Thursday, 28 August 2014

Ice Bucket List - by Mike Sands

In the Christmas movie Elf, Santa Claus is seen stranded in Central Park, New York. The motor on his sleigh breaks down and Buddy the elf attempts to fix it. As Buddy works on the sleigh, Santa explains to Buddy that in the good old days he would never have this problem because his sleigh was powered by the spirit of Christmas. 

Buddy’s girlfriend convinces a crowd to join her in singing Christmas carols. The group’s singing is broadcasted nationwide and soon everyone is singing, which raises the spirit of christmas to new heights. Santa’s sleigh is soon seen soaring in the sky.

I had my first symptoms of ALS four years ago this month. Over the past four years I have lost the ability to walk, talk, move most of my body and swallow properly; in essence every muscle in my body has stopped working or is on it’s way to that result. 

It’s understandable for anyone in these circumstances to be in low spirits. As I experience my body deteriorating on a daily basis I look for things to raise my spirits and the recent ALS Ice Bucket Challenge has done this. The money raised is great but what’s even more important is that the challenge is a sign that society is in our corner, ready to fight this disease with us arm in arm. 

Right now with my elevated spirits, I think I could guide Santa’s sleigh clear around the world.

It took Mike a few day to write this blog post...Ice Buck List. Below are pictures of him working on the piece, one letter at a time on his communication device, the DynaVox. His neck muscles don't last long, so his window of time to write is very limited. 

Mike's blog post's Fried Chicken Bucket List, My "R" Rated Blog and Hawaii 5-Old are the most read posts on ALS With Courage. My favourite is Ahoy Matey...and now this one! Check them out!






Friday, 22 August 2014

Pouring Buckets

They say when it rains it pours and that’s exactly what’s been happening around here lately. It’s been pouring buckets for the last few weeks, but before I say anything about the Ice Bucket Craze for ALS, I’m going to back things up to last Saturday.

I was spending a lot of time with Erin who was recovering from her hip replacement surgery, but I had come home for a little while to see Mike…I was so thankful Aileen and Pat were here for the week making it possible for me to go back and forth.

I had just left the house and was heading back to Erin’s when I got a call from my mom. I had left my parents a message earlier asking if they had heard back from the doctor regarding my dad’s recent blood test results. 

My dad had been to the doctor a few days before at the prompting of some friends who thought his skin looked a little yellow. I noticed his colour was off too, kind of like a spray tan gone bad. My dad has never had a spray tan - he’s probably never heard of a spray tan, so maybe I should have said something.

Anyway, my mom returned my call to tell me they had heard back from the doctor about the blood work and that the doctor sent my dad straight to the hospital because something wasn’t right and they wanted to do more tests. 

So then I found myself at the 7-11 by the hospital picking up snacks and a puzzle book for my dad…I felt like I was dreaming. Only a half an hour earlier, I was suctioning the back of Mike’s throat and a few hours before that, I was doing Erin’s laundry and helping her with her mobility exercises and a week before that I was sitting beside my dad out in the back yard with the rest of the family listening to him recall stories from his all-time favourite trip to Paraguay.

My dad has lots of interesting and exciting stories about his travels. I tell him he should write a book one day. He says he will when he retires from his missionary work…but he also says he’s never going to retire.

If you ask him about this particular trip to Paraguay, he reminds you again it is his very favourite. It was a trip to connect with his parent’s past and learn about the history of his ancestors and meet relatives he never knew. 

His parents, along with a large Mennonite community from Manitoba followed their hopes and dreams to a place they were told was a land of milk and honey. This was in the late1920s before my dad was born.

The milk and honey turned out to be Typhoid Fever and many members of the group died, including my dad’s aunt and sister. My grandmother was so devastated and very sick herself, she just wanted to go home. So back to Manitoba they went and started again from scratch.

