Thursday, 30 April 2015

Sex, Hugs, Rock & Soul

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




Saturday, 18 April 2015

Spaghetti and Quickies


I love love. Happy couples make me smile. My favourite movies are the ones where the boy gets the girl and they live happily ever after. In real life we know that “happily ever after” doesn’t exist. Good relationships take a lot of work and sometimes they are happy, sometimes sad, sometimes mad, and sometimes they are simply perfect.

A few years into our marriage, I thought I had it all figured out. I quickly caught on to the secret of a happy relationship. I realized that if I put my husband before myself and committed my life to making him happy, he would be happy. And if he was happy and had all his needs met, he’d reciprocate. Simple, right? In theory it’s simple, in reality, not so much. It’s a little more complicated than that, especially when you’re selfish like me.

Mike was easy to please; a plate of spaghetti and a “quickie” and he was more than happy. I wasn’t that easy. I’m not talking about spaghetti and quickies, not at all because, a) I’m gluten free, so I don’t eat spaghetti and b) Quickies are for men, I think most women enjoy going slow. What I mean is, I was more difficult to please. I was more selfish than he was. And even though in my heart I believed my “put him first” plan was the best way to a successful marriage, I often veered from “the plan” with the attitude, “what about me?”

Throughout my marriage, when I struggled with “the plan”, I prayed that the Lord would help me. Serving others and denying yourself is tough, it’s a process — it’s a practice that doesn’t always come easy. So, I prayed, and well, you know what they say, “Be careful what you wish for.” In March of 2011, God said, “Here’s your opportunity.”

With God’s help and the help of family and home care support, I joyfully served my husband unselfishly for almost four years while his health declined from the effects of ALS. I didn’t really have a choice in taking care of him, but I had a choice in the “joyfully” part, although, Mike made it easy to serve him with a joyful heart. Don’t get me wrong, taking care of him wasn’t easy. It was a challenge every single day and sometimes I thought I might break. It's amazing how only three and a half months have gone by since Mike passed away and I’ve already forgotten how excruciating caring for a man with ALS can be. Its kind of like after having a baby. You forget the pain and are left with the blessing.

I guess I could say my plan worked. I put Mike first and met all of his needs to the best of my ability and he was happy and his happiness made me happy. Mike had an awesome attitude regardless, which was helpful and I gave thanks for that everyday. I was in awe and I was so humbled.

He was so thankful. I remember telling him not to waste his precious breath and energy thanking me so much. Thinking about his look of gratitude melts my heart. He was so grateful and he was so patient with me.

I say, “Thank you for making my job as easy as possible Michael Sands. Thank you for making me laugh in the grief and for smiling at me when I was at my wits end.” And he would probably say, “Thanks for all the spaghetti and quickies. And thanks for denying yourself and serving me…you did a good job!” 

I’ve said a few times how happy I am Mike’s free. He probably thinks the same thing about me. I can barely type this statement without losing it because I would have taken care of him for fifty more years. Oh my goodness, I miss him so much.



                                                   Me and Mike last summer


Love and prayers to all the care givers out there. My heart goes out to you.


For those of you who haven't seen my Facebook post, my next book signing is on Saturday, May 2 from 3:00 to 6:00pm at T's/Once Upon a Tealeaf located on 224th St in Maple Ridge. It's a lovely gift and tea shop. A special tea will be sold with proceeds going to ALS. Thank you Cindy, owner of T's.

Copies of my book available now at T's and House of James Book Store in Abbotsford BC and coming to Black Bond Books here in Maple Ridge. Also available online at amazon http://amzn.to/1FFBkSS.



Like my Facebook page, Hold On Let Go/ALS With Courage to see pictures and get more details.

Friday, 10 April 2015

Say Cheese

Girl/boy communication was so simple in grade four, don’t you think? A young girl had a crush on a class mate, so she wrote her feelings on a piece of paper torn from one of her notebooks. She folded it up into a little square and gave it to a trusted friend to deliver to the lucky young man at recess or lunch.

