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First and last shoes to walk in

Duchenne Muscular Dystrophy

I wonder.

acceptance

Kicking my way to acceptance


Dec
12

Proof of Heaven

 

 

If you decide to take my advice and read any of the books I have recommended, then this is

THE ONE.

 

I couldn’t put this book down.

I watched an interview about it and I was hooked.

Here’s a clip of the interview.

 

 

I got it that night and finished it in 2 days.

It was THAT good.

Seriously, BEST book I’ve read all year.

Here is a summary of what it is about:

Dr. Alexander’s own brain was attacked by a rare illness. 

The part of the brain that controls thought and emotion—and in essence makes us human—shut down completely. 

For seven days he lay in a coma. 

Then, as his doctors considered stopping treatment, Alexander’s eyes popped open. 

He had come back.


Alexander’s recovery is a medical miracle. But the real miracle of his story lies elsewhere. 

While his body lay in coma, Alexander journeyed beyond this world and encountered an angelic being who guided him into the deepest realms of super-physical existence. 

There he met, and spoke with, the Divine source of the universe itself.

Alexander’s story is not a fantasy. Before he underwent his journey, he could not reconcile his knowledge of neuroscience with any belief in heaven, God, or the soul. Today Alexander is a doctor who believes that true health can be achieved only when we realize that God and the soul are real and that death is not the end of personal existence but only a transition.

This story would be remarkable no matter who it happened to. That it happened to Dr. Alexander makes it revolutionary. No scientist or person of faith will be able to ignore it. Reading it will change your life.

Here are some quotes that really resonated with me:

I know there will be people who will seek to invalidate my experience anyhow, and many who will discount it out of court, because of a refusal to believe that what I underwent could possibly be “scientific”—could possibly by anything more than a crazy, feverish dream.    

But I know better. 

And both for the sake of those here on earth and those I met beyond this realm, I see it as my duty

—both as a scientist and hence a seeker of truth, and as a doctor devoted to helping people—

to make it known to as many people as I can that what I underwent is true, and real, and of stunning importance. Not just to me, but to all of us.    

If you don’t have a working brain, you can’t be conscious.

  This is because the brain is the machine that produces consciousness in the first place. When the machine breaks down, consciousness stops.

My experience showed me that the death of the body and the brain are not the end of consciousness, that human experience continues beyond the grave.

Mine was in some ways a perfect storm of near-death experiences. As a practicing neurosurgeon with decades of research and hands-on work in the operating room behind me, I was in a better-than-average position to judge not only the reality but also the implications of what happened to me.

The place I went was real. Real in a way that makes the life we’re living here and now completely dreamlike by comparison.

Once I realized the truth behind my journey, I knew I had to tell it. Doing so properly has become the chief task of my life.

Now that I have been privileged to understand that our life does not end with the death of the body or the brain, I see it as my duty, my calling, to tell people about what I saw beyond the body and beyond this earth.

For the next seven days, I would be present to Holley (his wife) and the rest of my family in body alone.

 I remember nothing of this world during that week and have had to glean from others those parts of this story that occurred during the time I was unconscious. 

My mind, my spirit—whatever you may choose to call the central, human part of me—was gone.

Many victims of bacterial meningitis die in the first several days of their illness. Of those who arrive in an emergency room with a rapid downward spiral in neurologic function, as I did, only 10 percent are lucky enough to survive. However, their luck is limited, as many of them will spend the rest of their lives in a vegetative state.

Below me there was countryside. It was green, lush, and earthlike. It was earth . . . but at the same time it wasn’t.

But as you look around, something pulls at you, and you realize that a part of yourself—a part way, deep down—does remember the place after all, and is rejoicing at being back there again.

Imagine being a kid and going to a movie on a summer day.

Maybe the movie was good, and you were entertained as you sat through it.

But then the show ended, and you filed out of the theater and back into the deep, vibrant, welcoming warmth of the summer afternoon.

