Brain Injury--Pros and Cons

Cons:

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  • Loss of independence

  • Sensory overload (i.e. difficulties processing sensor input)

  • Emotional volatility (including depression, anxiety, rage)

  • Headaches

  • Seizures

  • Memory loss

  • Short attention span/easily distracted

  • Damaged sequential thinking

  • Trouble with task initiation

  • Inconvenient

    Pros:

  • Heightened awareness (including self-awareness)

  • More in tune with environment

  • More of an extrovert

  • Improved ability to connect with people

  • Increased ability to discover the passion and joy in life

  • Heightened creativity

  • An amazing journey

P.S. Through my brain injury, I discovered writing and rediscovered teaching. I am an author and much better teacher.

P.P.S. My gains far outweigh my losses. I wouldn't want to repeat the experience, but I wouldn't undo it. Through my journey, I have grown as a person and I like who I have become better than the old me.

On Death

I’m sure there are many of us who while experiencing a life threatening ordeal question our feelings about death.

 The Lady of Shalott by Henry Peach Robinson (1830-1901) (labeled for reuse)

The Lady of Shalott by Henry Peach Robinson (1830-1901) (labeled for reuse)

I remember my fear of dying during my first few months after my brain bleeds. Each seizure scared me—would this one kill me? Every brain MRI or a CT scan brought on fear that I would die inside the machine, alone.

Between extreme headaches, seizures, and cognitive issues, my entire world revolved around the bloody brain. Doctors’ appointments, physical therapy, ER visits, and hospitalizations took up much of my time. I could no longer drive, work, or mother. I shuffled through my days, focused on survival, merely existing.

After I started taking anti-seizure meds, the seizures were milder and occurred less often. Around the same time the frequency of my trips to the ER diminished, and my life, such as it was, settled into a pattern.

Dependent on others for rides and unable to work, I spent most of my time at home, alone. Tiring easily, subject to crippling fatigue, and prone to vertigo and loss of balance, I was incapable of doing much.

One day, waking up from a much needed nap, my mind wandered, and the topic of death emerged from the crevices of my mind. My quality of life, or lack thereof, seemed unbearable. How much longer could I tolerate with it?

What if I were to reach the point where I felt the need to actively seek death? I wouldn’t want it to be messy and it wouldn’t be right to ask anyone to help. The only logical option was medication. I would need something effective. Was there anything in my growing arsenal of medication that would work quickly, with little to no discomfort. I started inventorying the meds on my night stand. Anti-seizure-meds? No. Advil—maybe. What about blood pressure—

I slammed the lid down on my thoughts.

It was one thing to experience a fleeting thought about suicide, but quite another to explore methods. And so rationally, too.

I have since been diagnosed with severe depression and have experienced several bouts of suicide ideation.

Several years into my recovery, yet again waking from a nap, my mind roamed. Once more, I found myself exploring my feelings about of death. As my thoughts wandered, it occurred to me that death no longer terrified me  as it had during the early days, after the bleeds.

Intrigued, I dug deeper. Did these thoughts count as suicide ideation? It didn’t feel the same. There were no shades of “they’ll be better off without me” or “I can’t bear living like this.”

This felt more like a state of being, a level of acceptance.

I live with an axe hanging over my head, though it is usually off my radar. I am very much aware of my mortality—the threat of new bleeds will always be with me. Angiomas can become symptomatic even if they don’t bleed, and I have several remaining in my brain. Also, angiomas can grow back.

As I explored my emotions, I realized that my awareness of of my mortality has expanded beyond the bloody brain. When I travel, and encounter passengers who are afraid of flying, I wonder about death from a plane crash. Every time the thought appears, I shrug internally. There isn’t anything I can do about it.

Searching through my inner files, I found that I couldn’t detect any traces of fear of death from causes beyond my control. Of course, I’d rather it were quick and not too painful. And it would be nice if the timing weren’t too inconvenient.

I certainly don’t want to die. In particular, I don’t want to harm my loved ones, especially my kids.

Also, I really like my life now. I would really like to see my memoir do well and make a significant difference in the world. I would like to finish the other books I'm working on.

But ultimately, if it happens it happens.

Moving on.

 

The Other Shoe

Back from a trip to visit my family in Israel, I’m waiting for the other shoe to drop.

