with a celebration of hope, compassion and truth.
FC
Friday, December 28, 2007
Thursday, December 06, 2007
the unsinkable Janita Waltonski
She has done it again!
Against all odds, diagnosis, prognosis, prescriptions, therapies and experiments, she has decided that the best definition of health is her own and the best path is what she decides is best for herself. No suprise here for those with a long acquaintance with Jan. She just found herself beyond the end of the rope when one the same answer from the medical establishment came back one too many times: we don't know what causes such strong reactions to the drug therapy. You need to continue trying new drugs until we find one that will work with you. Easier to say than to do. She was on the 11th tryout, with the same results: drowsiness, difficulty finding words, pain in right side, difficulty understanding, difficulty hearing, reduced vision... if she continued this path, soon she would be like Helen Keller...looking for a miracle worker.
So here she was tonight, bringht and alert, with an unusual energy level, with great clarity in her words, and minimal difficulty finding words, all due to the fact that she decided not to take her pill today. It is a difficult choice: increased risk of seizures or dramatically decreased quality of life.
We went to the last class of a course we have been taking for 10 weeks. Sometimes she attended but had to lie down in one of the couches because of extreme fatigue, also, she could not participate much because she could not find the words... so she would come home frustrated and sad for the losses... she would say that she would rather die if this is the type of life awaiting her under these medications. Tonight she was awake, alert, talkative and walking on water... so to speak.
We don't know where this road is going to take us, we both embrace risks. Tonight we prayed that her brain would be protected from seizures w/o the drugs. It is a journey with no map, but with a strong sense that God is walking right next to us all the way, and that the tender hands of those who love us will be holding ours.
FC
Against all odds, diagnosis, prognosis, prescriptions, therapies and experiments, she has decided that the best definition of health is her own and the best path is what she decides is best for herself. No suprise here for those with a long acquaintance with Jan. She just found herself beyond the end of the rope when one the same answer from the medical establishment came back one too many times: we don't know what causes such strong reactions to the drug therapy. You need to continue trying new drugs until we find one that will work with you. Easier to say than to do. She was on the 11th tryout, with the same results: drowsiness, difficulty finding words, pain in right side, difficulty understanding, difficulty hearing, reduced vision... if she continued this path, soon she would be like Helen Keller...looking for a miracle worker.
So here she was tonight, bringht and alert, with an unusual energy level, with great clarity in her words, and minimal difficulty finding words, all due to the fact that she decided not to take her pill today. It is a difficult choice: increased risk of seizures or dramatically decreased quality of life.
We went to the last class of a course we have been taking for 10 weeks. Sometimes she attended but had to lie down in one of the couches because of extreme fatigue, also, she could not participate much because she could not find the words... so she would come home frustrated and sad for the losses... she would say that she would rather die if this is the type of life awaiting her under these medications. Tonight she was awake, alert, talkative and walking on water... so to speak.
We don't know where this road is going to take us, we both embrace risks. Tonight we prayed that her brain would be protected from seizures w/o the drugs. It is a journey with no map, but with a strong sense that God is walking right next to us all the way, and that the tender hands of those who love us will be holding ours.
FC
Thursday, November 15, 2007
Update
It's been a month since the last blog. Here is the update for those who still read this.
It's Nov. 25 now. Jan continues to make progress in some areas. People who see her once in a while can see the improvements with greater ease than myself or Jan.
She started the 11th medication a couple of weeks ago with the well know struggle with the side effects. We both pray that one day she will just be free from these terrible but useful drugs to control seizures.
Access to neurologists in Toronto is more difficult than getting an audience with the Prime Minister or the Pope. We saw a neurologist at the beginning of November. When we called her secretary to make another appointment, we were told the next available appointment is in June 2008! that's more than 6 months from now. This is what the Minister of Health calls a "good system"! So, in case Jan's struggles become more acute, the only option we have is to go to the emergency room, which costs to the system several times what a regular visit to a specialist costs. Arrrrhhhh! Who is running this province?
Some days are good, I see that Jan moves around and talks almost normally. Other days are more difficult, where I can hardly understand what she is saying. On the difficult days, our communication deteriorates quickly, and the likelihood of conflict is always present. I perceive a hypersensitivity in her to everything I say or do. Almost innevitably, at one moment or another I will be caught off guard and we end in crisis. I say something she takes as criticism or something in the tone of my voice or the expression of my face, anything can trigger an explosve reaction.
These crisis look like this: her voice increases in volume. She starts crying and her words become more scrambled. In less than a minute I hear only incoherent sounds, a single sylable repeated many times, just like when an old CD gets stuck on a scratch or dust. She then will fall to the floor wherever she is and continue her crying lowdly. I've learned to put aside my emotions and look at her safety and comfort. But no matter what I ask or tell her, there is no response. There is no use for explanations. That can only happen after she "comes back". Eventually, the sobbing will stop and she will stay there, on the floor sometimes for a half hour, with no energy left, semi-unconscious, like a rag doll.
