On Christmas Day 2011, Ben Breedlove’s soul went to heaven. But it wasn’t his first time there. Ben suffered from hypertrophic cardiomyopathy (HCM), a heart condition that posed a constant risk of sudden death. His condition, a thickening of the heart muscle, worsened over time, leaving him weak and fatigued. It also led Ben to some close calls medically, in particular cardiac arrest on four separate occasions, during which he felt the presence of angels and experienced the perfect peace of heaven.

Unbeknownst to his parents and family, Ben created a two-part video called “This Is My Story,” in which he used flash cards to tell the world about his near-death experiences and his beckoning toward heaven.

When he died a short while later at the tender age of eighteen, his family and the rest of the world stumbled upon these videos. The world responded with overwhelming acceptance of the message Ben shared.

This was a beautiful story that I happened to see while I was out getting my groceries one day.

I rarely buy books, only because I read so much, so I immediately put in on hold at the library and I’m so glad I did. It was a tender, loving, sweet story of a boy who lived with intention. Ben had HCM, which made me weepy as I read the story because with Duchenne, cardiomyopathy is a condition that most boys will get and that typically can end their lives.

Below are my favorite quotes from the book:

White. Pure White. Ben could see no walls, but only white, a brighter white than he could ever describe that seemed to engulf his surroundings in every direction. In the whiteness, Ben listened to the most quiet he had ever heard in his life.

Then he saw a full length mirror in front of him. He stared at it intently. He was not only looking at his reflection, he was looking at his entire life.

After having an echocardiogram, the doctor told the family that Ben has a condition known as Hypertrophic Cardiomyopathy, making it difficult for his heart to pump blood throughout his body. There is no cure. He will have this disease for the rest of his life. HCM can cause sudden death.

When Ben turned 4 years old, his cardiologist gave him an additional diagnosis of Long QT Syndrome. Similar to HCM, this condition consisted of a type of heartbeat that could lead to fainting, seizures, and sudden death. Patients could also experience sudden death during sleep, when being startled by a loud noise, or when physically exerting themselves too much.

The first time Ben cheated death he was 4 years old. He had a 45 minute seizure.

On Ben’s college application he wrote, “When I was 4 years old, I had a seizure… The only part that I remember is when they were wheeling me down a long dark hall on a stretcher. No lights were on and my mom was walking alongside me at a quick speed. I was lying there, staring up at the ceiling, and there was this huge bright white light right above me, about as long and wide as the stretcher. I said to my mom, “Look at that bright light”.

She responded that there was no light, that the hallway lights were all turned off.

I got a feeling that I didn’t have to care about anything that was happening in the world at that moment. I couldn’t see anything else around me, not even in my peripheral vision, just this bright white light above me. Nothing could be heard; everything was calm. I have always prayed to God about my heart, that I would stay healthy, and whenever I’m scared about something having to do with my heart, that I will just be calm.

One day Ben asked his mom, “Am I going to die?”

She answered, “Yes, we’re all going to die, and none of us know when. I have asthma and I could have an attack and not recover. Your heart condition does give you a risk, but only God knows when we’re going to die. We don’t need to live our lives like they’re death sentences; we need to ENJOY our lives.”

After his death, his brother Jake said, “I know that Ben is happier than he has ever been before”.  It was so peaceful to know that Jake had real peace and real comfort knowing his brother was in good hands. She {his mom} felt the same way, she was not happy to be apart from Ben, but they were truly happy for Ben. No more hospitalizations, no more treatments or monitors. No more worrying about his heart.

Everyone was sad for themselves after Ben passed, but had real joy in knowing that Ben had “graduated” and was not residing in heaven. They were suffering his loss, but he was free.

Until I say Goodbye: My Year of Living with Joy is a beautiful story of a woman, Susan Spencer-Wendel, who makes the most of her final days after discovering she has Amyotrophic Lateral Sclerosis (ALS). It is such an inspirational memoir and I wanted to share my favorite quotes with you all here.

One night in the summer of 2009, I looked down at my left hand. It was scrawny and pale. In the palm, I could see the lines of tendons and the knobs of bones.

I held up my right hand.

It was normal.