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On my first day back, I was exhausted, which was only to be expected. After all, I was jet lagged and combined with the usual bloody brain-related fatigue…

The bloody brain has taught me long ago that the other shoe would drop, at some point—an excruciating headache was bound to compound my fatigue.

But there was no headache.

On day two, still no headache, nor on day three.

Throughout my recovery, traveling drained my resources. During my trips I spent as least one day confined to a darkened room with a headache that defied words. And I came to expect being incapacitated for at least a couple of days upon my return home.

At the end of that third day, a thought crossed my mind—could it be that there won’t be a backlash? Then I made the connection—after my return from the last couple of visits, the headache was less intense than it had been in the past and it lasted no more than a day. And now, here I was, back from a whirlwind trip, at the end of my third day since my return, and there was no sign of the price I’d expected to pay, even though I was exhausted. Clearly I was continuing to heal. Moreover, I was making significant progress in my recovery.

I couldn’t help but allow myself to hope. Had I got away with it this time? Would there be no price to pay? I took my musings a step further: had I recovered sufficiently from my brain injury that there were no horrific headaches in my future? Could it be that in time, I would be completely back to the old me, the neurotypical me, as I was before the brain bleeds?

I caught myself at that last thought. I always prided myself on being realistic—I knew better than to be that optimistic. Though maybe, just maybe…

During the night after my third day, the bloody brain struck with a vengeance with a headache that saturated my entire world with pain. None of the pain killers I tried even took the edge off and the agony seemed to last forever.

The following evening the headache started abating and by the time I retired for the night, it was gone. I finally became able to think and my realistic nature took over. The damage to my brain was definitely here to stay. I would never recover fully.

CBD

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Is this it? Have I finally found that elusive magic pain killer?

Life in the aftermath of the brain bleeds and subsequent surgeries is harder, it is also richer. In addition to returning to my full-time job as a college professor, I became a writer and public speaker. I also travel extensively, nationally and internationally.

Living a full life comes at a price. Among many other symptoms, I suffer from extreme fatigue and debilitating headaches.

Spending my life hiding a darkened room is not an option. I will not surrender to my damaged brain.

I recently returned from an exhausting and wonderful trip. I landed in the U.S. with a goofy smile and the early signs of an excruciating headache.

Because of the ongoing threat of brain bleeds, I have to stay away from any meds that increase the risk. Pain killers with blood thinning properties such as Advil and Aspirin are off limits, as are those that constrict bloods vessels around the brain. The headaches are horrendous, but the chance of another bleed is unthinkable.

As a brain injury survivor, I am hypersensitive to anything that causes neurological effects. I can’t take any controlled substances, such as morphine and vicodin.

Tylenol, my one remaining choice, doesn’t touch my headaches—I might as well take a placebo.

Since none of the usual pain killers work, I’ve resorted to experimenting with natural remedies.

A friend mentioned her success with ginger. When I complained that neither ginger tea nor capsules helped, she suggested crystallized ginger. It was effective—it took care of even the worst of headaches.

I was sure I found my wonder-drug. But several months later, ginger stopped working, completely, for no apparent reason.

My chiropractor urged me to experiment with turmeric, an anti inflammatory. No, it was no wonder-drug. But it usually took the edge off the pain, allowing me to function at an acceptable level. But like ginger, it too, stopped working after a while.

I continued my search—there had to be something out there.

Taking the advice of a fellow headache sufferer, I am now experimenting with CBD (cannabidiol) hemp oil. Though marijuana and hemp are both forms of the cannabis plant and have similar healing properties, unlike marijuana, hemp does not bring on a high, and is legal in all fifty states.

It worked! Like a charm! Once again, I was headache-free. Not only did it take care of even the worst headaches, it acted swiftly.

About to embark on a trip, I stopped off at the nearby apothecary to replenish my supply, and discovered CBD chewing gum, at 10 mg per tablet. Unlike the oil, it did not taste vile, and would not be at risk of spilling—it would be perfect. It was perfect. Though exhausted during the trip, I was able push on, enjoying myself as I hadn’t in years.

Back home, the CBD continued to be effective.