My dad’s eyes light up when he talks about traveling on the beautiful Paraguayan River and visiting the land his parent’s tried to build a life on. He tells you about seeing the spot his baby sister was laid to rest, along with his aunt. He tells about the connections he made with the relatives still there, and he particularly loves to talk about the ride he took by train from Port of Casados to the Mennonite colonies.

The first thought that came to my mind when I heard my dad was in the hospital was this visit in the back yard the week prior and the feeling I got while I listened to this story I have heard many times before…the feeling was a lovely, peaceful, feeling. I just relaxed and listened and loved how excited he was to tell about it again…and yes, I wondered about his weird tan.

The weird tan was a symptom and the CT Scan revealed a tumour in his pancreas and a biopsy revealed cancer. Wow, it was a quite a blow for sure and like they say, when it rains it pours and sometimes it pours buckets…even during the most sunny month of the year.

While we waited for test results to see if the cancer had spread, we of course prayed and hoped for the best. While we prayed and hoped for the best, another prayer was being answered.

This is what I said about the recent ALS fundraiser phenomenon in an article I wrote for iVillage, a Corus Entertainment property and women’s lifestyle website based in Toronto:

“Recently, Lou Gehrig’s Disease has been in the spotlight with the viral “Ice Bucket Challenge” fundraiser -- a movement to raise awareness and funds for ALS.

I’ve been watching from the sidelines and feel like I’m cheering the underdog on to victory. In a matter of a few weeks, ALS quickly inundated our news feeds. Pro athletes, musicians, politicians, big name celebrities and others are getting in on it, including Oprah and Bill Gates. I particularly liked Charlie Sheen’s video on Monday -- instead of dumping a bucket of ice water on his head, he dumped a bucket of cash -- $10,000.

ALS gets some much-needed and well-deserved attention and I think that’s great. Finally people are hearing about it, awareness and funds are being raised and our hope for a cure has been renewed. And it puts a smile on my husband's face when he hears, ‘This one's for you’.”

I was honoured to be asked by Russell, an editor or iVillage to give my opinion on the Ice Bucket Challenge. He said he had come across my blog and was interested in my writing and our lives with ALS. The article was well received and shared on the OWN Canada (Oprah Winfrey), W Network and CNT Network Facebook pages along with many others.

So needless to say, it’s been pouring buckets…literally, and this is where we are at today: Erin in recovering well from her hip surgery and she is almost off the pain medication which has taken a bit of a toll on her stomach. It looks like my dad’s cancer is contained and he will have surgery as soon as possible to remove the tumour. And regarding the Ice Bucket Challenge, millions of dollars have been raised and perhaps even better than that, more people are becoming aware of this devastating disease. Mike’s response spelled out in a quiet whisper;  i-s-n-t  t-h-i-s  g-r-e-a-t. 

To read my article on the iVillage website, go to: http://www.ivillage.ca/health/als-ice-bucket-challenge-nadine-sands-mike-disease

                                                   My dad in hospital last week

Erin, pre op

Erin, a few days after surgery

Fully rely on God

Monday, 4 August 2014

His Brains, My Biceps

The following is the start of a blog post I never finished from a few months ago…it’s a little dark. I’m okay now…things have a way of turning around:

I’ve been procrastinating for a while. I don’t want to write this blog post because everyone will know that I’m not as strong as I look; I’m not as strong as everyone thinks I am. I’m weak and thankfully God is strong and that’s the only reason I am where I am. I have definitely imagined myself in other places, but by God’s grace, I’m in this place…I’m in the palm of His hand.

I just thought I was dealing with a little bit of mental fatigue but it’s more than that. I call myself crazy sometimes, but my mind is just a little mixed up. I stare at the three toothbrushes and can’t decide which one is mine. I know its purple but sometimes it takes me a while to determine which one is purple…I think I’m losing it. It’s a bunch of stuff: fatigue, burn out, maybe depression. It’s the first time in my life I have ever thought, “What’s the point?”

