Monday, April 15, 2019

new try to expand fuctions

The new "wave" of potential helps for Jan.

Recently, we have witnesses a wave of legislation making it legal to use cannabis (THC and CBD) for medicinal purposes. Some jurisdictions have legalized even the recreational use of THC and CBD. The major pieces of the news have been the opportunities that this type of legislation for investors and entrepreneurs to get on the ground level and reap potentially huge profits. Besides the "profit" motive that is the neural spine of our economic system, THC and CBD seem to open new medical therapies for people suffering from chronic pain, seizures and other problematic conditions.
For centuries, the first nations living in Mexico knew about the potential benefits of the cannabis plant.  I knew about these benefits of improving difficult-to-treat symptoms since my childhood. My grandmother's generation in México used THC and CBD as a home remedy for a variety of conditions. They cultivated or bought surreptitiously cannabis plants and "pickle" the flowers and leaves in rubbing alcohol or oil. I vaguely remember her (my grandmother would probably contradict my story) rubbing some of this infused alcohol mix on her hands to reduce the pain caused by arthritis. Also, a neighbour lawyer used to smoke cannabis to deal with stress in her job. No one ever made a big fuzz about it. It was taken for granted that people would use "whatever worked" to alleviate their suffering and stress. Socially, it was probable seen as harmful as alcohol. Of course, children were not allowed to try it, the discussion about it was set aside and dealt with as a taboo topic.
One description that fits Jan's personality is that of a "soujourner". She is an explorer in the truer sense of the word.  If there is something to be tried or done to expand the functions she has recovered after her aneurysm 13 years ago, she will  do it. The only limitations to her explorations are: it has to be legal, and it has to be ethical. And so, she is embarking now in the exploration of how CBD can help reduce her seizures or eliminate them completely, and how she can move to a higher level of speech, short term memory and cognition and reduce pain caused by right neglect. Despite the fact that she is considered to have a "hyper-sensitive" body to any medication, she is embarking in this new trip with high hopes.
In the past few years, she asked several doctors for their opinion about trying CBD. Family physicians and neurologist all said it was "too early", and more studies needed to be done before they could recommend or prescribe its use. But Jan was not going to wait a couple of decades before the medical establishment would get on her side. Her daily battle with pain, poor speech, memory and cognition is a strong incentive to try "whatever is necessary" to alleviate these symptoms and possibly resolve the root cause of the problems. So, as a "soujourner" traveling to unknown places, she began her self-determined trial with CBD. She went to a medical clinic that is among the first ones in town to prescribe and monitor the use and effects of CBD and THC. She was taken as a patient because of her medical history. I suppose she makes an interesting participant in this initial steps.
We are in week one. The results are still uncertain. The first day she started with a small dose: .25mg of CBD and about a sixth of that of THC in an oil presentation. The instruction was to apply it under the tongue for rapid absorption. All the pain disappeared and her speech was wonderfully clear about 12 hours later. But, she felt jittery and with an unusual level of anxiety; her sleep was fragmented and the next morning she felt dizzy and confused. After a consultation with the MD, her dose was reduced to half of the original and the application was to eat it with some other food.
The second day, with half the dose, she felt some beneficial effects after two or three hours, but they disappeared after 6 or 7 hours, leaving some hours of zero chemical in the body before the next dose. The side effects are very unpleasant. An image of this is like being raised several feet off the ground and then being dropped suddenly, hitting hard the ground with your back side.
The third day she went through the same cycle as the second. CBD kicks in within 30 minutes to an hour and she experiences the positive effects. After five or six hours the effects wear out and she snaps back to the base line hard.
On the fourth day, she talked to her family doctor about the dose. He suggested increasing two or three times the dose of .125.  She will increase it slowly over a couple of weeks to allow her body to get used to the effects.
This is a new road with many twists and turns. She is traveling on it with both excitement and caution. She wishes the cost would not be as high as it is. Maybe the market will make the necessary price adjustments.

-     FC

  

Saturday, April 13, 2019

The Next Battle -year 13 (2019)

2019 AC  is Year 13 AA (after aneurysm)
Persistence will let you conquer your fear, persistence will guide you to discover new worlds, persistence can make your dreams come true, persistence can even guide you to wisdom, persistence is the fuel of those who lead, persistence is what assist them to master what they want. With persistence, you can get skills, achieve goals, recover strengths. Another label for persistence is discipline. For some individuals it is easier to develop this mindset. But I suspect that it is more than a learned skill involving only the brain, some aspects of it seem to involve a spiritual disposition as well.   

Persistence is a rare quality that separates the few who possess it from the rest who don't. A great artist said that what separates a Master musician from anyone else is 10,000 hours of practice. It's evident that an individual willing to invest that amount of time to master an instrument has an admirable amount of persistence. I know a woman who qualifies as persistent: Jan, my wife.

