Monday, November 30, 2009

Helping out

One of the actions that brings me much satisfaction is the opportunity to help others. Jan is the same, she volunteers one day a week in the office of Runnymede United and one day a week with the Saint James Anglican food bank. We have the same values on this area: we are only administrators of what we have. Nothing of what we possess really belong to us. It belongs to God and we have these goods to administer them for the benefit of our immediate family and others. This is our the law of love works. We take care of others and others will take care of us. But in our broken world everyone seems to be looking for themselves,s o many are left without someone to look after them.

I can see this value at the core of what Jan is. Unfortunately, as much as she tries to give, that by itself does not mean that she will receive back the same courtesies or help. It is not a complaint. It is a fact. One area in which this brokenness shows up is in her friends. As time goes by, she counts fewer and fewer friends to visit and to just do what friends do: hang out. Because of this, one of her big struggles is with loneliness.

What are we going to do to fix teh broken law of love? Help out. that's all we can do.


Wednesday, November 25, 2009


When I think of suffering on my side, not taking into account any of Janita's challenges, I think that broken communication tops the rest.

I suffer when I am having a conversation with her and in less than two minutes flat, she is feeling attacked by my questions and I am feeling misunderstood and judged as a careless, insensitive, ignorant, idiot man!

Negotiating everyday decisions that we must make gives me most of the time a great apprehension. I have learned to expect a huge war when we have to discuss various options to an otherwise insignificant issue.

Here is an example:

she: -I need to eat soon! (she suffers from something that looks like hypoglycemia) I need to eat.
me: -OK, I'll prepare some lunch.
she: -I need to call the place where hey sell Christmas trees. I can;t find the number. I need your help.
me: -I'm busy with lunch right now, can we make the call later?
she: -No, I want to make the call now. (She goes and find the phone book and starts looking for the number. A few minutes later she calls me.) I can't find the number! You don't want to help me. I need a man that has compassion and helps me.
me (beginning to feel impatient): -Why can't we wait until after lunch to make the call? Here, let me see the phone book... Here it is! I will call them... (Hello? I would like to know your hours of service...thanks. While I am talking she asks me to get prices... I really hate that someone talks to me while I am on the phone in another conversation, so I selectively tune her out).
she (just a second after I hang up): -I wanted you to ask for the price. I told you four times but you never listen. Why do you hate me so much? Why are you so angry at me? I can't take it anymore!.
me: (without answering her complaint I go the kitchen to make sure nothing is burning, and serve lunch) Lunch is ready! Come and eat. I thought you needed to eat right away! That is what you told me.
She comes and sits in silence with an expression on her face of utter disappointment, almost rage. She takes a couple of spoons of food and stops. Then she says: -I don't why you hate me so much. I asked you four times to get the price. Instead, I had to call. I have aneurysm, I can't talk. It's really hard for me to talk on the phone. It was easy for you to do it, but you hate me and don't want to do anything for me. Now you are silent, You are angry at me for asking you for something.
me: -but...
she: -you see? you interrupted me. You don't care for me.
She starts crying hard. I try to explain that I felt pulled in many directions at the same time. I thought the most important thing was to have lunch ready and then we could make the call...She cries even harder. Suddenly she stands up, throws herself on the floor and continues crying, saying in a loud voice: -Why, why Lord, why is he so hateful? Why he doesn't want to help me?

After a while, I helped her to the sofa. She is unsteady and can't talk. She show the same symptoms as when she has had a seizure. The day is shot. All plans are thrown in the garbage. We will spend the day in painful silence.

I feel guilty for having punched her buttons and make her react this way. I am concerned that she will have a seizure if she does not control her emotions. My confidence gets shaky. I begin to agree with her that probably I am the worst caregiver on the planet, that she would be better of if I disappeared...
I asked myself: What am I doing here? Why do I have to put up with this suffering? I see her suffering and I cannot even help her because mine is overwhelming. What is the use of having two people crippled by pain, uncertainty and a very feeble communication that is made worse by her aphasia? I feel we are in a path of assured mutual destruction, and my mind tells me that this idea is as ludicrous as when Reagan made it policy is the US. I thought I stayed with her because I love her, but clearly she does not see or even hears any of what I do as love. I feel I am at the edge of a pit of despair. Stripped naked of my loving intentions, unable to communicate in a meaningful way with her, without sufficient patience and caring, I am sliding down; a great dark feeling of disappointment, of insufficiency covers my heart and my mind. I escape the only way I know it's the least self-destructive: sleeping.

