Tuesday, 28 January 2014

Till Death Do Us Part

I have really gotten used to living this way; that is with ALS. I kind of forget what normal is. This is normal now. Sometimes I remember that ALS is going to steal Mike’s every last breath and take his life, although I'm still not totally buying it. I can't see it; I don't believe it...most of the time. I can't imagine my life without Mike. I'm not ready to let him go today, but I pray that when the time comes, I will be ready. I'll send him off with my blessing and I'll watch him fly away. It almost sounds romantic when I put it like that, but it will be tragic. Sorrow also comes to mind, but so does joy and when it's time there will be that as well. I know because the two, sorrow and joy have commingled in my life since Mike's diagnosis and it's the joy that has been my strength.  ("The joy of the Lord will be your strength" from Nehemiah 8:10)

I was only 19...just a girl when I said "I do". I took Mike and he took me for better or worse, for richer or poorer, in sickness and in health, till death do us part. I didn't really know what that all meant when I agreed to it 25 years, 7 months, and 4 days ago, but I do know what it means now. The last bit though, the part about "parting", that's a little hard to understand. Mike and I are one, like a piece of fabric; threads woven together. How does that just part? Is it like a ripping, a tearing, a cutting? Sounds painful! I know it will be. It already is. But the joy of having him in my life all these years will remain...and so will the love.

Sometimes I wonder where we would be without ALS, and believe it or not, I question if I'd go back. Don't get me wrong, of course I wouldn't wish ALS on my husband or anyone. But what we have learned is invaluable and what we have overcome and what we have achieved is incredible and how we have experienced God and the joy that comes from knowing Him, trusting Him and abiding in Him is indescribable...I wouldn't trade that for anything. What is also indescribable is the love; God's love, the love of family and friends and our love for each other. That doesn't part when we do, that lasts forever.

My sleeves are covered in tears as I write this and I wonder if it's too sad to share but its part of our "normal" lives with ALS, so here it is. I hope it will inspire all to appreciate every minute, to look to the Lord and experience His joy which brings strength and to cherish the love.

” It happens every time you praise God. It is instantly felt in His presence. This joy comes from a source that never runs dry. It becomes your strength. No matter what else is happening it's that underlying feeling that everything is going to ultimately be good." Stormie Omartian

Wednesday, 22 January 2014

Hidden Treasure

We live in a fairly small town and it seems everywhere I go I bump into someone I know who asks me about Mike.  It is nice so many people care, but I never really know what to say. I usually say he is well, but that can be a little confusing sometimes. For example, while Christmas shopping at Target last month I bumped into a fellow soccer mom from years ago. She was pleasantly surprised when I answered her question, "How's Mike?" with "He's great!” She assumed his illness wasn't progressing. I had to explain that his illness is progressing, but he is really good...on the inside.

It's more than the positive attitude I have written about so many times. He is the same "Mike" inside...funny, cheeky, silly, happy, smart! Even more than ever because he has all this time to focus inward, unable to focus or dwell on his outside, like people have a tendency to do. He has had time to think about what is important and what isn't. He has contemplated life...and death. There is prayer, reflection and examination going on inside. While the outside is weak and frail, things on the inside have been shaped, sharpened and shined...I think of it as hidden treasure.

There is a chest of treasure inside of him and I get excited when it’s opened. On a regular basis, communication is simple in one way and often challenging in another way for Mike and I and anyone interacting with him. He will look to his right toward the thermostat if he wants the heat on or off. He looks further to the right, over his shoulder if he wants his lap top. He will open his mouth slightly and look to his left if he needs suction. Saying "P" and looking toward the bathroom of course means he needs to go pee. I can understand quite a bit by the look in his eyes, the lifting of his eye brows, a certain nod or motion of his head and of course a big smile. We usually get by this way and it's good.

But what I love is when that treasure chest is opened and the wonderful world that exists in him is revealed. For instance, a while ago, Mike had a reaction to a new medication that kept him awake all night (several nights). We were both exhausted and frustrated because he was so itchy and I, the scratcher was unable to keep up with the itch and unable to understand where to scratch next. He was also restless and uncomfortable and trying to tell me what he wanted was gruelling...for both of us. I was so mad at myself for not knowing what to do. The next day, I had a Facebook message from Mike quoting George Costanza from Seinfeld. It said, "It's not you, it's me!" I laughed and cried. When he writes me a note on his computer or sends me a Facebook message, I think "there he is…there's my Mike".