It’s like my heart is full of blank pages these days, like a notebook. I pour my deepest feelings on those pages and then tare them out. I fold them into little squares and give them to God, my trusted Friend, and ask Him to deliver them to Mike up there in heaven.

On Friday night, the night before my book signing, I went to bed with a bit of a knot in my stomach. I’m not fond of going to bed without Mike as it is, like I’ve shared before, but this night I missed him more than ever. Instead of climbing right in under my cozy covers, I got down on the floor. Amongst all the boxes of books, on my knees, I prayed over them. I prayed over all my books like I had done every day since receiving them and I prayed about the book signing and I prayed about many things. Eventually my face was on the floor and I just agonized that I had to move forward without Mike … that he’s not here with me anymore.

It’s popular to believe that our loved ones are looking down on us from heaven. But I’m not convinced of it. The Bible says that there are no tears in heaven; there is no sadness, sorrow or pain. Because of that, I don’t think he can see me. I think he’s enamoured with Jesus and enjoying many great things...and he probably thinks about us sometimes too. I just think if everyone in heaven could watch us on earth, there would be lots of sadness there.

So, I came up with the idea that because I talk to God, and because Mike is in His presence, Mike and I can communicate through Him. I understand if you are tempted to roll your eyes right about now, but I researched it and found I’m not the only one who thinks this way. There are a number of ideas, this one is mine and I’m good with it.

The first note Mike wrote me almost 28 years ago was kind of magical. When I close my eyes, I can see myself standing in his crowded kitchen at “the Shack” where he lived with a bunch of guys. I had little black ears on the top of my head, whiskers drawn on my face and a tail attached to my backside. I can’t remember any other Halloween costumes that night except for mine. One of Mike’s friends handed me a note. It was folded a bunch of times into a little square and it accompanied a piece of cheese. The cheese was wrapped and tied with a bit of string.

He captured my heart that night with a little piece of cheese, a note and some string. He pursued me and it didn’t take long before I was his. He continued to woo me throughout our marriage with his simple and sometimes silly messages of love. And I always felt loved.

Shortly after Mike passed away, my friend Carolyn from school came up to me one night before class began. I could see she had something for me and struggled a tittle to explain. She said she had something to give me from her baby daughter’s things. Her daughter, Sabrina passed away a number of years ago when she was just a few months old. Carolyn said she really felt like she was supposed to give this special something to me and then when she read my blog about the rocks, she knew for sure. She handed me the gift and told me it was a message from Mike. With tears welling up in my eyes, I slowly removed the tissue paper it was wrapped in and revealed a rock. Engraved in the rock are the words, “You are loved”.

I’m so glad Mike is free, but the selfish me, wants him back. I’d take just a day - there are things I want to say. So I write them down on those pages in my heart. I tear them out and fold them into little squares and get my trusted Friend to pass them on to him.


                                                             Our first selfie - 1987

The night after I received the note and gift wrapped cheese, Mike and I sat beside each other on his couch and watched a movie. There was a bunch of us crammed on the couch watching the movie and we all shared a big blanket (it was pretty cold at the Shack, I don’t think they had any heat). Anyway, our hidden hands were inches away from each other and by the end of the movie, our fingers were interlocked. When we used to tell the story, Mike would say, “She took my hand.” And I would  say, “He took mine.” So, my dear Michael, let’s agree, we took each other’s hand... And that’s how it all began. 



My book signing at Save-On-Foods was a great success. A huge thanks to Shelley and Manager Cal and all the staff at Save-On...they were amazing! And a huge thank you to my family for all their help...I couldn't do it withouth them. And thanks for everyone who came by. I signed 200 books on Saturday and have been signing books everyday since then. I have a couple of other events in the works and will keep you posted.                                                                                                                Stay posted on my Facebook page - Hold On Let Go/ALS with courage

I've had some great feedback about my book and a few excellent reviews on Amazon...Thank you! I appreciate it so much! Here's the link to buy my book and/or view and give a review http://amzn.to/1FFBkSS

For those outside of Canada, you can go to amazon.com - Hold On, Let Go by Nadine Sands. Leave a review and make my day...thanks!


              My sister says she talks to Mike all the time. She says, God can pass it on.