There was more, but you get the drift. Those feelings didn’t last that long - about two months. But on a regular basis, I am mentally drained…I forget stuff all the time and I get a little mixed up. I often tell Mike that between the two of us, we make one great person…with his brains and my biceps (and the rest of my body) we really function well. Anyway, I didn’t tell anyone I definitely wasn’t functioning well during those couple of months, but my sister kept asking if I was okay and Erin was encouraging me to get away. 

I kept saying I was fine and I told Erin I’d go away for a day or two when Aunt Pat came…that was around April or the beginning of May. Pat was coming sometime in June. When she confirmed she was coming the last weekend in June, I asked Nathan to stay over night on the Saturday of that weekend. I knew between our two sisters and the kids and Mike’s regular home care support people, he would be well taken care of…even still, it’s really hard to leave him.

When I heard the workshop I was interested in attending was happening that weekend, I signed up. It was called “Inspire A Book” - a two day intensive for potential authors wanting to gain knowledge about writing and publishing a book. I was really excited about the workshop, but not about leaving Mike.

Leaving Mike for a whole day or more is agony, but not having a day away every once in a while is painful too. It’s the greatest internal tug of war I’m sure I’ll ever know. 

I’m going away again tomorrow for a couple of days. Erin is having hip replacement surgery tomorrow, so of course I will be with her for the day and I will spend the night with her at the UBC Hospital. Pat, Aileen and Sheila (Mike’s sisters and mum) are coming to help and with the help of my family as well, Mike and Erin will both be well cared for!

The Inspire A Book workshop was great…and exhausting. At the end of the first day, Julie, author and publisher of Influence Publishing (CEO), who led the workshop took me aside and told me she wanted to publish my book and handed me some paper work - a contract. She told me to read it over with Mike and she said she was really excited about my book.

After deciding to write a book and after researching everything I could about publishing, I was a little overwhelmed and then a friend told me about ‘Influence’, a company based here in Vancouver. I looked into it and thought it was perfect for me. I sent Julie a book proposal about a month before the workshop. I kept thinking, “This is really dumb…or maybe its pretty good”…I had no idea. Anyway, she liked it and I have embarked on something really exciting…telling Mike’s story in a book…our story.

What else is exciting is Erin’s new hip. The end of a long journey and the beginning of something great. And that’s a whole other story…

“The wind really was boisterous and the waves really were high, but Peter didn’t see them at first. He didn’t consider them at all; he simply recognized his Lord, stepped out in recognition of Him, and “walked on the water.” Then he began to take those things around him into account, and instantly, down he went…If you are truly recognizing your Lord, you have no business being concerned about how and where He engineers your circumstances. The things surrounding you are real, but when you look at them you are immediately overwhelmed, and even unable to recognize Jesus. Then comes His rebuke, “. . . why did you doubt?” (Matt 14:31). Let your actual circumstances be what they may, but keep recognizing Jesus, maintaining complete reliance upon Him…You do not know when His voice will come to you, but whenever the realization of God comes, even in the faintest way imaginable, be determined to recklessly abandon yourself, surrendering everything to Him. It is only through abandonment of yourself and your circumstances that you will recognize Him.” Oswald Chambers


Me and Mike and Erin and my mom at an ultimate frisbee game last weekend cheering for Nathan and Madison and all the players

We are all hoping and praying for the best possible out-come for Erin's surgery tomorrow and a for quick and complete recovery! Amen!



Thursday, 31 July 2014

Free Parking

Last week on Wednesday when I took Mike to his bath appointment at the hospital, there was no parking in the free, ten minute drop-off zone in front of the building where we usually park, so I drove around to the back. We have parked in the back a few times before, but not only is it all pay parking, there is only one wheelchair spot. Thankfully, the one wheelchair parking spot was available and for the sake of the five or ten minutes it takes me to drop Mike off, I wasn’t going to worry about paying for parking.