Suffering for me is the death of my hopes of having a healthy and happy marriage. Suffering is realizing that the woman I married is trapped inside of a body with a broken brain, and that I am no prince or I can't set on a quest that will bring her out of this situation; that her brain will have to do most of the work without my help. I suffer when I realize my inadequacy to help her the way she needs to be helped. I suffer when I see most friends quietly disappearing from her day book. I suffer when I realize I don't have any answers to her questions, nor most of the medical practitioners we have seen. This is way beyond human comprehension, so I acknowledge that this belongs to to realm of faith and divine intervention. I suffer when I realize that my faith is weak like a bag full of holes. Suffering is acknowledging my powerlessness.

Then again, maybe when I am at the end of my rope, is when I can learn to look for God.


Thursday, November 12, 2009

The nature of suffering -1

One of the hardest experiences as a caregiver is to accompany Jan to a Doctor's appointment only to verify that the Doctor is dealing, talking and relating to the "illness" rather to the person. Jan picks up on this and reacts angrily, and having some damage to her frontal lobe cortex, she cannot control her emotions or the way the show up. I probably feel the same way, but I keep my emotions in check and act with civility towards the doctors. I am beginning to rethink often my reactions and I am wondering if I it would be more honest to just let the doctors have it from both, Jan and I. Where did the clinicians got the idea that what they are seeing is an illness and not a suffering person? Some get it. Our family doctor, a young woman from Middle-eastern background, is one of the few that actually looks Jan in the eyes instead of fixing her attention to the chart.

What is more important in our health care system, the cure for an illness of the care of the patient (the sufferer)? I don't know what most people think when they organize marches, walks, runs and many other ways of fund-raising for cancer, diabetes, blindness, when the reality is that there is no cancer, but a person suffering from cancer, etc. Is it that in this large health organizations we have lost the person and got stuck with illnesses? As a sociologist said a half a century ago about the pervasive positivism in social sciences that emphasized more the quantification of social life over the persons: Bring people back in! The same can be said for the health sciences, maybe a little less science and more caring for suffering human beings would do more.

I hope that the way our family doctor relate to Jan is not an anomaly but rather the new paradigm of clinical practice. Once she told a neurosurgeon when he was talking to me about her while she was sitting next to me: "Why don't you ask me, I am a human being also!"


Friday, November 06, 2009

A christmas carol

We went tonight to hear a marvelous reading of the old Dicken's story. Runnymede United seems to have a great production team and the volunteer musicians, readers, organizers, singers, etc, put on a how that can compete with the professionals.

I saw her laughing, and rocking her body to the music. This was ointment for my tired soul. To know that after the storms, there are sunny skies. I just have to have enough patience to wait for them.


Thursday, November 05, 2009

When the birds fly south

The migration of birds is as fascinating as what happens to Jan after a seizure. I am always amazed at the precision of the bird's flight plans. They know when to start the trip, where the food stops are, where they can catch the best tail winds, where they are headed and most importantly, when and how to get back home. The same goes for butterflies and I don't know how many other animals that year after year do the same trip, never getting lost. The migration chip and all the navigational equipment necessary is in place to do what they are programmed to do.

I observe the same meticulous precision in the workings of Jan's brain. Even with an injury, her brain maintains the same navigational tools that guide her all the way back from the land of Oz where she is tossed by a seizure, to the state we call "normal". Like Dorothy, Jan is overpowered by a force stronger than herself, which seizes her and throws her far, far away from what is familiar and clear, to a place of haze where her body stops following her commands and her words, well, say whatever they want, but not exactly what Jan means.

But the trip to Oz is more frightening than fascinating. Everything that should be under control, suddenly is out of control: movement, balance, self-control, speech, consciousness. What amazes me always is the sequence in which her functions reboot. first the consciousness, then the speech, then the strength, then the balance. Precise, like the flight of the birds migrating to the south in late Fall. In a few days, she is back to where she left. Her progress is more like three steps forward and one step back.

Her brain works hard all the time, looking for new paths, looking for the right words to express her thoughts, she didn't really loose the words, what the aneurysm did was to toss all her neatly organized lexicon all over, so when she is looking for a particular word, the task for her is like trying to find the one card in a mountain of disorganized cards, each with one word.

I don't know how her brain actually traces new paths all the time. But I see clearly how it works around and above the damage to bring Jan back in touch with her world. Thank God he created her brain in such a way that it is rebuilding itself.