When I look at persistence in Jan, I see the shape of her spirit, the size of her heart, the discipline of her brain. She is persistent in what she chooses to believe, even when all evidence points the other way. She says that stating facts is just stating opinions. The reality of the world, once we describe it, is no more than an opinion. And faced with opinions that contradict her own, she chooses hers first. Her persistence is not misinformed. Rather, it springs from the deep pool of the faith she holds in her soul, what she believes to be true in the most profound way, beyond the injuries in her brain. Her faith, -for some, an irrational source of hope- is for her the most important source of power, direction and persistence to keep her focused on what is possible beyond what is rational.
   
It's been 13 years since she suffered an hemorrhage in the left side of her brain -an aneurysm- that disconnected all her right side (right neglect) from her brain, took away her language skills, impaired her walking, balancing, short-term memory, and ability to multitask or separate background and foreground sounds. Her executive center was affected, so it's difficult for her to make some decisions. After the open head surgery to stop the bleeding, the medical staff said that her prognosis of recovery was limited, unable to control her right side, she was expected to live in a wheelchair, with limited speech and probably limited cognition. She came out of the surgery in a coma. The doctors warned that if she could not come out of the coma, potentially she could be plugged to a respirator for life. Her prospects were seriously dim, but even in that liminal or subliminal state, she disagreed with everything that was being said about her. She was determined to come back; she was going to use all her persistence and faith to do just that.

Two weeks after her surgery, a man of God came to see her and told her that for a week he had a dream about a story that he had to tell Jan. At first he resisted, but the dream became persistent. Finally, he agreed and came to the hospital to see Jan, who at that point could hardly understand what was said to her. The 2500 year-old story the man of God had to tell was about a woman who, after her property had been confiscated by royal officials, received a promise from the King himself that "everything that belongs to her will be restored". A few weeks later, when Jan was able to understand the story, she clung to it for dear life. In her heart of hearts, the offer made in the story Jan made it her own. And against all prescriptions and prognosis, she has moved forward, holding that promise close to her soul.

Two years of physiotherapy, occupational and speech therapies, and a lot of persistence brought some functions back. Recovery is a life-long battle and without faith is hard to keep hope alive. She continued exercising to gain more movement, trying new therapies, new ways of creating avenues for her brain to rebuild damaged neuropathways. One day, a neurologist told her that 90% of what she got back was because of her determination and persistence, and 10% because of the medical treatments.

Weeks after the surgery, because of the large scar in her brain, she began having grand-mal seizures. Over the next few years, she tried more than 17 medications to control the seizures. but found that her system is hyper-sensitive and could not tolerate the drugs. Massive side effects from these medications left her to battle the seizures by herself. This has been a constant struggle, as each seizure affects the brain in unexpected ways. Millions of neurons die because of the electric shock that is the seizure. But Jan bounces back each time. It is as if she willed more neurons into existence. right after the seizure. She prefers to see these events as minor inconveniences on the way to full recovery.

She has come a long way in 13 years. There is still a long way ahead. Amazingly, he faith has not only survived the test of time, but has grown stronger. Her persistence brought her to a place where to the medical establishment has run out of explanations. Her recovery has more events than what medical science can explain. Their opinion is that her improvement is the direct result of her persistence. Jan's opinion is that her progress is the direct result of what she was promised by The Creator (the King) himself. The Great Spirit that weaved Jan's body in her mother's womb is able to restore her functions back to where she was. So she waits patiently for the right time.

It's 2019, most people who knew her have moved on. But Jan persistently keeps trying everything within her reach to get more progress.  Recently, she found about a substance from a plant that seems to open the receptors in the brain that are essential for the recovery of functions. She has argued with physicians, who know little about this plant and seem to be more concerned about their professional liability that about Jan's potential full recovery. She started today with a trial with a minimal dose. Being physically hyper-sensitive, she needs an extra portion of courage and determination. So, here is a new step. The first day, she saw less pain, more movement in her right side. Also some negative side effects, but she is determined... did I say that she is determined to continue? Well, her she goes, in her casual and yet humble way, acknowledging that what keeps her standing is her faith in someone bigger than her.  

  -Fede

Monday, November 26, 2012

How do you walk alongside someone in pain?


How do you walk alongside someone in pain?

For the last seven years I have been the caregiver to someone in great pain. Her pain is physical, spiritual and emotional. For all the articulations she has made of her pain and the answers to the inevitable why? why me? she still carries the sequels of her brain hemorrhage as an open wound. By her side, sometimes against all my emotions, I have witnessed her pain and felt my own as I m sure all caregivers do. The most basic lesson I have learned is that I cannot start feeling compassion and then be able to be a companion if I don't acknowledge my own pain and embrace it as part of this new life.
I began looking or examples of this type of "companion" pain, or compassion (suffering with)when I found a copy of Gibson's movie The Passsion. These are my raw notes after seeing the movie once more.