As I was getting Mike out of the van, I could see a couple that looked a little lost walking toward us. It was a beautiful older Indo-Canadian couple in bright coloured clothing, each walking with a cane. The man came right up to the van and asked if I knew where he could pay for parking. His accent was lovely, but his english a little rough, so there was some confusion when he also showed me the map of where in the hospital they had to go.

I pointed him in the direction of the entrance where the parking machine is and I told him we were going that way and I would help him. He and his wife started walking toward the entrance while I got Mike out of the van. We caught up to them and went in together and I showed him the parking machine. He told me his parking stall number and I punch it in along with the amount of time he wanted. I told him it was $6 and he pulled out a bunch of change from his pocket. He had a toonie and two loonies and a bunch of dimes, so I took the four bigger coins out of his hand and grabbed two loonies of my own and put the money in and gave him his ticket. He wasn’t about to accept my money and insisted I take all of his dimes. He showed me his map again of where he and his wife had to go, so we walked them to the elevator and I explained to them that they needed to go up one floor and then when they got out of the elevator, they needed to turn right and follow the hall to reception. They thanked us very much and we parted ways.

Yesterday when I picked Mike up from his bath appointment, we passed a man in the hall talking to medical personnel. I told Mike it looked like the man from last week and continued to our vehicle parked in the free, drop off zone in the front of the building. As I was wheeling Mike backwards up the ramp into the van, the tall, well dressed man with a bright blue turban appeared. He tapped his hand on the outside of one thigh a few times and with a big smile said his wife had her surgery and it went well. I said that was great and told him we were happy to hear it. He said, “Do you remember me?” I said we did; Mike nodded. He pointed to Mike and said, “What about him?” I told the man Mike was ill and that he probably wasn’t going to get better. The man came closer and with his finger pointing up, he said, “God is supreme!” Mike and I nodded in agreement. He said it again and then told us if we pray every morning and every night, everything would be alright. We nodded in agreement and the man said good bye and walked away.

As we drove off, I got a little choked up and glanced at Mike in the rear view mirror. He was already smiling at me - I smiled back and thought how God is very mysterious but He keeps it so simple at the same time.






Thursday, 24 July 2014

On Track

Mike’s sister, Moira and her husband Mike were here for a visit a few weeks ago. They came a day before Pat got here and left a few days before she did.

Moira isn’t a fan of flying and of course, I can relate…I think her aversion to flying is even stronger than mine. When I heard they were taking the train back home to Toronto, I thought, “What a great idea!”

I would love to take a train across the country. Mike and I had often spoke of doing that together someday. Not only would it be a great way to see the spectacular scenery of each province, but trains travel on the ground (so there's no fear of falling out of the sky like there is in a plane).

This is Mike’s message to Moira about a week after they left:

“So I guess you are home by now. Most people taking the train will say the rocky mountain portion is enjoyable and that the prairies are boring because they contain only vast amounts of tall wheat fields that are bland to the eye. I read a book years ago called ‘Who Has Seen the Wind’ by WO Mitchell. In the book the last chapter gives a description of the old grandma who is wheelchair bound and sits all day staring out the window at the wheat blowing in the wind. To all around her people see what appears to be a demented old lady staring into space but Mitchell's description gives the reader a different outlook at what she sees.”

Moira’s reply back:

“We just got in this afternoon as our train was 5 hours behind schedule due to a freight train that had problems ahead. Many times we stopped to allow for freight to pass, as they get priority. No problem for us, as we just sat up in the glass top area watching the scenery and talking with some of the train passengers who were very friendly. 
Although the prairies were not as spectacular as the rocky mountains, they had their own beauty, and we enjoyed watching all of it, including the forest and lake areas after that. We were allowed to get off the train occasionally in small towns along the way for some fresh air and a stretch while the train was serviced, and if you have ever seen the show 'Corner Gas', well it reminded me of that, with the size of the towns... 
The train was only really rocky one night, the rest of it was normal old fashioned train rocking, just like the olden days. You felt as though you had been on a train from the 50's, especially with some of the original bunks and refurbished end of the train lounge car with a cigar/beer table, original redone lounge chairs and decor. It was like that same place on the train in the movie ‘Double Indemnity’ with Fred MacMurray and Barbara Stanwyck, where he steps out the back door for a smoke.”  