 And as the air and the sunlight hit you, you wondered why on earth you’d wasted this gorgeous day sitting in a dark theater.

  Multiply that feeling a thousand times, and you still won’t be anywhere close to what it felt like where I was.

Om (his name for God) told me that there is not one universe but many—in fact, more than I could conceive—but that love lay at the center of them all. Evil was present in all the other universes as well, but only in the tiniest trace amounts.

Evil was necessary because without it free will was impossible, and without free will there could be no growth—no forward movement, no chance for us to become what God longed for us to be. Horrible and all-powerful as evil sometimes seemed to be in a world like ours, in the larger picture love was overwhelmingly dominant, and it would ultimately be triumphant.

The only pain and heartache I felt was when I had to return to earth, where I’d begun.

Just as our brains work hard every moment of our waking lives to filter out the barrage of sensory information coming at us from our physical surroundings, selecting the material we actually need in order to survive, so it is that forgetting our trans-earthly identities also allows us to be “here and now” far more effectively.

I saw the earth as a pale blue dot in the immense blackness of physical space. I could see that earth was a place where good and evil mixed, and that this constituted one of its unique features. Even on earth there is much more good than evil, but earth is a place where evil is allowed to gain influence in a way that would be entirely impossible at higher levels of existence. That evil could occasionally have the upper hand was known and allowed by the Creator as a necessary consequence of giving the gift of free will to beings like us.

This other, vastly grander universe isn’t “far away” at all. In fact, it’s right here—right here where I am, typing this sentence, and right there where you are, reading it. It’s not far away physically, but simply exists on a different frequency. It’s right here, right now, but we’re unaware of it because we are for the most part closed to those frequencies on which it manifests.

We—each of us—are intricately, irremovably connected to the larger universe. It is our true home, and thinking that this physical world is all that matters is like shutting oneself up in a small closet and imagining that there is nothing else out beyond it.

Gratitude is not only the greatest of virtues, but the parent of all others.    —CICERO (106–43 BCE)

A story that as time passes I feel certain happened for a reason. Not because I’m anyone special. It’s just that with me, two events occurred in unison and concurrence, and together they break the back of the last efforts of reductive science to tell the world that the material realm is all that exists, and that consciousness, or spirit—yours and mine—is not the great and central mystery of the universe.


Nov
1

Pat Furlong

Pat Furlong is the founding president and CEO of Parent Project Muscular Dystrophy (PPMD), the largest nonprofit organization in the United States solely focused on Duchenne Muscular Dystrophy.

When doctors diagnosed her 2 sons with Duchenne in 1984, Pat immersed herself in Duchenne, working to understand the pathology of the disorder, the extent of research investment, and the mechanisms for optimal care.

In 1994, Pat, together with other parents of young men with Duchenne, founded PPMD to change the course of Duchenne and, ultimately, to find a cure.

Today, she continues to lead the organization and is considered one of the foremost authorities on Duchenne in the world.

Here is a video that tells a little more about her and her story:

http://youtu.be/9U28QPHIA34

The Theater of Duchenne

This is us. 

We are confronted with a “to do” list that extends to the moon and back, 

appropriate for the size of the gene responsible for the word Duchenne,

 which has recently broken down the door of home and heart.

 We have to learn how to say the word DUCHENNE out loud without letting on that our heart is breaking in a million pieces. 

We have to say it to the world we live in, 

our spouse, 

our children,

 our extended family,

 the school, 

and our community. 

We have to search for our own version of optimal care,

 a team of physicians we feel confident have sufficient expertise and experience to care for our sons. We search the internet and connect with the Duchenne Community.

-Pat Furlong

I’m writing all about Pat Furlong today because back in 2012, I had the opportunity to attend a Duchenne Support Group Meeting and she was there.

We were only 4 months into Jackson’s diagnosis.

So, I went to this support group……and I didn’t know what to expect.

