The inspiration for my last blog post came from an invitation I got from Wendy Toyer, Executive Director of the ALS Society of BC. She asked me if I would speak at the dinner of an ALS golf tournament in Richmond BC on June 3. She said a portion of the proceeds raised go to care giver programs, so every year they ask a care giver to share.
I’ve had “caregiver” on my mind since then and what it meant to me to be Mike’s caregiver. I really poured out my heart in that last post and struck a cord with many and perhaps a nerve with some … maybe.
My friend, Pauline said this about the post, “This was lovely Nadine - poignant and just a little risqué too, well done! Your writing just gets better and better with each post. You are a gifted artist - must be all the love spilling over into brilliance. Thank you for sharing your journey and for keeping Mike's memory alive for those who he meant so much to.”
I appreciate all the comments I get regarding my blog posts. They help me connect with my readers and they help me grow as a writer and as a person. Pauline is an avid reader. She knows books and good writing, so her comment meant a lot. (She’s mentioned in the “Acknowledgements” in my book along with a few other friends who read my manuscript before or during the editing phase. I call them my “Sounding Board”).
When I read her comment, I thought, “Yes, it’s risqué!” But I wasn’t necessarily going for that when I wrote it. I could have just as easily called it, “Hot Dogs and Head Rubs”. The point that I was making was that Mike was easy to please, and his easy and up-beat attitude helped make it a joy to take care of him.
Anyway, my “risqué” blog post got more hits in a 24 hour period than any other post with the exception of the posts Mike and I each wrote during the Ice Bucket Challenge last August. So I guess a risqué title draws people in, I’ll have to keep that in mind for next time - haha. But here’s what’s important; we made a deeper connection - you and me, not because of the risqué title but because of the raw content. Being somewhat transparent seems to be appreciated. I appreciate it in others too.
Early on in my book I compare myself to my friend Carol, describing her as a “window” and myself as a “wall”. Her transparency drew me in a long time ago. It actually helped inspire me to start blogging. Although, if you told me back in September 2011 when I started ALS With Courage that I’d eventually be slicing my heart open and exposing my soul to the world, I’d say, “You’re crazy.” But here I am, more a window now than a wall.
Some friends have asked me how it feels to open up and “to put it all out there”. My response has been something like this: “When you feel called to share your story, you have to surrender it.” Obviously, there are many things I don’t share, but even though Mike and I were both really private people, we both agreed at a certain point to surrender our story. To not hold back too much which would hopefully help others, not just those with ALS, but anyone experiencing tough times; discouragement, disease, depression, death …
At some point you surrender. It’s not about you anymore and touchy subjects … it’s about others. It’s about mothers, daughters, sons, fathers, sisters and brothers, who too, have had their world cave in for one reason or another. To encourage just one, to inspire a couple to keep going…”Don’t give up!” To have faith, to be hopeful, to trust God, to rise above when you feel like digging a hole and jumping in, to give thanks in every ugly circumstance and to keep looking up.
“I was sliding down into the pit and He pulled me out. He brought me up out of the mud and dirt. He set my feet on a rock. He gave me a firm place to stand on.” Psalm 40:2
I’ve been asked to speak at a woman’s event at Riverside Church in Port Coquitlam BC and believe it or not, it’s the night after the golf tournament (so please pray for me). The topic is “Bravery”. So with some fear and possibly a little trembling, I’ll get up there and talk about what being brave means to me. Perhaps I’ll talk about being a nice, big, bright window, because for me, that takes a lot of courage.
Here are a few other comments I received after my last blog post:
“Beautifully written. I am a social worker with ALS patients and sex can be a difficult topic for some to discuss as ALS changes develop. Thanks for addressing this!”
I returned a message to this social worker telling her that I very briefly touch on the subject in the last chapter of my book. Mike and I thought it was important to share that even in the final stages of ALS, there was still a physical aspect to our relationship and although I really missed being hugged and held, we never lost intimacy and there was always lots and lots of love.
A few other comments:
“Very inspiring Nadine. Following this has given me some peace in a way I didn't anticipate. Even though it has been twelve years since my mother passed from ALS. In a strange way seeing how others face this horrible disease with such courage lets me know our family and my mom were not alone. She had to have been so scared yet she never complained or asked why me. Mike was lucky to have you as his caretaker. Incredibly difficult task few can do.”
“ALS will bring the most courageous person to their knees because you feel so helpless to do anything for the person you love. God gives you strength you didn't know you had to finish a journey you never wanted to go on. I miss my wife so much it makes my heart ache with each passing day without her. God bless!”
Here is one more comment I just got today - it’s about my book. It’s from Scott McComb, a man who lives here in Maple Ridge with his family - and he lives with ALS. He was diagnosed with “probable” ALS Feb 21, 2013. I went to school with him and his brother. I think they were a grade and two grades ahead of me, I’m not sure. Anyway, they both showed up at my book signing at Save-On-Foods. Scott and his wife came first. When I said good bye to the person ahead of them and then looked up and saw Scott standing right in front of me, I was speechless. He and his wife were kind of speechless too. I didn’t know what to say. “You’re so brave!”? I didn’t say it, but that’s what I was thinking. When his brother, Neil came, again not much was said. You just kind of look at each other and know.
Anyway, this is Scott's message, “Hey Nadine I wanted to tell you that I really appreciated reading your book. It hit home with me. I can only imagine how much effort and emotion and sleepless nights it took. You both have inspired me to see what is important in life and to stay strong. Best wishes to you and your family. Thanks.”
Thank you Scott! Your message made my day. I know Mike would be very happy too.
Mike and I both agreed if we inspired or encouraged or helped even one person with our story, it would be well worth sharing.
My next book siging is Satuday May 2 from 3:00pm to 6:00pm at T's/Once Upon a Tea Leaf - Tea and Gift shop on 224th St in Maple Ridge. A specal tea will be available called, 'To the Moon and Back' tea with proceeds going to ALS. Thanks Cindy, owner of T's and Shayna for inviting me!
Here's a link to my book on Amazon: http://amzn.to/1FFBkSS
Here's a link to my book on Amazon: http://amzn.to/1FFBkSS