The following is a poem written by Michaela for a school writing assignment:


My uncle is a train. Always staying on track. Determined, motivated and knows where it’s going. The outside is made of hard, strong metal yet inside is cozy and inviting. The inside has chairs lined in perfect rows which look hard but once you sit and stay a while you realize they have the softest cushions in the world. In the front the engineer shovels coal into the fire. He doesn’t stop to take a break or get tired. Instead he pushes to the limit in order to keep things running smoothly. Sometimes the train needs some helpers and sometimes it can go on its own. But one thing is certain, nothing can stop it.



Michaela, Elanna, Peter and Luke before the ALS walk in PoCo last month

Elanna, Michaela and my mom with all of us at the ALS Walk in PoCo last month



Tuesday, 8 July 2014

Keep Looking Up

Madison pointed it out to me when the three of us were out for a walk one day. She said she thought it was weird that I have a fear of flying, but I’m fascinated with air planes…every time one flies over, I look up. I’m actually not fascinated with the plane itself - I don’t care about it on the ground, its more about the machine in the sky. Madison was right, it is kind of weird. But to me, it’s just natural…I have looked up for as long as I can remember and have wondered why most people don’t.

We live about 50K away from the Vancouver International Airport, so we aren’t that close. It’s not like the planes are loud, but still you can hear them, so I look up. Sometimes I comment. I might say something about it’s colour or size or if it’s flying really high or low etc.  Sometimes I’ll pop a wheelie with Mike’s wheelchair so he can see too. And on a nice day or evening, I often say something like, “How wonderful it is to be flying into Vancouver on a day like today.” Because of course, Vancouver is beautiful…from the sky and the ground!

My dad looks up too. I’ve really noticed it lately at Nathan’s ultimate frisbee games…he and I are looking up while everyone else has their eyes on the game. My dad knows planes…he flew planes. He had a licence to fly at one time and has always had an interest in planes. While everyone else is watching the frisbee game, he and I discuss where that one might be coming from and the airline and he always knows what kind of plane it is.

I don’t really know why I have to look up when one flies over, but its like I can’t not look up.  Regardless, looking up when a plane flies by has caused me to look up thousands of times and looking up is a good thing.

I think the sky is a great reminder of how small we are and how big God is. It’s huge and it’s uncluttered, unlike some of our spaces, so it helps clear the mind and make troubles disappear for a while. The sky is also in the direction of heaven and they say its good to look where you are going, not where you have been.

Because of Mike’s neck weakness, the physiotherapist from GF Strong recently came and fitted Mike for a neck brace. Mike wasn’t crazy about the idea, but I insisted. I told him that transfers would be easier and when he stands he wouldn’t have to work so hard to lift his head up and keep his head up. I also told him van rides would be more enjoyable. Poor Mike is like a bobble head in the van when we go anywhere and I drive super slow and avoid as many bumps as possible…train tracks are the worst. 

Anyway, Mike isn’t crazy about his new neck brace. He feels a little suffocated, so he hasn’t worn it very much. He did wear it when he and I drove out to Mill Lake in  Abbotsford a couple of weeks ago to surprise Neil and Donna at the ALS Walk there (the week before, our “I Like Mike” team participated in the ALS Walk in Port Coquitlam). 

We laughed a lot on the way to Mill Lake because I was asking Mike questions about getting there and with his sun glasses on and his neck brace on, it was almost impossible for him to communicate with me. I couldn’t see his eyes and he couldn’t nod his head yes or no. I’d say, “Smile if I exit here…smile if I turn left here.” Trying not to smile, made Mike smile more, so needless to say we got a little lost but we had fun.