I didn’t know if I could keep my emotions in check, but i went anyway.

and i brought my “Keep calm and carry on” tissues.

Pat Furlong Post for Joy in Jacksons Journey

The meeting was going great and we had to go around the room and do our little introductions.

I talked about our recent diagnosis and they asked me all the steps we’ve taken thus far and I discussed all the places we’ve been and all the clinics we’ve traveled to and what decisions we’ve made for Jackson’s care.

The person leading the support group was Pat Furlong, the lady I wrote all about up above.

See, I was so new to the Duchenne Community that I didn’t know who she was.

All i knew from the night before the meeting was her story about her 2 sons because I had read about it in a book and I was sobbing the night before when I read her story.

During my into I also told her how much it meant to me to be able to meet her and share our stories and how I just crumbled upon reading hers.

and of course that is when i lost it and couldn’t keep the tears away.

Because she then told her story and it was so tender and so heartbreaking at the same time.

No one else was really emotional, but don’t worry,

because I was plenty emotional for everyone else.

I was SO nervous before the meeting.

My stomach was in knots and I didn’t eat anything for fear that it would come back up.

After my intro I felt much better and remained calm throughout the entire thing.

No more crying for me,

and let me tell you why.

There was another couple there and their son is 5 years old and has Duchenne and they haven’t really taken the course that a lot of us other families have with their son.

In fact, they haven’t really done anything.

So as I’m going on and on about what we’re doing, they were getting more and more confused and upset.

So then the conversation turns to me because they looked at me and started questioning me and the reasons I’m doing those things.

They disagree with my decisions and feel it is not the best choice.

It was such a weird feeling to be in for me because

this was all SO new to me and as I sat there

I realized that this was the first time {in regards to DMD} that I had to stand up and back the choices that I was making.

I had to inform these parents of why it is the best choice and what the research shows,

and why we’re traveling all around instead of staying local for treatment.

I didn’t know I had it in me so early on to have such an intense discussion, but I have to say that I feel like I did a great job presenting my reasoning and I only hope that they will use the information to find some help for their son.

and I had no hard feelings towards them, even though that would have been quite easy to have, because i understood that it was coming from a place of defensiveness.

Defensiveness because they felt guilty that their son has had a diagnosis for a 1year+ and we were a few weeks into diagnosis and they had done nothing.

So I educated them and I hope they apply my favorite quote to their lives.

“When you know better, you do better”.

-Maya Angelou

The meeting ran WAY over, but it was great.

and i’m really glad that i went.

and i got END DUCHENNE t-shirts for our family,

and i got to meet Pat Furlong and learn from her,

and now I’m ready for the second meeting which is in a few weeks.

 

Pat Furlong Post for Joy in Jacksons Journey

 

To view Jackson’s Personal Donation Page through Parent Project MD click HERE.


Oct
22

The Witness wore Red

I just read this book, The Witness Wore Red, written by Recebba Musser, who was the 19th wife of a polygamous cult leader of the Fundamentalist Latter Day Saints (FLDS) I was horrified by some of the stories that she shared and I highly recommend reading this book. It is eye opening and insane that this is still going on in the world we live in.

Here are some of the passages that really stuck out to me:

Someone passing by our simple two-level redbrick home would likely never guess how many children lived in the basement alone. He would likely be shocked to learn that another large family lived upstairs; the only common denominator between the two families was one man who spent half his nights upstairs with his first wife and children, the other half downstairs with our mother- wife number two- and her children. This man was my father.

I was a “Wilson” and not a “Wall” at my school, and why I could only rarely play with the sweet little girl across the street. If she learned about me- about my brothers and sisters and our family living secretly in the walkout basement- we would risk being discovered.

We wore love-sleeved shirts, girls’ long prairie dresses and skirts, and exceptionally long braids. Mom said we were special, but it wasn’t until I went to kindergarten that I understood we represented a tiny fraction of the population around us.

