Day 238 One Woman’s Quest

I started this blog in 2011 as a gift to myself.  I had just undergone a lumpectomy to remove abnormal cells from my right breast, and was awaiting the results.  Because of the Christmas holiday, I would not hear for five weeks.  Those were five long weeks, and a whole gamut of thoughts and emotions.

Since that time, my husband has been diagnosed with and received treatment for Stage III, Prostrate cancer, and while I escaped the ‘C’ word, I am now confined to my home with ME/CFS.

But life has not been just struggle.  At the same time as I awaited word, I found out that my middle daughter was pregnant with our second grandchild – a joy that never ends!

Nor were these the first challenges that I had faced in my life, just more in a long line, actually.

So why a quest?  What is that a woman of mature age quests for?

Let me try to answer.

I seek a sense of autonomy in my life – to be able to feel that my decisions/ needs/ wants are not overshadowed by the dictates of another, or a past that is always looming.

I want to know what it means to feel truly empowered.  To know, for once and for all, that I have laid the victim to rest and instead, embraced my authentic self.

I want to live life from a place of inner peace; a trust that no matter what life throws at me, I can continue, because I believe in myself.  And in that peace, I want to know what it feels like to live without guilt, need for permission, or a sense of unworthiness.  I want to be able to forgive (myself and others) in order to be free.

I want to be able to breath freely and stand firmly upon this sacred Earth and make a difference.  To engage with life.  To seek understanding and share passion with all people – no exclusions.

I want to live a life that at the end of my time I will want to celebrate, so that my dying words will be:  I did it!

I am not there yet.  As Robert Frost said, I have “miles to go before I sleep”, and so I quest on.

At least now you know what I am looking for, and if at some point you and I should meet in these pages, maybe you could share a little of your wisdom, and I might come closer to finding my own truth.



Adjusting to Life with ME/CFS

(Originally published October, 2014)

The news from the doctor was not so good today, or maybe it is that this news was no different from past visits, but my mind can only absorb the hard stuff in stages.

“I seem to be getting worse, not better.” I told her.

“That’s how it is often how it is with this disease,” she consoled. “Sometimes you have to hit bottom before you start climbing back up.”

th.jpgI read my growing list of concerns: sleep remains a problem; eating is often accompanied by pain and abdominal swelling; I have painful swelling in my groin; breathing continues to be difficult; and my legs are unreliable.  Headaches, heart palpitations, sweating when upright, dizziness and flu-like symptoms.  I shake if I try to do anything standing, such as chopping vegetables.  I feel like I’m not getting anywhere.

She nods with each item, recording it in her files, and occasionally asking for clarification. “All typical symptoms,” she attempts to reassure me.  “Set a timer for standing:  try seven minutes.”

“Barely time to prep food,” I mutter.

“Buy food already prepared,”  she suggests.  “And make sure you are sitting with your feet up for meals.”

“Not the table?”  Eating at the table with my husband was the one bit of normalcy I was trying to hold onto.

“Do you have a lazy boy?  Try using it for meals.”  I do not have a lazy boy upstairs.  I will have to eat in bed.

“Set a timer for phone conversations and visits; they are also exhausting.”  I have noticed.

I have been tracking my daily activities, symptoms, and energy levels.  She scans my past four weeks:  nothing but chaos when I examine it.

“I see T.V. quite a bit.”  she shakes her head.  “T.V. is too draining.  Limit it to one hour per day.  Preferably commercial-free.  I’d rather see you writing than spending time on T.V.”

“It is a lot of noise,”  I agree.

In answer to my unasked question, she continues:

“Lying flat with your eyes closed is the best.  Listening to soft music is okay, and maybe books on tape if reading is difficult.  I also think it is time you consider using a walker.  Definitely a wheelchair when you go out anywhere.”

“Will I get better?”

th-1.jpg“In a year you might see a return of energy, but not likely more than twenty-five per cent – hardly enough to consider working.  It takes time.”

The crushing in my chest when I leave is emotional.  You will have to grieve the life you have lost, I remember my therapist saying.  Today, I understand her warning.

Home again, I crawl into bed and try to breath through the heaviness that bears down on me.  Sobs release some of the oppressiveness, but I know it will linger for a while.

Healing is a shift in perspective, I always used to say.  Where is the new perspective here?

Well, I tell myself, Look at the bright side:  I won’t have to worry about wearing make up for a while, so my skin will get a break.  And I’ll have time to let my grey grow in without anyone noticing.  Think of the money I’ll save on clothes.

My twisted sense of humour always comes out at the worst of times.

If talking tires me, then maybe I’m going to learn to be a good listener.  That can’t hurt, right?

And wait!  Didn’t she say she would actually prefer it if I wrote instead of watching television!  You mean, maybe for the first time in my life, writing can become a routine and not an ocassional self-indulgence?  th-2

Could it be that in the very moment I lose my legs, I gain wings?!

Ah, life!