I have never been more in awe of Mike’s determination as I am now when I watch him lift his head. When we get him standing up and leaning against his chair, it takes all his might to lift his head. Once it’s there, he smiles. Usually it falls back a little and then he’s looking up…and smiling. Sometimes I help him lift his head and sometimes I hold his head for him, but I also like to hold his feet and support his ankles when he stands, so this can be a bit of a challenge. Last week when Pat was here, she held Mike’s head and I held his feet. Elanna and Madison and whoever else might be around also help sometimes with this juggling act…its team work at its best!


All I can say is, “Mike, you blow me away! I am so proud of you and so inspired by you! Keep looking up!”



                                                             Neil's Team

                                       Neil and Mike at the ALS walk in Abbotsford

                                  The "I Like Mike" Team at the ALS walk in Poco


                                                                  

Sunday, 22 June 2014

Go West Young Man

Mike moved from Ontario to BC in 1985. He and a friend hopped on a bus and made the journey as far west as it went. It was for the adventure mostly, but Mike always said he had to come to BC to meet the girl of his dreams…he said he followed his heart half way across the country to find me.

Mike’s friend stayed for about two weeks and when his money ran out, he returned home. But Mike doesn’t give up that easily - Mike stayed and signed up for the army. While he waited for the summer session to start, he found a cozy spot in a lovely bush on Royal Avenue in New Westminster. We would drive by when our children were little and Mike would say, “Look kids, that’s where I lived when I first moved to BC.” And they would point and say, “In that big building right there?” and he would point and say, “No, in that bush over there.”

Mike had been in the reserves in Ontario and decided to sign up when he got to BC. He joined the Royal Westminster Regiment and that’s where he met fellow ‘Westie’: Bob. Funny thing, our son Nathan become a Westie too and funnier thing, Nathan had the same commanding officer Mike had twenty-five years earlier.

Anyway, Bob became Mike’s first BC buddy and when their time in the reserves came to an end, Bob invited Mike to move to his home town; Maple Ridge. This is where Mike eventually met his true love - ME! 

Mike and Bob first lived in an old run down house in town on Macintosh St. with a few other guys. They each kicked in $80 a month to cover the rent. From there they moved to the “Shack” — five guys and a cat named ‘Mow’ (rhymes with 'how'). Poor Mow could have done better on his own. We were always surprised that cat kept coming back. Those guys never fed Mow, so he was a great little hunter and always appreciated when one of the female visitors would bring treats or a can of cat food. Rent at the Shack was eighty bucks (each) as well. The Shack is where Mike and I first met. After the Shack was torn down, Mike and Bob moved to a small apartment over a corner store in Port Coquitlam. It was just the two of them…no cat and I’m sure rent was more than eighty dollars. 

Mike and Bob were good friends for a long time but eventually lost contact. To Mike’s surprise, he received a Facebook message from Bob the other day. Bob said he was so sad to hear through a mutual friend that Mike wasn’t well. And said he would love to get together some time.

Mike’s reply:

Hey Bob, 
Its good to hear from you. I hope you have been enjoying a good life. I knew you had gotten married and worked with boats but it's been a long time, so perhaps things have changed. You will have to fill me in with the details. As you have heard I am not doing so well. I have ALS (Lou Gehrig's Disease)…I've had it for the past four years. They give you three to five years to live, so you can do the math. I am okay with my situation - I have had so many good memories including the ones I have with you. Everyone has to go sometime...the trick is to make sure you pack as many good memories in as possible and I think I have done that. Also, I have a strong faith in God and look forward to going to Heaven. Anyway, let me know how you have been doing. Mike

John 14:2-4 - My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. You know the way to the place where I am going.”

Mike and Bob leaving Nanaimo, BC after completing summer session in the army, 1985

With Mike on your team, you could stand around and watch.                                                                Mike in the reserves in Barrie, Ontario, 1982

Mike: a lean, mean fighting machine! 1985

Nathan as a Westie, front and centre and a little tired after a weekend assignment below