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.