Until yesterday. I woke up with a headache. I chewed some CBD gum—nothing. I took a dropper full of CBD oil—no effect. And the headache kept worsening. Ever hopeful, I alternated between gum and oil throughout the day. By lunchtime, the pain overwhelmed my entire being. I lay in bed, the blinds lowered, dozing fitfully, occasionally whimpering.

From past experience, I knew I’d be spending the next couple of days in bed until the headache ran its course. But come evening, the pain suddenly switched from all consuming to nothing.

This morning, waking to a slight headache, I popped a piece of gum into my mouth. So far so good.

Have I found an effective treatment after all?

No Sweat

 20100321 Car Accident 004 photo credit: cygnus921

20100321 Car Accident 004 photo credit: cygnus921

I asked Sarah to alert me when I got too close to the side of the garage door.

I slammed on the breaks when I heard the crunch.

“You’re too close.”

We both burst into laughter. It was hilarious, and the car… I shrugged internally—was already embellished with a couple of scratches.

Joyce broke the hamsa my sister gave me. I felt my anger just beneath surface, about to explode. It meant a lot to me—a thoughtful housewarming gift from sister, for good luck. But I immediately extinguished it—it was just a thing.

My student, Amanda, hesitated to hire a tutor, despite needing one badly. I knew she would fail the course otherwise. My only concern about offering to pay him was that Amanda might feel weird about it. After all, it was only money.

In my past life, I would have yelled at Sarah. It would have taken a lot more out of me to put a lid on my anger towards Joyce. Would it have even occurred to me to pay for Amanda’s tutor?

Life is too short.

I no longer sweat the small stuff.

Breathing

 Body of Sternum Frontal  en:Anatomography

Body of Sternum Frontal en:Anatomography

I remember hearing myself yell and the box of books shifting as the corner slammed into my chest. I don’t remember much else about the actual fall.

I knew I didn’t hit my head—was that my first thought? Did I yell because of my fear of another brain injury? I am head shy, ever since the brain surgeries.

I remember lying on the rug telling myself I should assess the damage. I recall hesitating, reluctant to find out. I couldn’t afford to seriously hurt myself—I had to teach the next day and travel the day after.

No pain in my head—check. Though I did feel a headache coming on. No signs of breaking or spraining anything—check.

I was still lying on the rug when I became fully aware of the pain. My knee was burning—just a scrape. The pain in my chest—

A memory slammed into me—a painful sternal rub. I was in the neuro-ICU after I was diagnosed with a CSF (cerebral spinal fluid) leak. In the hopes that the leak would heal itself, the doctors administered a lumbar drain to relieve pressure from CSF at the site of the leak.

The lumbar drain involved a tube running from my spinal column through the small of my back, into a bag (similar to a reverse IV). During this procedure, the tube got dislodged twice, causing CSF to leak through the hole in my back, creating a puddle under on the bed. Each time, to plug the leak, a neurosurgery resident stitched it up. In both cases it was done without anesthetic. Apparently, the procedure didn’t even warrant any, even a local.

The first time it happened, the nurse offered a hand for me to squeeze every time the needle jabbed into me. I vaguely remember squeezing it so hard that I later apologized for causing him pain.

During the second time, it was up to me to deal with the pain, alone. The nurse offered no help and I didn’t have the wherewithal to ask for it.

The resident jabbed through my skin again and again, seemingly for ever. The room was dark. It couldn’t have been, he had to see in order to stitch me up. I must have lost consciousness.

My next memory was unbearable pain in my chest. Why was the resident rubbing my chest with his knuckles, and applying so much pressure? Only recently did I learn that he was performing a sternal rub. Sternal rubs are used to assess the level of consciousness.

He rubbed so hard my chest and the resulting pain so intense, I had trouble breathing. The next day, my difficulties worsened. I was only capable of taking shallow breaths. An x-ray determined that nothing was broken—I was merely bruised.

To me, there was nothing merely about this pain.

And now, after the corner of the box broke my fall, I was having similar difficulties breathing. And like that time, in hospital, the bruising subsided a few days later, and with it my breathing issues.

Back Strap Weaving

 Credit: Rob Young

Credit: Rob Young

The Mayan weaver was kneeling on the ground in front of her loom weaving complex patterns. I stood above her mesmerized, watching her fingers flying across the warp, one row, then another and another. How did she do that, so deftly, without consulting a design? How did she keep track of all those colors?