“You need to go to the doctor”, John said.

The doctor thought it was carpal tunnel. I went to then see a neurologist.

And thus began my year long odyssey of doctor’s visits. Of attempts to explain my withered limb. To find an answer other than the one John found on his own: ALS.

“What’s that?”

ALS, more commonly known as Lour Gehrig’s Disease, is a neuromuscular disorder wherein the nerves to muscles die, causing the muscles to die as well. It is progressive, meaning it always moves forward. There is no known cause. No treatment and no cure.

ALS would mean that the death in my left hand would spread to my arm. Then through the rest of my body. I would weaken piece by piece, until I was paralyzed. And then, usually 3-5 years of the first symptom, I would die.

I saw 4 specialists in 6 months. When nothing turned up, I stopped having tests and entered into a year of denial.

I was alive. I had a year. Maybe more, but I knew I had one more year at least of good health.

I determined, right there in the Burger King parking lot, to spend it wisely.

To take the trips I’d longed to take and experience each pleasure I’d longed for as well.

To organize what I was leaving behind.

To plant a garden of memories for my family to bloom in their futures.

Lou Gehrig was an athlete. ALS took his talent immediately.

But I was a writer. ALS could curl my fingers and weaken my body, but it could not take my talent.

This book would become a record of my final wonderful year. A gift to my children so they would understand who I was and learn the way to live after tragedy.

With joy.

And without fear.

If Lou Gehrig could feel lucky, then so could I.

So should I.

The trips were part of a larger plan: a year I dedicated to living with joy. A year in which I took seven journeys with seven people central in my life. To the Yukon, Hungary, the Bahamas, Cyprus.

I cannot walk.

I was rolled to the lagoon in a wheelchair.

I cannot support my own weight, even in water.

John carried me from the chair and held me so I would not drown.

I cannot lift my arms to feed myself or hug my children.

My muscles are dying, and they cannot return.

I will never again be able to move my tongue enough to clearly say, “I love you”.

BUT I am alive today.

Her son,  Wesley, began having behavioral issues at 3. He slammed doors over and over. Flipped light switches on and off compulsively. Ignored everything we said.

Then that Christmas it reached a head.

We took him in for an evaluation and the psychologist said that he had Asperger’s.

“What’s that?” we asked.

It’s a form of autism.

I reached for the Kleenex, already crying.

That was and shall remain the worst day of my life.

I still can’t drive past the building where Wesley was diagnosed.

With the ALS, muscle fibers break down.

In normal people when that happens, it repairs itself stronger.

That is the biology behind exercise.

When muscle breaks down in an ALS patient, it never recovers.

It is gone forever.

Accept the life that comes.

I am a HUGE reader and typically have anywhere from 2-5 books on my nightstand at a time.

Each time I read a book that I believe has a great message to share or I just really enjoyed it, I am going to share it here on “Book Joy” and write a few favorite quotes or things I liked from the book.

I recently read this book, Bounce Back, I really enjoyed it because it was a short book that had a lot of great points in it.

1. Denial and Isolation

“This isn’t happening to me”

2. Anger

“How dare this happen to me”

3. Bargaining

“If this doesn’t happen, I promise to…”

4. Depression

“I can’t bear to go through this”

5. Acceptance

“I’m ready; I don’t want to struggle anymore”

Remember when you were a kid and you could work on a sand castle for hours?

Your imagination was stimulated, your focus absolute. All that mattered was the task at hand.

This is called “FLOW”.

People are seldom happier than when they are in the “flow” says psychologist Mihaly Csikazentmihalyi, who has spent more than 25 years researching this phenomenon. He once described flow as “being completely involved in an activity for its own sake. The ego falls away. Time flies. Every movement, action, and thought follows inevitably from the previous one. Your whole being is involved and you’re using your skills to the utmost.”

                                         I asked for wisdom…and God gave me problems to solve.

                                         I asked for prosperity…and God gave me a brain and brawn to work.

                                         I asked for courage…and God gave me danger to overcome.

                                         I asked for love…and God gave me troubled people to help.

                                         I asked for favors…and God gave me opportunities.

                                        I received nothing I wanted, but I received everything I needed.