May is ALS / MND month. I lost my best friend to ALS - Lessons from Joy

1. The Gift of Joy

2. The Gift of Joy
In 1992, I was accepted into college in Calgary, but had not
determined yet where I would live. I had thought, “residence”,
but my father and my Aunt Opal had a plan.
Joy, my cousin, was widowed only three months earlier and
my father and her mother, determined that whether or not she
or I realized it, we needed each other.

3. The Gift of Joy
Our “co-habitation” at first was difficult. She was a 31- year-old
grieving widow and I was homesick country-kid barely out of my
teens, living in the “big city”.
Over time and long conversations about life, (usually over wine) we
found we had more in common than we had imagined. Beyond
family, we became inseparable friends, finishing each-other’s
sentences, sharing our deepest secrets, screening bad boyfriends
and spending a good deal of time analyzing life, or as Joy would
say,
“…solving the problems of the world”.

4. The Gift of Joy
One afternoon I received a call: Joy’s father had passed away. He
had suffered from Alzheimer's for many years, so it was not a
surprise, but no less painful. Joy was still very much grieving the
loss of a husband and was not emotionally prepared to lose her
father.
After the funeral Joy said to me, “…if another person in my life
dies, I don’t know what I will do.”

5. The Gift of Joy
A little more than a year later, I was working late at Spruce Meadows.
It was tournament time and we were putting in long hours. I don’t know exactly
when the feeling crept in, but it did, and with every hour, I become more anxious.
I did not know why, but I knew I needed to go home.
Still I stayed. It was after 10pm when I turned to my manager and said,
“I need to go.”

6. The Gift of Joy
When I arrived home, it was almost midnight, yet the the lights were on.
It was a moment of knowing that the fear I sensed hours before was becoming real, yet I did not
know what it was.
I paused at the door and held my breath and thought, “I wish it could stay this way.” I didn’t want to
know. I didn’t want to walk into the living room where I knew I would find Joy.
But I did.
Joy was sitting in “her” chair, tears streaming down her cheeks. She had been waiting for
hours…she did not call my work, she did not let me know…she just waited until I got home.

7. The Gift of Joy
“There was a car accident,” she choked. I don’t remember much after she said the
words.
Aunt Opal, the one who had co-conspired with my father, her mother, the reason
Joy and I were now friends, was gone.
As were five of our family members, my father’s sisters… Aunt Elsie and Uncle
Harold, Aunt Ruby and our cousin-in-law Ilene. Gone.
There is nothing one can do to prepare for the intense shock and grief we felt, nor
are there words to express the emptiness, nor the insanity of having the media
publish the pictures of the burned car or the names of our family, over and over in
the press.

8. The Gift of Joy
That day forever changed us.
Joy never again said, “…if someone else in my life should
die, I don’t know what I will do.”
We both knew what we would do… we would live.
We would be changed, but we would live.

9. The Gift of Joy
In 1997, our Uncle Carl, the only remaining besides my father, was diagnosed
with terminal lung cancer. It was Joy, who said to me after a visit to the hospital,
“…he is afraid and shouldn’t be alone.”
I understood, and because of Joy, I stopped my “busy life” to spend time with
Uncle Carl.
It was perhaps one of the best decisions I have ever made.
For months I came every day to read, talk and learn about my family.
Joy was travelling a lot with work, would come in with maps, pictures and
stories of her adventures. Carl would smile and look forward to our visits.

10. The Gift of Joy
“Unckie” or Uncle Carl was like a father to me, and he was the first person who I
watched die. I held his hand, we told stories, I listened to the rattle in his chest as he
would try to sleep, and when the time came, I felt him leave.
Later Joy said to me,
“…at least we were able to say good-bye…I’ve never been able to say good-bye.”
She was right, as difficult as it was, I had been blessed with the opportunity to learn
more about him, tell him I loved him, and ultimately, say goodbye. Joy made me
aware of how important something as simple as saying goodbye, could be.

11. The Gift of Joy
Every year, Joy would give me a birthday card,
and every year she would write, “..next year will
be a better year.”
On my 30th birthday she wrote, “I am not going
to say it is going to be a better year… who
knows! xoxox” She and I both knew…
“Life isn’t about waiting for the storm to
pass, it is about learning to dance in the
rain.”

12. The Gift of Joy
In the winter of 2009, Joy complained of numbness in her left
hand and her left leg.
Doctors blamed nerve damage and I blamed running, but even
after surgery on her arm and a hiatus from running, the
numbness became more prevalent. We knew it was a bigger
problem when her right hand began to atrophy… but we didn’t
yet know what we were dealing with.

13. The Gift of Joy
Joy was diagnosed with ALS – Amyotrophic Lateral
Sclerosis.
At 50 years of age, she learned that she would rapidly lose
the ability to walk, talk and eventually breathe.
There is no known cause or cure for ALS.
Joy was going to die.

14. The Gift of Joy
 She jumped from a plane.
 She flew through the Grand
Canyon in a helicopter.
 She travelled to Australia and
swam in the ocean.

15. The Gift of Joy
 She moved her family to Mexico.
 She got married.
 She laughed out loud for as long as ALS
would allow.
 She had a party (or a few) &
 She said good-bye.

16. The Gift of Joy
Canada Day, 2011, in the midst of
fireworks and celebrations, Joy
left this world…
but she also left life
lessons, which I will
share with you.

17. The Gift of Joy
Don’t wait for the Doctor’s diagnosis to realize you are
going to die. You are going to die.
Instead, ask yourself, “How do I want to live?”
…and do that.

18. The Gift of Joy
Always say good-bye and appreciate the person when you
do. Good-bye’s may be final, don’t make the last one
regrettable or forgettable.

19. The Gift of Joy
Never be too embarrassed to say “I love you” and hugs are
good…very good. People do not hug near enough, or say “I
love you” as often as they should.

20. The Gift of Joy
Laugh loudly and live life large… don’t be afraid to bare
your soul. If being who you are causes others to be
uncomfortable, be who you are anyway.

21. The Gift of Joy
Live life “Joy-fully”, knowing each day, each moment is a gift.
Be fearless. Be kind.
Laugh. Love. Dance. Sing. Repeat.
Joy taught me to be authentic and fearless. Thank you, Joy, for the friendship. It
was not an easy road, but I am glad I took it with you.
Perhaps still one day, Joy my friend, we will indeed solve the problems of the
world.
xoxo

22. The Gift of Joy
May is ALS month. Please raise awareness of ALS / MND and help others
who are diagnosed with this terrible disease. It is too late for Joy, but I
know that she would be overjoyed to know that in some way, somehow, she
might help to save others to overcome this disease. Where there is hope,
there is Joy.
In memory of Joy Styles, a Facebook page, and website have been created to share inspiration and information about
ALS (amyotrophic lateral sclerosis).
You can learn more at: http://www.hopeforjoy.ca or follow on Facebook, https://www.facebook.com/hopeforjoy