I can't describe my feelings when I see her in this condition (sadness, loss, guilt, anger, impotence, or all of tehm at the same time). I feel responsible for all these crisis even though I know I am not. But that is the deal, and this is life in real time. It has a tremendous effect on my psyque. I realize I am struggling with time and a sense of direction more and more these days.
On the bright side.... what side is that?
FC
It's Nov. 25 now. Jan continues to make progress in some areas. People who see her once in a while can see the improvements with greater ease than myself or Jan.
She started the 11th medication a couple of weeks ago with the well know struggle with the side effects. We both pray that one day she will just be free from these terrible but useful drugs to control seizures.
Access to neurologists in Toronto is more difficult than getting an audience with the Prime Minister or the Pope. We saw a neurologist at the beginning of November. When we called her secretary to make another appointment, we were told the next available appointment is in June 2008! that's more than 6 months from now. This is what the Minister of Health calls a "good system"! So, in case Jan's struggles become more acute, the only option we have is to go to the emergency room, which costs to the system several times what a regular visit to a specialist costs. Arrrrhhhh! Who is running this province?
Some days are good, I see that Jan moves around and talks almost normally. Other days are more difficult, where I can hardly understand what she is saying. On the difficult days, our communication deteriorates quickly, and the likelihood of conflict is always present. I perceive a hypersensitivity in her to everything I say or do. Almost innevitably, at one moment or another I will be caught off guard and we end in crisis. I say something she takes as criticism or something in the tone of my voice or the expression of my face, anything can trigger an explosve reaction.
These crisis look like this: her voice increases in volume. She starts crying and her words become more scrambled. In less than a minute I hear only incoherent sounds, a single sylable repeated many times, just like when an old CD gets stuck on a scratch or dust. She then will fall to the floor wherever she is and continue her crying lowdly. I've learned to put aside my emotions and look at her safety and comfort. But no matter what I ask or tell her, there is no response. There is no use for explanations. That can only happen after she "comes back". Eventually, the sobbing will stop and she will stay there, on the floor sometimes for a half hour, with no energy left, semi-unconscious, like a rag doll.
I can't describe my feelings when I see her in this condition (sadness, loss, guilt, anger, impotence, or all of tehm at the same time). I feel responsible for all these crisis even though I know I am not. But that is the deal, and this is life in real time. It has a tremendous effect on my psyque. I realize I am struggling with time and a sense of direction more and more these days.
On the bright side.... what side is that?
FC
Core commitments
Life is an emotional ride.
The ride has been full of emotions. Everyone who knows Jan, knows that one of her essential methods of expressing life is through emotion. Ironically, in this healing stage, emotion seems multiplied. The medication (Jan is now testing her 10th. medication), together with the rebuilding of the neuropaths is creating this effect of magnifying a set of already strong emotions. So, on a clear day, you can see Jan extremely happy, or extremely frustrated, or extremely sad. In between, there are days when in a lethargic state, she will just let things go by.
I don't fit the regular stereotype of a happy Mexican. Somewhow I learned very well to keep my emotions under control and to keep them to myself. So life is not as emotional when i am by myself. Jan bring this to my life. She has plenty of emotions, enough to last for a life time for the two of us. Someone once told me that "she wears her emotions on her sleeve", I find that a very accurate description of her. But, if she wears her emotions so much on the surface, I wonder where do I wear mine? in my socks?
Have these emotions affected our core commitments? Sometimes, in the heat of an emotional outburst, I hear her frustration with my limited ability to be there for her, with my shying away from her need and pain, with my inability to embrace her when she is in pain or feeling dyzzy and confused. Then, I hear her say: I can't go on anymore! When this happens, I struggle in my soul with my own feelings of inadequacy and selfishness.
A recurrent question I ask myself when I am in the dungeon is: what do I expect from a relationship with Jan?
The ride has been full of emotions. Everyone who knows Jan, knows that one of her essential methods of expressing life is through emotion. Ironically, in this healing stage, emotion seems multiplied. The medication (Jan is now testing her 10th. medication), together with the rebuilding of the neuropaths is creating this effect of magnifying a set of already strong emotions. So, on a clear day, you can see Jan extremely happy, or extremely frustrated, or extremely sad. In between, there are days when in a lethargic state, she will just let things go by.
I don't fit the regular stereotype of a happy Mexican. Somewhow I learned very well to keep my emotions under control and to keep them to myself. So life is not as emotional when i am by myself. Jan bring this to my life. She has plenty of emotions, enough to last for a life time for the two of us. Someone once told me that "she wears her emotions on her sleeve", I find that a very accurate description of her. But, if she wears her emotions so much on the surface, I wonder where do I wear mine? in my socks?
Have these emotions affected our core commitments? Sometimes, in the heat of an emotional outburst, I hear her frustration with my limited ability to be there for her, with my shying away from her need and pain, with my inability to embrace her when she is in pain or feeling dyzzy and confused. Then, I hear her say: I can't go on anymore! When this happens, I struggle in my soul with my own feelings of inadequacy and selfishness.
A recurrent question I ask myself when I am in the dungeon is: what do I expect from a relationship with Jan?
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