Decision Made

Monday we were excited about the possibility, but then overnight doubts set in for me. He talked me through it, assuaged my fears. The house around the corner with the beautiful views also needs work.

We called the owner for another viewing. Ric was right. My concerns were not founded. I was in. But then Ric had a change of mind. We talked it out.

Disability limits my financial input. The burden is on Ric. I don’t want him to stress over a move. I tell him so.

“But the house would be so much better for you,” he says.

“I’m fine,” I tell him. “The most important thing is that we are happy, and we are, right where we are.”

“I’ll give it one shot,” he decides. The owner is asking an exorbitant price. We both agree not to stretch beyond what is practical.

Ric goes to meet with the owner. The dogs and I wait. I anticipate our bid will fail.

Backyard through screened door off kitchen.

The owner accepted our offer. The house is ours. Now we just have to get this one ready for sale.

Send energy. I’ll need it.

Turning a Corner

The kids gave us a Shutterfly gift certificate for Christmas. For all your amazing images, the card read.

“How does it work?” Ric asked.

I had no idea, so I visited the site. There are endless possibilities. I settled on a mug for Ric with six of his favourite photos, a travel mug for me with mine, and some magnets. I was so excited by the thought of actually possessing something with our images on it, that I forgot to apply the gift certificate.

So, of course, I had to order more. The good news: once you place an order, Shutterfly keeps sending you great offers to entice more business.

This time I decided to make a book of my images with poetry (it was a free offering), and I ordered a puzzle that will be fun to do with the grandkids, and a iPhone cover for Ric with a photo of a waterfall.

“We’d like a copy of the book,” our neighbours exclaimed when they saw it. “Where can we get one?”

“Maybe when we get home, we should look at renting a store front and producing some giftware and books featuring your work,” Ric suggested later.

I’ve had two stores in the past. I know how much work it takes. I think of my left arm, which will hardly lift a tea mug right now, and my limited energy. “Um, I don’t think so.”

And then later: “We do have room in the basement, we could order some product, store it there, and set up an Etsy account. Then all we have to do is deal with shipping, and find a company to manufacture our goods.”

“I’ll ask around,” Ric agreed.

Meanwhile, I’m editing the book.

Wildlife Refuge Take Two

The sun is shining and as we pull into the office area, a flash of bright red catches my eye – a vermilion flycatcher.  I hop out and aim my lens towards the bush where the bird has landed.  A swoop of large, mottled brown wings cuts off my view.  A kestrel settles in a higher tree.

“He likes to hang around here,” a woman emerging from the office says.  She also tells us that seven whooping cranes have been spotted on the grounds today.

Anhinga posing.

We skip over the first viewing point, as we’ve come with our friends and their two dogs, and it is not advised to take them to the alligator stops.  The heron trail offers a raised boardwalk, so we head there.  Just steps from the car, we notice two anhingas.  One flies away, but the other remains and poses.  

The boardwalk overlooks a smorgasbord of bird life – herons, egrets, and others.  Off the shore is what looks to be a white boat, but using the telescope we can see they are cranes – not close enough to photograph, but cool all the same.  A picture of three fluffy birds closer in, later reveals three juveniles, but the picture is poor quality.  

Wings carry me upward.

From here, we drive to the observation tower.  Butterflies flit about in the sun’s rays, keeping me company as I slowly make the ascent.  My body is protesting, and half way up I consider stopping, but the glimpse of a busy waterway propels me to the top.   

Pelicans, egrets, herons, ducks and white ibis forage below, and despite the fullness of the sun threatening to blind my shots, I do manage to catch this foursome skittering across the shallows.

A successful visit, ensuring we’ll be back again.


What I liked about starting a new school as a kid, was the opportunity to change my approach to life.  In the early years, I was known as a tough girl, a fighter.  I decided to leave her behind when I moved schools in 5th grade, and focus on being smart.  Instead, I learned to hate myself, so when I moved again in Grade 8, I was ripe for bullying.  That escalated, until we moved again in high school, and I had the opportunity to blend in.

“Be friendly,” I told myself, “and try not to stand out.”

I failed, of course, and in the end was asked to leave the school, but moving again afforded me another opportunity to edit myself.  I deduced that sticking to myself and not caring what others thought was the best approach.  Toughness was back, without the fist fights.

