Resetting the Dial

At fifty-nine, I felt quite certain that I knew myself, that I had accomplished, defined and established.  It seemed that illness had dictated a framework within which my remaining time would unfold.   I had become a non-entity in my former career life, a ghost to many friends.  My children mourned the loss of their vibrant mother and settled into lowered expectations.  My husband took up a new role. Life, like a river, flowed around me while I stood still.

Black and white houses
fade into winter’s landscape –
humble surrender.

Life, however, has no intention of letting us settle.  It drives us through the darkness to find new light, and in the depths of our despair, my husband and I reached out to possibility and gambled on a risk.  We sold our house, and bought a home on wheels, and we set off into the unknown: reset the dial from ailing seniors to snow-capped adventurers.  In that single act of defiant deviation, like throwing open the doors of a jail cell, we found rejuvenation.

As light in darkness
transforms mundanity, so
too am I salvaged –
revelation turning back
the icy pallor of winter.

(Written for this week’s challenge: deviation.  We come together with family  to celebrate an early Christmas this weekend and then mid-week will hit the road for another chapter in our rambling life.)

Let’s Just Say It Didn’t Happen

I haven’t stopped laughing since it happened.  By the time we got back down the mountain and found a place to eat (and relieve ourselves), I could not contain my giggles.  The poor waiter must have thought I’d lost my mind. But, I’m getting ahead of myself.

logoIf you happened to catch yesterday’s post, you’ll know that we are currently in New Mexico and the goal for this day was to find a tapestry that we can hang over our bed. As planned, we rose early and went for breakfast to a nearby restaurant:  Salud!

We picked Salud! out of convenience and were surprised to find that it offers a number of gluten-free and vegan options, which made my day.  Speaking with the owner, we mentioned that we wanted to explore and had hoped to go birding at Dripping Springs, a state park nearby.  He informed us that because the government had closed down on Friday, all state parks would be closed, but he did suggest that if we were willing to drive a couple of hours out, we might consider Silver City.  I googled it and it looked amazing – well worth the drive.

“Take the back roads, if you want to see wildlife,” he advised.

th-2So we set the GPS for Silver City and thought we’d make it a day.  Silver City has shops, restaurants, and spectacular views.  I was excited.

We stopped for gas, then looked for the exit the man had told us about, passing the one recommended by GPS.

“The next exit is 52 km,” I noted. “This can’t be right.”  I entered our intended destination into my phone and a different route popped up.  “Let’s try this one.”

So we did.  Drove two hours, through a military missile testing area, past small towns and up into the mountains where snow had fallen and it was beginning to look a bit like Northern Ontario.  Two kilometers from town, GPS announced:

“In two kilometers park your car at the side of the highway.  You will have to walk the rest of the way to your destination on the left.”

“What?” Ric and I both said in unison.  “That’s not right.”

I looked at my phone.  I had mistakenly typed in Silver Springs, not Silver City.  I had brought us two hours in the complete opposite direction of the quaint and scenic town we had planned on visiting.  Hungry, desperately needing to find a washroom, we found ourselves smack dab in the middle of wilderness, on top of a snowy mountain, very much alone.

th-1All the way down the mountain he made me take pics of the signs that said “Icy” and “Watch for snowplows”.  He made me take a picture of the blowing snow and pine trees.  I took some lovely shots of the mountains.

Ric did not laugh.  He did not get mad either, surprisingly.

“Well,” I offered.  “You did say you wanted adventure.”

“Yes, but not miss ….”

We did share the story with the waiter, who joined in on the joke.

As I said at the beginning, I’m still laughing.  Oh, and when I got home to process my photos – the camera hadn’t worked.  No photographic evidence of our misadventure.

So, really, we can just say it never happened.


RV-Able: The Fear Factor

“Don’t you get scared?”

Yes and no, I think.  Many things frighten me:  a decline in my health, the loss of my spouse, something happening to one of my family members while I’m so far away from home.   This is not what my mother is referring to, though.  At 90, her view of the States is formed by what she sees on television:  mass shootings, protesting, rioting, and a president, who according to her: “grows crazier every day.”