The backstrap (body tensioned) loom is one of the simplest looms used by indigenous weavers. The backstrap refers to a strap that fits around the back of the weaver’s midsection. In the front, the strap is attached to the loom’s breast beam. The warp is then usually strung between a stationary object and the breast beam, and the tension on the warp is set by the weaver leaning against the strap. Backstrap looms vary in different parts of the world, in their construction, whether the strap is made of leather or fabric, and the warp is continuous or discontinuous, and the particulars of the position of the weaver relative to the loom.

In Central and South America and in isolated pockets in Asia, most weavers either kneel or sit in front of the loom, the back beam is tied to a tree, or a pole. They control the tension on the warp is obtained by leaning back. Of all the versions of the backstrap looms, this one is by far the easiest one to transport and set up.

In southeast Asia, the majority of backstrap weavers usually sit upright, legs outstretched, feet braced against the back beam.

In some places in Asia, the back beam is held firmly in place. In Bhutan, the it’s part of a frame that is anchored to a wall. In Indonesia, the beam fits between a pair of fixed supports. However, in Laos and Vietnam, as ion Central and South America, the back beam is not supported. Unlike South and Central America, where the back beam is tied to a tree, in Laos and Vietnam the unsupported beam is held in place by the weaver leaning backward, her feet braced against it.

For narrow warps, such as belt looms or in tablet weaving, there’s no need for a back beam. The warp threads are knotted together and the knot is tied to a stationary object. But in cases where the finished fabric is wider, a device that spreads out the warp threads helps maintain an even tension. In most cases the back beam plays that role. But in the Ainu looms in Japan, a bamboo reed, hanging behind the heddle bars both keeps the order in the warp threads and prevents them from bunching up.

 Kayan Women Burma. Credit: Thomas Schoch

Kayan Women Burma. Credit: Thomas Schoch

Similarly to many Asian backstrap weavers, the Ainu weaver sits with outstretched legs. But instead of bracing her feet against the (nonexistent) back beam, she rests her feet against the reed.

In Japan and Korea, some of the looms are transitional, a hybrid between a back strap loom and a single harness loom, where the entire frame is stationary. As in traditional backstrap weaving, the weaver leans against a strap for tensioning. But unlike most backstrap looms, where sheds are created by raising and lowering heddle bars, in transitional looms, the back beam is part of a stationary frame, where the harness, which creates the shed, is operated through a cord that is attached to the weaver’s foot.

Whichever technique back strap weaver uses, it’s clear that it is very hard on the body. A Bhutanese weaver I met at a weaving conference more than a decade ago, mentioned that the pain in her back and outstretched legs can become unbearable, limiting her hours of weaving.

As I watched the Mayan weaver kneeling on the ground, advancing row by row, and she created a gorgeous huipil, I wondered how long she could keep going—her back must have been killing her.

Resources:

  • Ann Hecht, The Art of the Loom: Weaving Spinning & Dyeing Across the World, University of Washington Press.

  • Eric Broudy, The Book of Looms: a History of the Handloom from Ancient Times to the Present, University Press of New England.

  • H. Ling Roth, Studies in Primitive Looms, Robin & Russ Handweavers.

  • Andrew Hunter Whiteford, Herbert Spencer Zim, and Owen Vernon Shaffer, North America Indian Arts, St. Martin’s Press.

Disturbing the Peace

I admired these women, these accomplished artists who struggled against the shackles society placed on them. In order to achieve success, many felt the need to work within those restrictions, ignoring a yen to be treated as their male counterparts during the period of impressionism. Some struggled against those bonds, defying societal norms, forging a path for the less assertive and for the female artists to come.

I was eager to see more, to learn more.

 Denver Art Museum. Credit: Ray Tsang

Denver Art Museum. Credit: Ray Tsang

I was attending the exhibit Her Paris: Women Artists in the Age of Impressionism at The Denver Art Museum.

I wove my way through the exhibit halls, marveling at the artwork. Some of the artists worked within the confines society placed on them, focusing on ladylike subjects such as motherhood or women’s fashion. But others were defiant, like Rosa Bonheur who visited slaughterhouses to understand the musculoskeletal system of cattle in order to depict them in accurately in her paintings.