We worshipped diligently at church, but our people did not have a temple of our own. Someday in the future, it was foretold, we would build one. But for now, we simply had to endure life. We had to suffer pain and sacrifice, because eternity was what mattered.

  Soon Warren restricted everything from forbidding dances, operettas, plays, and even parades. From the pulpit, Warren demanded stricter rules among the people, like completely forbidding anyone to wear the color red, and reiterating that passion and pleasure in the bedroom were for men only. As holders of the Priesthood their passion was meant to fulfill God’s will.  Warren was taking every last thing from the community that gave a sense of purpose or joy.

On September 8, 2002, Rulon Timpson Jeffs passed away (he was the old man on the cover of the book and the leader of the FLDS church). He had prophesied that he would never die, and we had believed him. We all relied on the Prophet for our eternal salvation. And Rulon had promised he would be renewed! Even as we prepared for our Prophet’s funeral services and the people mourned, we kept expecting Rulon to bang on the lid of the coffin and demand to be let out! But there was no sound.

“The minute you revolt from anything that comes from God, you will be under the power of Satan and not be able to resist. One night, Father is going to have you do some things that you may first reject. I’m telling you, be silent and pray for a testimony that you will not reject and that your heart will be open. If you are pure in heart, you will know that this is a truth.”   I sat there, unable to believe how this man was so adept at twisting words and using our beliefs against us for his own purposes. When we obeyed him to the letter, he called us “Father’s Heavenly Angels”. If we voiced a single fear, however, he would say that Satan was finding a place in our hearts.

Up until that point, I wholeheartedly believed in my religion. I did not like Warren and I didn’t agree with his maneuverings, but I believed that I was in the truest church the world had ever known. Had we been told the next step was to drink purple punch filled with cyanide, I would have done so without question.

 I had based my whole life on God’s directive, only to discover it was actually man’s opinion being labeled as God’s will.

(Upon her questioning Warren if this is what God really wants for her) Warren’s eyes turned to steel, filled with cold malice. “I. Will. Break. You.” he said, with deliberate pronunciation on each word. “And I will train you to be a good wife. You have had too much freedom for too long, Becky. No matter who you marry, I will always have jurisdiction over you”.

Right before dawn, avoiding security camera and the prying eyes of any early risers, I slipped over the Jeffses’ six foot high, wrought iron gate. The spikes at the top were tricky to manage in my long skirt, yet nothing compared to the half mile walk I had to trek to meet Ben, fighting my urge to bolt back to my sister-wives, whom I was having great difficulty leaving.

I had tasted freedom, and to go back and witness the strict manipulation of my people broke my heart. I did not judge them, having once “been” them.

On August 29, 2006 I was taking a lunch break with colleagues from a real estate class when I received a call from Sheriff Doran. Quickly I excused myself outside. “Becky, did you see the news?” Warren Jeffs was caught last night outside of Las Vegas!”  I sat down in shock. Warren had been on the run for so long, I hadn’t been sure this day would ever come. Doran told me that the Nevada Highway Patrol had pulled over a brand-new Cadillac Escalade with paper license plates during a routine traffic stop. The trooper did not recognize Warren, but sensed something was wrong when Warren nervously shoveled his salad in his mouth and wouldn’t make eye contact. After calling for back up, they realized that the brand new Cadillac Escalade had been paid in cash and they also found $54,000 in bills in the vehicle, plus tons of letters and cash from his followers. There was also a police scanner, 15 cell phones, walkie-talkies, laptops, credit cards, and keys to many other luxury vehicles. They had wigs and sunglasses and all sorts of accessories.

While on trial this statement came out from Warren’s own record. “There is a girl  the Lord wants me to take. She is thirteen. Oh, I just want the Lord’s will.  If the world knew what I was doing they would hang me from the highest tree.”

The jury went out for deliberation on August 9, 2011 and it only took them 30 minutes for them to return with Warren’s sentence: life plus twenty years.


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