Having just moved to a new town, the conversations with myself have started up again.

“Don’t tell them about your illness,” I caution myself.  ME/CFS has defined me these past four years, and I crave another identity.

“This is our opportunity to break free of the stigma.”

“But what will I say when I’m not able to join in, or have to cancel?”

“Who says you have to say anything?  Set healthy boundaries, and just say no.”

“People will stop asking.”

It’s a circular conversation.

“Do you think we can pull it off?  Don’t you think people will notice?”

“So, be mysterious.  It’s none of their business.”

“But I’m such an open book…”

Tomorrow, we’re going to our first social event with our new community.  Hope I can stop talking to myself long enough to enjoy the outing.

(V.J.’s weekly challenge is conversation.)

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.





My living room has beautiful big picture windows facing two directions, allotting me a full view of the neighbour’s front gardens to the north, and the constant comings and goings  on the  street in front of the house.  Lying on the couch with my morning cup of tea is how I like to greet the day.

On Sunday mornings, the rush of traffic is replaced by clusters of runners, with their long, sleek bodies, puffed out reddened faces, and self-satisfied grimaces.

“My wife had CFS,”  a man once told me, “but now she runs marathons.”

It is hard for me to believe.  The distance between my own physical capabilities and these weekend athletes far exceeds any race they might run, the copper-coloured legs of my sidekick walker remind me.

Maybe wheelchair races, I chuckle to myself.

Now that my life is confined to the four tiny rooms on the main floor of our home, I have new perspective.

I cannot remember a time when I did not feel lacking in my life – not enough hours in the day, not enough help, not enough money – but the truth is, in retrospect, I always had exactly what I needed.

Today, I do not have the legs to carry me swiftly on my way, nor do I have the energy to aspire to such feats, but I do have a home that I can easily navigate, surrounded by the endless beauty of Nature, and friends and family that truly care.

Abundance, I am discovering, is an attitude, not a state of material wealth.  It comes with the recognition that life is sufficiency, not lack.

(Note:  This passage originally appeared on One Woman’s Quest in October of 2014.  The house is gone now, of course, replaced by even smaller quarters, but the message still pertains.)

RV-Able: Creating a Home

th-1Gone are the wooden window valances draped in heavy material of sage green and burnt orange.  Gone are the matching upholstered dining chairs and the butterfly table.  Gone is the small J-couch that once blocked the large picture windows on the passenger’s side of the coach.  We are renovating.

Since July 31st, we have been officially living in our motor home, Hoo Gnu.  She offers 450 square feet of space and it has taken some maneuvering to figure out where everything will fit (and culling what doesn’t) and now we are focused on making it home.

th-2While we have no regrets about downsizing (yet again), it is not without its challenges:  Ric still works from home and I continue to be home bound with ME/CFS, so creating a space that suits both our needs has been our main consideration.  A small desk from Wayfair makes a great working space for Ric, and an ottoman with built in storage has become his file system.  As the majority of my day is spent in bed, I am not underfoot, but there is comfortable seating for me in the main area as well.

We want our home to reflect to our esthetics – simple, comfortable, and welcoming.

Painting over the old, dated wallpaper has not only brightened the place up, but also help us identify areas of potential damage from water, initiating some repairs.  Hoo Gnu is ten years old, so some of this is expected.IMG_0025

Today, we are having new blinds installed, something I am positively thrilled about, the old ones being difficult to maneuver for my weak muscles.

We haven’t hit the road yet – have been parked in an RV site close to the city for six months – and already the benefits of this lifestyle are apparent:  a) we are debt free; b) there is little to no yard maintenance here; c) we have eliminated most of our clutter, and; d) the small space is more manageable for my body.

Plans are in the works to head out mid November.

Distraught? Pause

Yesterday, I was ready to give up – on everything.  I was convinced that my husband’s distraction meant he didn’t love me and that our marriage was coming to an end.  I  panicked to think that we are planning to leave home and I will be cut off from family.  I convinced myself that I am doomed to a loveless, sterile existence, and wondered what was the point of it all.

Typically verbose and sunny, I barely uttered two words – my mind was clouded with too many dark thoughts.