I love hearing from him. He sends me messages to explain any earlier miscommunication. He'll write, "What I was trying to tell you before..." I had a message a few weeks ago from him relaying details of a dream he had. I'll be out and I'll get a message from him with his numbers for a Sports Action ticket. He messages me to tell me I'm doing a good job, that the insurance is due on the van and what he thinks we should give a dear friend in need for their birthday.

His last contribution to the blog, Ahoy Matey (June 23) reveals to us that treasure inside I speak of. The story contains historical information, education, wit, and a few corny jokes that he has told a few times before...it's Mike! I loved reading that story then and I love it now.

Mike has a new communication device called a DynaVox. He uses the head mouse he has been using on his lap top to control the cursor and it's completely hands free. There is a key board of the alphabet and a variety of common words to choose from to spell out whatever he wants to say.  He can hit a "speak" key and the device will speak out loud what he has written.  On the weekend, with a group of us here celebrating Mike's "birthday week", we had a great time listening to Mike. He had us all in stitches. Our four year old granddaughter was especially amused. She hasn't really had any conversation with Mike. She was surprised and a little shocked to hear from him.

The following are pictures from the video I took of Leah listening to Mike (I was unable to up load the video to the blog). Mike was telling Leah to put the crickets she had in the turtle aquarium (she and her dad bought the crickets for her frog to eat but she wanted to keep them as pets instead). Mike was telling her that "turtles like to play with crickets; they ride them on their backs". She got a real kick out of that!

Therefore we do not lose heart. Though outwardly we are wasting away yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for is an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary but what is unseen is eternal. 2 Corinthians 4:16-18

It was Mike's birthday last week (Jan 16). In his blog post, Hawaii Five Old, written two years ago, Mike tells about his achievement of reaching the age of fifty. He said that anything beyond 50 was icing on the cake (birthday cake that is). So I guess the last two years has all been icing. What a great way to look at life...pretty sweet! Hawaii Five Old is our most read blog post by the way...such a great read! His closing statement is: "We can't regret growing old as it is a privilege that many people do not experience."

Happy Birthday also to our friend Neil Hemming (Jan 15) who is also battling ALS...thanks for the
laughs buddy...keep up the good work!


Friday, 10 January 2014

Here's Hoping

The other day when I woke up, I laid in bed for a little while. I didn't feel like getting up. I could see through the slats of the blinds that it was still dark and I could hear the rain. Suddenly I had Seasonal Affective Disorder (SAD) or at least I figured this is what it must feel like. I talked myself into getting up even though I didn't really have a choice. Mike and I have certain routines on certain days and on this day and three other days of the week I get him up early to accomplish certain tasks before the home care nurse comes. I can't roll over and go back to sleep...it's not an option. So I had to ignore feeling blue and begin the day.

When Mike and I finished our routine and the home care nurse took over, I was sure I could hear my bed calling me back. As tempting as it was to return to my cozy little hiding place, I resisted. I never go back to bed and I wasn't about to give in this time regardless of how tired and un-motivated I felt. I went for a walk instead. I needed to go to the store for something anyway so on with the rubber boots and out with the umbrella and off I went. On a dry day, walking to the store or anywhere wouldn't be unusual for me, but on a rainy day, I normally drive. Feeling lacklustre, I figured some fresh air would do the trick.

I started off pretty slow, but still went the long way. I realized I was going to need a lot of time to shake those blahs. I prayed and pondered and praised the Lord with a little bit of singing. By the time I got to the store I was feeling a lot better. I took an even longer route home and enjoyed walking through some neighbourhoods Mike and I have enjoyed walking through so many times together. I was glad I brought an umbrella because it was raining harder now, but that didn't bother me at all. I quite liked the rain...it made me hopeful for sunshine. I started to think about hope and the more I thought about it, the more hopeful I became. The more hopeful I became, the more skip in my step and my posture improved. I got wet on the final stretch home though...I put my umbrella down because it was blocking out the little bit of sunlight breaking through the clouds.

I don't know where my hope was when I woke up that morning but it's back. That was Tuesday. The next day and the next day and the one after that; same darkness, same rain, but lots of hope!

Since Mike's ALS diagnosis almost three years ago, we have clung to hope...we stick to it like glue! Whether it's a cure for the disease, a miracle for Mike and Neal and others with it, or whether it's another Christmas together or springtime...we have hope and we aren't letting go!

I love Merriam-Webster's definition of hope: ”To cherish a desire with anticipation and to expect with confidence”. With hope anything can happen...or at least something can happen. Without hope; dismay.  Hope is a reason to get up in the morning...hope is a rope...hope trumps impossible!

Happy New Year everyone! Here's to a year filled with HOPE!

A super man, the late Christopher Reeve said: "Once you choose hope, anything's possible."