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

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