Fascinated by the work of these women, I advanced deeper into the exhibit, perusing the paintings. I found myself skirting some of them, even though I wanted to move from one picture to the next, absorbing it all. But why?

Through wisps of an inner fog, I noticed I was avoiding herds of fellow attendees. I flinched away from a woman wearing garishly colored attire, and kept my distance from a particularly boisterous group.

I was suffering from my usual difficulties processing too much sensory input. I realized through the thickening smog in my mind that I needed to make my escape, as soon as possible. But by then it was too late—as often occurs in such situations, my ability make my own choices was waning. Vaguely aware I was heading towards the exit, incapable of proactively heading there, I followed the crowd.

Still able to maintain some semblance of control, I managed to skip paintings that attracted more than two or three viewers. But in my usual reluctance to give in to the bloody brain, I occasionally paused in front of works of art that caught my eye and drew me in.

One painting in particular spoke to me. The colors, neutral, drab even, browns and grays, weren’t the focus of my interest, neither was the skill of the artist. The main reason I felt a connection between us was the subject—the naked trees reflected in a lake lent a serenity to the painting, a much needed break from my surroundings.

Gazing at bodies of water always gave me a respite when I became overwhelmed by my surrounding. Unfortunately, they weren’t always at hand.

I stood behind a couple admirers who were discussing the artist’s technique, allowing peace to sink in. With the quiet in the painting grounding me in a less than ideal situation, keeping the rest of the world at bay, I felt my tense muscles relaxing. As the two art critics moved on, an object that they had blocked appeared—a sharply defined paddler-bearing canoe in the left hand corner of the painting. It was directed inward. In my mind’s eye, I saw it moving forward, towards the center of the lake, of the painting.

The thought of it disrupting the stillness was unbearable.

I turned away. About to continue on my way, I hesitated. Why did I turn away? Why did the canoe and its paddler upset me?

I turned back and contemplated the painting for a long moment.

Though the canoe added to the composition of the painting, it detracted from the sense of serenity. But why?

The haze in my mind cleared briefly, and it clicked. The serenity in the painting guided me out of the chaos, then the ripples caused by paddler in his canoe disturbed the peace, tipping me back over the edge, towards the chaos.

In that moment of clarity, I knew I had to make my escape, immediately, before I was caught once more in the mayhem.

I scurried towards the exit.

Battle of Opposits

Yes, I admit to using the five second rule—if a pretzel falls on the floor and I pick it up within five seconds, I deem it still edible. As long as the floor isn’t too horrifically dirty.

When I read my friend’s post about the five second rule, I was confused. What did the rule have to do with writing? It just didn’t make sense.

She spoke of the it as a way of being more productive. But I still couldn’t see the connection. Curious, I Googled it.

According to the publisher of Mel Robbins’ book, The 5 Second Rule: Transform Your Life, Work, and Confidence with Everyday Courage,“is a self-help book based on a simple psychological tool that the author developed to motivate herself. Using a technique that involves counting down backwards from five to one, she gave herself the extra push she needed to complete dreaded tasks, become more productive, and live a more fulfilling life.”

The idea is that once the thought of taking on an activity (in her case related to writing) occurs to you, you have to begin it within five seconds.

I had to try it out. Working full time as a college professor, I chose a Saturday to test it. I tried to use it to force myself to get up within five seconds of waking up. It didn’t work—I was too comfy in my bed. I luxuriated under the covers for another half an hour before I managed to convince myself to get up.

Just as I was finishing brushing my teeth, I decided to open up my laptop to get ready to write my morning away. Within five seconds, acted on it, then returned to my room to take my meds and finish getting dressed. Within five seconds of completing the tasks, I was at my computer, writing.

An hour later, at a good place to take a break, my inner critic, Shoshana, tried to convince me it was time for a nap. I chided myself, and within five seconds, I was on to the next paragraph. This happened a couple of times, until I finished a first draft.

I was thrilled. What about if I decided to work on a second essay? It worked! From finishing the first draft, I moved on to send query emails about speaking engagements and book events.

The next item on my list gave me pause, to start grading a pile of essays. Though I felt motivated, the five second rule failed—common sense kicked in. I really had to listen to my body—I was exhausted. I absolutely had to lie down, or I’d pay a heavy price.