While I have some ability to cull through media hype, my mother is overwhelmed by what she sees.  We are Canadians, and while we share a continent with our American friends, our countries could not be more different.  Guns, for instance, are not something we argue about – we just don’t have them to the same extent as our American neighbours.  The idea of travelling in a country where the number of guns is greater than people is somewhat disconcerting, but not reason enough to stay home.

“We have the right to bare arms,” my husband likes to joke.  “I’m wearing short sleeves now.”

“No, Mom.  It’s fine here, really.”  I wish I could show her the beauty we have encountered, and demonstrate how friendly people have been along the way.

“You stick together?  Lock your doors tight?”

“We do, Mom,” I reassure her, but don’t go on to explain that I have the same phobia at home.  I watch way too many true crime dramas.  If Ric pops into a store and leaves me alone in the car, I lock my doors.  Doesn’t matter where I am.

She was like this was when our youngest son married a girl who also happens to be Muslim.

“This is how it starts, you know,” she warned me.

“How what starts, Mom?”

“Indoctrination.  Next they’ll be recruiting him.”

“What?!”  It shocked me that my mother could be so closed-minded, so obviously ignorant, and then with sorrow, I saw through her eyes what so many others see:  I saw the root of Islamophobia – the irrationality of fear manipulated by power and press.

“You have that all wrong, Mom.”  I might have been a bit harsh with her, but this was my son, her grandson, she was talking about, and I couldn’t believe that propaganda could overpower what she knew to be true of him.

“Fear is like a big, old dog asleep in the doorway.  You just have to step over it and get on with your life,”  I used to tell my children.  Bottom line:  I refuse to let fear dictate my life.

Every day,  Ric and I are choosing to face the unknown, and so far, it has been incredible.  There is so much to see, and learn, and experience, and yes, I will lock my doors, but I will not close myself off from this opportunity.

“Truthfully, I envy you,”  Mom concedes.  “It’s quite amazing what you’re doing.”

“It really is, Mom.”

And, yes, I’m scared at times, but a little bit of adrenaline is good for the soul, don’t you think?





RV-Able: Don’t Back Up!

The English language is full of expressions that have more than one application.   To back up – along with its many forms – is one of them.  For example, as in my last post, backed up is a euphemism for excrement that is not following the protocols of natural processing – or in our case, a blocked sewer line.

To back up can also mean to get behind, as in to support.  Or, it can mean to reverse one’s steps, perhaps to start again. We back up our work on the computer to save it.  To get one’s back up is to be offended.

When it comes to RVing and towing a vehicle, back up, as we’ve discovered, is not something you want to do, as today’s escapade illustrates.

Spurred on by the success of our first day’s travel – complete with a custom’s officer who kindly overlooked the two strips of cooked bacon we’d not declared – we decided to push even harder today.

We’re spontaneous like that…or, is it excitable?

Anyway, Ric went to bed just after 7:00 p.m. and announced that as soon he woke up, he’d make a coffee, and we’d pull out.

“You don’t even have to get up,” he told me cheerfully, obviously pumped to get going.

We’d parked at Walmart again, and left the tow attached for easy take off.

1:20 a.m., not long after I’d finally fallen asleep, Ric woke up.   Riding on his wave of enthusiasm, I got up too, and coffee turned into route planning, and eventually we pulled out of Algona, Indiana just before 4:00 a.m.  We had a shared goal in mind:  get to the warm weather.

The thick wall of fog that accosted us as soon as we turned on the lights, was unanticipated.   Road signs were only visible when it was too late.

“Let’s find a truck stop,”  Ric suggested, “I need gas.”

We have an app for that – in fact, we have three or four apps for that – but given my own mental clouding in the morning (especially after little to no sleep), none of them were helping.

“It would be better if I could just read the road signs.”

I persevered and we did manage to find a Pilot about 1/2 hour into the trip.  Ric pulled into the fuel lanes, overshooting the pump.

“I’m going to have to back it up about five feet,”  he said dubiously.  Reluctantly he put the rig in reverse and to our delight we discovered we have a back up camera, and it was a piece of cake – motor home and truck moved as one.

“My mirrors are icing up,”  Ric said upon reboarding.  “I’m not comfortable driving with fog and ice.  Let’s pull over to the restaurant and have an early breakfast.”

Following the advice of the gas attendant, we pulled back out onto the road and approached the restaurant from a separate drive.  A long curb at the side of the lot served as a parking spot.  The waitress assured us that we were fine and that when it came time to leave we could drive around the building and exit.