The Passion of the Christ –movie by Mel Gibson,
The Canadian Movie Classification posting at the beginning of the movie reads: brutal violence and classifies it as R (restricted). I wonder how Ruandans or Salvadorians would classify it since they are familiar with the brutality of recent genocide and war. We Canadians have a sanitized version of life.

The movie starts with a dark scene in a garden where Yeshua Nazarit is in a deep struggle in his soul as he faces the pain and execution prescribed to rescue men’s souls. This is a man choked by raw fear of the known. He knows exactly what he is walking into. No surprise, just fear and finally submission. The beatings start almost immediately. Any image of current police brutality comes short of what is portrayed in horrific detail. I wonder why I feel shocked by this sadistic brutality, is it because Yeshua was innocent of the charges? Is it that this type of brutality and level of violence is uncommon to me? Would my reaction be different if I lived in Gaza today? The colonizer is always brutal with the defeated, in this case, however, the violence comes also from neighbors and friendlies, and maybe this makes it more horrific because it chips away at the false sense of security coming from the belief that my neighbours will protect me.

Nonetheless, I find myself most deeply moved by every scene in which Mary silently accompanies her son in his trial, torture and crucifixion. She is portrayed as a stoic woman, at the same time, she is given an aura if wisdom. She does not succumb to her emotions. She feels and suffers deeply, but keeps her heart in check by remembering everything she had heard about her son even before he was conceived. She knew this end was coming. The old man Simon had told her. No surprises there, but a mother will never be ready to see her child hurt. Witnessing this pain seems to cut deep, as deep as the whip cut into Yeshua’s flesh. Stoically she follows the procession don Via Dolorosa as a silent witness, just a stone throw away. Their eyes make contact during the ordeal. He knew why this was necessary, he had come for this; she also knew the prophesies. He takes the blows and feels the pain. She feels the pain of her son as if it was her own. She cries openly with every blow. The other women also cry openly by such violence. Why so much sadism against a peaceful rabbi? When he can, he looks at her to give her comfort by reminding her that this was written and He has to go through it. She looks back at him with all her love of a mother. She would like to soothe his pain, run and embrace him just like she did so many times when Yeshua was a child. Both are witnesses of each other’s pain, and both are willing to pay the price, because of what they have heard from Adonai. Yeshua had suffered his agony in Ghetsemani where he had come to fully accept his Father’s will, Mary suffered hers over the passion.

Watching Mary suffer and witness his son’s death brings in my heart a new dimension to the concept of motherhood. I wonder how much pain my own mother witnessed in her life. Pain from her children, pain from her parents, pain from her siblings. At the end she was a woman full of love and sadness. Sadness for the losses she experienced and love for what she had learned about God.

The passion of the Christ is the passion of Mary. They are different and they are the same. Both knew the purpose and both ran the race together to the end. In this sense, Mary was the first disciple and the one who spent the most time with Yeshua. What she didn’t tell us through a book, she told us by her courage and faithful presence all the way to the cross.

How can I continue to walk alongside my wife? With compassion and a solid understanding that pain is only a part of the journey. With caring friends that also walk along with me and remind me that there was a resurrection.

Monday, June 11, 2012

Brain Injured

Dear Jan:

I was reading the medical reports from day 1, and I just felt overwhelmed with the realization that you were in some moments closer to death than to life. The Plastic Surgeon said last week that you are well know around this hospital. I wonder if one of the reasons is because you were not supposed to survive the magnitude of this aneurysm, and the other reason is that having survived, you have recovered beyond their expectations.

Why are you so special?
In a sense you are strong proof of the plasticity (flexibility) of the brain. Without a language centre, your brain is re-writing word by word, rule by rule, the language program to another section of your brain. How is this happening? No one seems to know, but everyone can clearly see the daily improvements in your speech. How does the brain move the program to control the right hand? No one seems to know, yet, your right hand is coming back. Neurosurgeons, neurologists, psychiatrists wonder about this resilient quality of your brain. In part is your determination; in part is the way the brain heals itself, given the right therapies and the right supports; in part is how God designed this wonderful biological thinking organ, made out for the most part of fat. Somehow, you are challenging old notions and stereotypes and continue to heal beyond the point when most give up.

Your brain has been injured and the rest of the body shows the effects. I notice how people make judgements about you, some take a look at you and decide that it is the same Jan from before, just requiring some minor adjustments; others take a look at you and wonder if the damage to the brain has impaired your cognition to the point where you know and think and react only partially, sitting on top of this evaluation, they feel magnanimous because they can extend you a hand.

At the end of every discussion of who is the new Jan, I have to go back to the only person who can answer this: Jan.