Jack-Baumgartner-2-PS800

The Wrestler

This painting by Jack Baumgartner portrays Jacob Wrestling the Angel from the book of Genesis. It’s a central metaphor for this blog – wrestling with life, health, urban issues, and even with God.

Finally Home (MS, homecoming, spring, feeling old, swearing, and Lent. Part 1 of 3)

Last Wednesday, after one year, one month and 12 days of being away, I finally moved home!!! It turns out it was the first day of spring. Even though I expected to be home by Christmas, I felt as though maybe moving back on the first spring day was somehow providential.

Bladders, Botox and Ash Wednesday

As I’m waiting in the hallway for that half hour to freeze my bladder, I see that there is a window overlooking the city. So I wheel to the window and wait out my half hour while looking out side. The CN Tower is there. (After close to 30 years here that tower still takes my breath away). The sun is rising. The sky is blue. I am overlooking the city that I love so much

That time I got stuck in the garbage room.

So I go in the room, the door closes and latches behind me, I throw out my trash, and then push the button to get out. Herein lies the dilemma. The button did not work.

Feeling sorry for myself

So I wrenched my neck. I wasn’t doing anything out of the ordinary. It was Valentine’s Day and Erinn and I were having dinner together. We were reminiscing about how we got engaged on this day more than 20 years ago now. I had cooked what I thought was the most amazing meal ever; barbecued chicken legs. Who wouldn’t want to marry me with this kind of offering, I thought:)

Our 21st wedding anniversary. (One year and three days away from home)

On our 20th anniversary, one year ago now, I was so sick I could barely function. And I felt incredibly guilty to not be able to properly celebrate 20 years married to the incomparable Miss Erinn. When we woke up beside each other the very next day, January 25th 2018, I finally had to admit I cannot go on any longer without help. So I leaned over to Erinn and said it’s time to call an ambulance. That was the very last time I slept in my own bed and woke up next to her.

Clarification

So, I’ve been made aware that my last blog can be read ad a bit deceiving when it pertains to me moving home. The move is still close, but not as imminent as I fear I have unintentionally suggested. I fear I've been a tad impatient and a little hasty. The finish line is definitely in sight but the very last few steps are kind of excruciating.

Happiness is overrated

"Happy new year!" I hear it over and over again. And yes, I say it over and over again as well. That’s just what you say to each other I guess. But really, if happiness is the measure of whether or not the year is good, I would say that last year was a bust.

Homecoming. 325 days from home.

I was taking the bus downtown. I left the neighbourhood I’m currently staying at, which I do like (though it’s kind of hipster-ville which admittedly creeps me out at times:), scooted aboard a bus and headed towards one of our SallyAnn shelters. As the bus passed the very touristy Yonge Street and headed into the downtown Eastside of Toronto, we headed into ‘the hood’.

Hospital Beds and Beeping Machines (a guest piece from my daughter as to how she views life with MS)

By Cate Oxford I woke to the sound of a knock on my bedroom door. I had been in that strange realm between asleep and awake, when the world is a foggy kind of grey. I looked at the clock, it was early, too early. Too early for everything to be okay. I look to see my mom standing at the door. She opens her mouth. “Hey, sweetie. So, dad couldn’t get out of bed this morning. We had to call the hospital. I just wanted you to know before the paramedics show up.”

I’m 49!!! (308 days away from home)

So I turned 49 yesterday. I am now one day into my 50th year. And yes; it’s kind of freaking me out!

Dependancy. 287 days away from home

So I thought I’d share another slight glimpse into what a day in my life looks like. At the very beginning of each day I am completely dependent on somebody coming to me and helping me get dressed and out of bed. So if that person calls in sick or is late, I simply need to wait. I am utterly dependent on them.

Exreme ups and downs. Reflections at 275 days away from home.

AnyWho, now to day-to-day life stuff. Our lives are unbelievably full of ups and downs but this has been an unusual week full of extreme highs and lows. I won’t get into the details of either of those except to say that the lows hurt me deeply and the highs encouraged me greatly.

Making the Best of it. 264 days away from home

So my power chair has an odometer on it and it showed me that I crossed the 1000 km mark this week. For whatever reason I love that it keeps track of how far I’ve gone. I’ve gone pretty far. It’s a constant reminder that this bloody illness is not keeping me down as of yet...

Thankfulness amidst the storm. Day 252 away from home

It would be impossible to keep a record of all that’s happened in life, both good and bad, but this thanksgiving weekend in particular I wanted to focus on my gratitude/thankfulness. It would be easy to focus just on the deficits of life, but man I have so much to be thankful for.

Labyrinth Adventures

Well this morning was quite a start to the day. I did my usual morning routine of the three S’s, with some help from my personal support worker of course (Well actually I didn’t shave but you know…)

No swimming at the lake this year; 230 days away from home

For at least the past 10 years we as a family have been going to a camp to spend a week together. It has become a part of my annual rhythm of life to go there with other family friends, leave behind the day-to-day grind, enjoy being in nature, and relax. One of my favourite things to do there was to swim every afternoon in the lake. Something about floating around in lake water really does it for me (especially being able to pee guilt free in the water...) I think partially because it evens the playing field. When I’m in the water I don’t need to walk and I seem to be able to swim just fine. Like everyone else, I’m simply swimming around without the need of a mobility device.

Day 222 away from home…

The other day one of the people I am getting to know here at Bellwoods showed me her garden. She has been in a wheelchair for her entire life due to a disease that she was born with. She’s very smart and kind though sometimes people look down on her because they judge the disease and not the person. But I digress...

I will not let you go until you bless me

When I saw this picture for the first time, possibly a decade ago now, it pierced my heart. I just couldn’t forget it. It really spoke to me in that I felt as though it was a picture of my own story. I promised myself that I would someday tattoo that picture on my arm. Yesterday, after way too many years of thinking about it, I finally did it.