Food just exacerbated my exhaustion and with a sudden sense of doom, I left Ric in the restaurant and headed for bed, where I collapsed into sleep.

Not sure how long I’d been out when I heard the engine engage and felt the bus lurch forward, slowly creeping around the corner, and then coming to a sudden halt.  With horror, I realized that being in the back of the motor home while it’s moving is akin to being in a boat’s cabin at sea – nauseating.  Suddenly, we were backing up and I heard the unmistakable sound of metal on metal and a loud crunch.

“Stop!”  I yelled, both for my stomach and the vehicle.

Ric exited and I followed.

“We have a ouchy,” he said sheepishly, indicating the left rear panel of the RV.  “Luckily it didn’t knock the tail light out.”

Scratch“What did we hit?”

“The truck.”

The truck has a few scrapes but nothing that won’t come out with polish.  “Thank God for that.”

“Yep, apparently we can’t back up around corners when the trucks wheels are locked in one position.”

Seems the waitress had wrongly informed us – the other side of the building was nothing but a dead-end.  With a fair amount of finagling, Ric eventually managed to separate the two vehicles and turn the bus around before setting it all up again for take off.

By the time we were underway, the sun was up and the curtain of fog was slowly dissipating.  An hour down the road we pulled into a rest stop and both slept.

At the end of the day, our ten hour travel time only landed us three and half-hours from our departure – still cold, and exhausted.

On the upside, we are in Effingham, Illinois at a lovely campground.  A fitting place to stop for the night, given our effing day.

Universe, if you’re listening:  We are done with backing up.



RV-Able: A Question of Wellness

“I had lunch with some of your old colleagues yesterday and we were talking about you.”

Never a good start to a conversation when your relationship to the mentioned parties ended the day you stopped working.

“Oh, who?”

The people mentioned are acquaintances, only one actually worked with me and it was before ME/CFS struck.

“I told them you are heading for Texas.  We all agreed you must be doing much better to be able to do that!”

What is it about this conversation that riles me so?

First, I’m pretty certain not one of these people actually has a clue about my disease and what I go through on a day-to-day basis.  They know as much about my personal life as I do theirs – nil.  I would love to have tea and share experiences in person, (haven’t heard from most of them since disappearing from the work place) just please don’t make me the subject of your chats with others.

Secondly, it’s one thing to have someone tell you face to face that you look well, but to assume I am better without knowing all the facts – well, that makes you an ass, as the old saying goes.

“The big push will be to get you back to work,”  I remember my doctor telling me. She went on to say that work is the last place one needs to go when recovering from a long-term illness.  Social interaction is especially important to help normalize again, and then when able, to travel.  Work is so much more stressful, and despite what insurance companies want us to think, does not add to quality of life which is so essential for healing.

That none of these able-bodies individuals understand that, I get.  From their viewpoint people on disability get to lounge around all day and do fun stuff.  (I’ve sat in so many meetings where I’ve heard this about those away on long-term disability, as if being ill is something to desire.)  What infuriates me, is that the messenger, a so-called close friend, hasn’t even spent any time with me in nearly a year, and yet, she is making a pronouncement about my condition.

I cut the conversation short, of course.

“She says I must be so much better,”  I tell my husband when he asks about the call.

“Twenty percent,” is his response.  “You are maybe twenty percent better.”

Deciding to sell our house and live full-time in a motor home is my husband’s creative solution to managing my disease.  Together, with input from my doctor and psychologist, we have developed a plan to embrace life despite the challenges we face.

th-2I still have ME.  I still struggle on days to get out of bed.  My legs continue to give me problems.  My brain doesn’t work right.  Some days I feel worse than ill and pain is out of control.  I have to watch what I eat and how much stimulus I subject myself to, and despite all this, I’ve decided to keep on living.  Worse thing that happens is that I die trying.

I guess that’s too hard of a concept for others to understand.  Easier just to pass judgment.




RV-Able: Flexibility Required

“I’d like to be on the road by 10:00 am,” Ric told me the night before our five and half month stay at the beach trailer park ended.  “There are high wind warnings for tomorrow afternoon, so we should be at our destination before they hit.”