I’m a brain injury survivor. As a consequence I tire easily, and when I overdo things overwhelming fatigue sets in. And if I don’t take action, I suffer horrific headaches.

I came away from that day feeling good about myself. I’d been more productive than I’d been in a long time.

I was glad I found an effective way to thwart Shoshana’s attempts to sidetrack me—I was going to apply this rule every day.

Since then I found that the five second rule be counterproductive on occasion..

At the end of a productive day, I often find myself beyond exhausted, unable to function properly. I became incapable of performing the simplest of tasks, barely able to get to bed.

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In addition, sometimes, as soon as I begin a task, the though of another task pops up, and another, then another. I become overwhelmed, and freeze—another symptom of my brain injury. Whenever too much data floods my inner circuitry, I lose orientation, and freeze—my mind becomes a blank.

I do have a remedy—I take a shower to soothe the beast—my mind clears, allowing me to make order out of the chaos, to set up a list of priorities, and pick out three doable tasks that will satisfy a sensible level productivity, my conditions of enoughness. And again, once I finish dressing, I’m off and running.

I learned about applying conditions of enoughness from my writing coach. The idea is to set a doable number of tasks to increase the chances of completing them. It is another tool to combat Shoshana, by not becoming overwhelmed and freezing.

I have learnt to adjust the five second rule in a way that works best for me. I even learned to work it into my issues with fatigue—every time I feel the early signs of exhaustion, I use the rule to take a nap.

I’ve also found that when the rule fails me, it actually increases my motivation and conviction to start the task, whether withing five seconds, five minutes, five hours, and rarely withing five days. I know I will get to it, and I always do.

The rule isn’t infallible, but it has definitely increased my level of productivity and helped me shut Shoshana up.

The five second rule rules.

Benefits

I suffered many losses to the Bloody Brain. But I feel as if for every loss there was a gain. In fact, I feel that the gains far outweigh the losses.

After the bleeds, I had to take a crash course in asking for help. Learning to share my vulnerabilities did not come easily to me. But I quickly realized that by doing so, I was transforming my weaknesses into strengths—as I opened up to the world, people opened up to me. I formed stronger bonds, deeper friendships.

I have difficulties processing sensory input, a consequence of the loss and damage to my inner filters. Data floods my neural pathways, without discrimination. But those same filters allow me to notice details that I was unaware of prior to my brain injury.

When my son, when he was a toddler, encountered snow for the first time. He stuck his index finger into a snow bank. He then brought his finger up and gazed at the snow flake melting on the tip of his finger. During the first winter after the surgeries, I found myself doing the exact same thing.

I am much more in tune with my surroundings than in thepast. Not only do I enjoy walk through the nearby nature reserve more than I ever did, but I am also better able to read social cues, eliminating the social awkwardness I used to experience.

My output filters cause me to be less inhibited. I expose my more volatile moods in public. I undergo meltdowns among strangers and I struggle to keep a lid on my rage.

I’m lucky—unlike many other brain injury survivors, my bouts of rage are not only rare, and (so far) haven’t harmful.

I was on the phone. The caller droned on and on. I couldn’t get him off the phone. I got angrier and angrier. Finally, I couldn’t take it anymore. I threw the phone with all the force I could muster, onto the bed. It bounced. Twice.

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On the flip side, my damaged output filters have brought me more intense joy and passion than I experienced in my past life.

In order to return to the classroom, I had to relearn math, starting with the multiplication tables and adding fractions, then college algebra textbook, and finally calculus

I became much more empathetic towards the struggling students.

In the rewiring process, I had to learn to work my way around my issues with linear processing. And my ability to address different ways of thinking improved.

I became a much better teacher. I love interacting with the students.

As I tried to understand what happened to me, I started writing—a day without writing feels empty. I am a passionate writer, a published author.

I needed to know what changed in me. Who I was compared to who I am. I explored the notion of mind versus self—my awareness, including my self-awareness grew.

I became a more authentic version of myself, more me. I am much more comfortable in my own skin. Despite my depression, I am more content overall.

I have no regrets about the brain bleeds and subsequent brain surgeries. I wouldn’t want to repeat the experience, bur it brought me to where I am now. I lead a more fulfilling life. I am a better person. A happier person.