What triggered it?

th-1Hard to tell for sure, but yesterday’s blog post, courtesy of Dr. Nicholas Jenner served as an anchor that stopped me from blurting out things I would surely have regretted later.  His timely words reminded me of how deeply my relationship with my father still affects me.  Everything I was feeling could be linked back to childhood.

Thank goodness I had the common sense to wait for my inner churning to settle before speaking.

Initiating a confrontation when emotions and anxieties are at a climax is never a good idea.

Today, exhausted, and calmer, I am able to recognize that the problems that made me want to jump ship yesterday, are likely easily resolved with open and honest dialogue.

I recognize now that I had projected my father’s emotional absence into my husband’s distraction.  While it’s true that we pick partners with whom we can replay the wounded areas of our original child/parent relationship, it is important to separate out the realities.  My father was emotionally unavailable because he was a) a workaholic, and b) an alcoholic, and c) unable to live authentically (he identified as female although his outer body was male).  Is my husband emotionally unavailable?  At times, yes.  But neither to the extent, nor for the same reasons as my dad.  I can talk to him about it, without the backlash that might have resulted with Dad.

As a child, my need for love and reassurance was constantly squashed.  “You have no problems; you don’t need anything” were the messages I received; so much so that I would rock my sobbing self to sleep with the mantra:  “I don’t need anyone; I don’t need anything.”

As an adult, I recognize the fallacy in this type of thinking, and have worked hard at articulating and addressing my personal needs.  Relationships, I have come to understand, are about meeting each others needs.   This morning, I am able to recognize that this subject is up for discussion without the panic and childlike terror of yesterday.

th.jpgYesterday, I was read to give up – for whatever reason.  It was an emotional crisis triggered by unknown fear.

Thank goodness I had the wherewithal to wait before reacting.

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)


What Does It Take To Belong?

We roll into our new neighbourhood cautiously guided by an old-timer, who after we finally manage to maneuver into our RV site, introduces himself as Graham.

th-2“Been here since the park first opened,”  he beams and then proceeds to point to each of the other trailers and run down who’s who:  “The ones behind you like to party,” he warns, “as does the couple just over there.  These people have two little granddaughters, that’s a woman by herself, the next one just lost her husband last year, this one over here had a boyfriend but they broke up, Dean across the way helps out around here like me…” and so on.

We have landed right in the middle of a pre-established click, and I feel my insecurities rising.  We are outsiders.

The rain follows us, and trapped inside, I watch as others arrive, pull into their units and even before unlocking their own doors, hustle through the downpour to greet old friends.  Voices rise in excitement and laughter lingers in the air, and I am feeling 12-years-old again, like the year we moved half way through grade eight and my new classmates examined me as if I was some repugnant specimen that had crawled out of the gutter – an unwanted intruder.

The next morning I watch as people emerge and gather in the road way, cups of coffee in hand, and then later as trays of food are carried to a potluck that doesn’t include us.

How will we ever fit in, I wonder?  These people have a history.  They have stories and rituals and relationships that have evolved over years of coming together.  I have legs that sometimes work, a sensitive palate, and a non-alcoholic habit.  Even if we were invited, I probably wouldn’t be able to attend: I’m in bed most of the day. th-3.jpg

I resign myself to the role I’ve always played:  the loner.  They will tolerate me, and I will remain comfortably on the periphery, I decide.  Ric is just like me.  We’ll be loners together.  It’s what we do.

Then my granddaughter comes to stay, and as we walk her to the playground we pass a group of people.

“V.J. and Ric, right?”  a woman waves.  “Might as well get acquainted, we’re neighbours now.”

Names get thrown around and before we stop her, Sloane has joined the circle and made friends with another little girl.  Then another woman stops and says she lives directly across from us and we find out she’s from Ric’s hometown, and when we meet the next time, I’ve remembered that she’s the one Graham said lost her husband and I offer condolences, and we sit and she tells me her story, and it turns out her husband had the same cancer as mine, and we cry together and suddenly we’re no longer intruders… we

Turns out it’s not the beer we drink, nor whether or not I can eat pasta, nor any of the other reasons I might think someone might dislike us – it’s about making connections:  opening our hearts and seeing the people around us and letting them in.