I had pushed myself the night before to get the dishes packed away and all the loose articles stored for travel.  Despite Ric’s reassurance that it wouldn’t take very long, I am well aware of how quickly I tire (a symptom of ME/CFS), so I allowed myself extra time. He decided to leave the outside stuff for morning.

We awoke to a grey and damp day.  My body complained, but I waded through the slush to be ready.  Ric, a chronic procrastinater, waited for the last minute to start his tasks.

“It will only take me half an hour,” he promised, stepping out into the blustery day.

Having pulled in the slides on the RV, I lay on the couch, and listened to the sounds of curious neighbours stopping by to ask questions (they are all permanent residents at this park) and then I heard my husband curse.  We had a flat tire.

A flurry of male voices gathered as the problem was addressed, and I watched as our scheduled time to leave passed.  After a bit, I gave into my fatigue and napped.

Just after eleven, I awoke and looked out to see Ric, soaked and covered in mud still working at putting things away.  I threw on my coat and went out.

“Almost done,” he said cheerfully, blood dripping from one hand.

“Do you need something for that?” I asked, taking in his state of disarray with alarm.

He glanced at his hand then rubbed it on his shirt.  “All good,”  he said. “I’ll just run the truck to the road, then we’ll be underway.”

“I’ll drive the truck,” I said firmly, surprising both of us.  At least it was something I could do…well…at least something I might be able to do.  I haven’t driven in over three years – another side effect of this disease.

Driving the truck was easy – the speed limit here is only 8 km/hr.  Getting the RV out was going to be the tricky part.  We’d arrived at the end of the winter months before the trees had leaves and even then it was a tight fit.  To be honest, I was just happy to be an observer at that moment, but Ric drove it like a pro.

I eased the truck up behind and waited in the warmth of the motor home while Ric and another man hooked up the tow bar.  The rain was coming harder now, and when I checked the weather, it called for high winds at any moment.  Our plans were not going well.  Hooking up the tow seemed to be taking forever.

It was after noon when we headed out, and my drenched husband didn’t even take a break to wash up before pulling out.

“Are you okay?”  I asked, a question I would pose many times as the wind tossed us around on the road, and then again as we arrived at our destination and the now torrential downpour pummelled him while disconnecting the truck.  Every time, Ric had the same answer:

th-3“Of course, I am – it’s all part of the adventure!”

Hmmm, I thought to myself, I guess I need to rethink my definition of adventure. 





Stumbling Start

“How do you feel about everything that is happening?”  my therapist asked me, last visit. 

“Good,”  I responded, without hesitation.  “I feel as if I’m breaking down barriers:  embracing life and possibility, despite my illness.”

Yesterday, I promised to rest, but there were boxes in the way, and nowhere to sit, so I unpacked one, then decided to clean the bathroom, and then my sister called to say they were dropping by, so I unpacked another and stacked the rest out of the way to make room to sit.  Then I tackled the outside, tidying up as best I could and dragging out the lawn furniture.

“Illness doesn’t go away,” she reminded me gently; “but you are choosing not to let it define you.  Do you think you’ll be able to handle it?”

“I am looking forward to the autonomy – not having to depend on help all the time.”

I ignored dizziness, racing heart, a mounting headache, and pushed on.  This venture is about independence, after all, I told myself.  I need to be able to do it all.

“It will not be without challenges,” she added.  “You will need to establish a new rhythm, not just for yourself but for your marriage.”

Later, when Ric asked if I wanted to go for ice cream, I ignored the mounting fatigue and said yes.  The need to celebrate our transition outweighed physical health.

“Yes,” I agreed, “and my experience of life is that nothing changes unless you are willing to shake it up.  I feel like we are grabbing hold of the helm and charting new waters.  It will be good for us.”

This morning, the fight is gone out of me.  It is nearing noon, and still my body clings to sleep.  I managed to stumble to the counter and make a tea, but am back in bed.  That short journey caused me to sweat.

She hadn’t said it, but I saw it in her eyes as we bade our farewells:  “Take care of yourself.  Enjoy the adventure, but remember to do so with a modicum of restraint; ME/CFS is a real disease, and like many issues that plague us, will not be outrun.”

(Image is another from Ric’s collection of sunset shots:  Lake Huron, Ontario)