Day 201 “Mental Balance”

I am travelling in the South with my son and one of his friends. We stop at a roadside restaurant and after being seated and ordering drinks, realize there is nothing that I can eat, so we decide to leave. John and his friend go to get the car while I settle up with the waitress. I spend a bit too much time talking and explaining and when I emerge from the restaurant, John, friend, and car are gone. My son has grown impatient with me and moved on. I am in a state of disbelief, rage, and then deep concern for my baby.

When I wake up, I can’t shake the emotions. Usually I dream that it is Thor that abandons me, but now it is my son? Obviously the dream is about more than being abandoned by my loved ones. So what does it mean?

I think back over my day leading up to the dream. Even though my new regimen requires that I sandwich exertion between periods of rest, I decided yesterday to proceed as if I wasn’t sick. I rolled from one activity into another and ignored the growing state of dis-ease. I pushed through, without pacing myself.

I’d always thought my abandonment dreams about Thor were related to his illness and my fear of losing him. John is a steady and loyal son, and never gives me reason to fear. Clearly the dream source is trying to tell me to revisit this particular theme. Who is abandoning whom? What if the dream is telling me that a part of me is neglecting another part of me? What part of self does Thor and my son represent? What part of me is always left feeling angry and forgotten?

John is typically patient and compassionate with me. He loves me like a son loves a mother: wholeheartedly. He laughs at my foibles, and shares with me his concerns. It would be totally out of character for him to drive away and leave me stranded in some strange, isolated place. So what part of me that is typically patient and compassionate, left me out in the cold yesterday? That is easy. It was the part that makes sure I am setting boundaries and taking care of myself. That part was definitely missing in action! I even went to Costco, even though I was overextended before I left the house, and walked the store despite my immediate recognition that all systems were overtaxed by the crowds and overabundance of stimuli. Then I came home and ignored my need to retreat into restful silence and chose to socialize with my family, staying out of bed for the remainder of the evening. I was like a pouting two and a half-old-year refusing to go for a nap even though I was well past my limitations.

Another idea starts taking shape in my mind. There is something else that I have been ignoring, and “leaving behind”. It is my creative self. I spent the greater part of the weekend in Toronto visiting Ester and her family. As I usually do, I packed a notebook for writing and my ipad, and while I had several inspiring thoughts, I did not stop to jot them down. Not even on the train ride home, when I had more than ample opportunity. My mind was so ripe with creativity that I lay awake for hours last night, despite my fatigue, replaying my storylines, and still I did not venture to record it.

“I know what the abandonment dreams are about,” I tell Thor. “It is about the many ways I sabotage my writing. It is my writer self that is so disappointed, enraged, and heart-broken.”

“You have always wanted to write,” Thor agrees. “And I can’t imagine that writing takes too much energy in comparison with everything else. Wouldn’t it actually recharge you?”

I cannot argue with him. So why do I deprive myself so? Why have I been unable to commit to this innate, and eternal passion of mine?

Derek Linn suggests that in order to manifest we need mental balance: a state of harmony between the outer ego self and the inner wounded self (my words). The ego thrives on accomplishment, but the inner sense of unworthiness sabotages by pulling back. I have long recognized in myself the ability to be brave and courageous when what I stand to lose has little value, but highly resistant to put myself out there when the outcome means the world to me.

Writing, being a writer, means the world to me. To write, and be published, and acknowledged would be the ultimate life accomplishment. It feels so risky, so vulnerable, so potentially disastrous that there is no wonder I abandon it time and again; writing anonymous blogs, like taking that part of me on a trip, and then leaving it there – somewhere far away from home – where it can’t hurt me.

I love my writer self. I adore her with all the emotion of a tender spouse or loving child, but I just can’t seem to make that commitment. So I leave her behind, telling myself that one day I will give her what she needs – make her a priority.

And in the meantime, she wanders the unfamiliar corridors of my mind, alone on the dark streets of my fearful psyche, wondering what she has done to be so blatantly ostracized: abandoned and deeply pained.

Day 167 “We are one”

My first journal was a flip-the-page, week-at-a-glance calendar that my father gave me when I visited his office.  I kept it hidden under my mattress and wrote while huddled in my safe spot, between my bed and the wall.  I must have been six or seven because the sentences are very basic and I hadn’t learned cursive writing yet.  Most entries are one sentence:  Dad mad at mom.  Got an A on spelling.  Visited cousins today.

This rudimentary diary was enough to get me hooked, and then I started asking for proper ones.  Ones with little keys that I could lock, to safeguard my thoughts.

As the length of my entries grew, so too did my emotional expression.  At eight, I wrote about unfairness, and my growing anger at injustice.  Mostly, it was expressed like this:  Tommy said girls can’t play baseball.  Beat him up.  Got to play.  Leslie always gets picked first for everything.  Told the teacher that wasn’t right.  She let me go first.

The pattern that emerges through those young years is one of increasing isolation, as I discovered that I really didn’t fit in the world.  Time spent alone, and writing, increases.

At twelve, I get excused from regular English lessons to work on a novel.  Writing overtakes my life, and becomes such an intimate companion that I let go of the need for external friends.  I have stopped trying to fight my way into acceptance, and resigned myself to the fact that few people want to be friends with a nerd like me.

The summer of my fourteenth birthday, I learn that my father is a cross-dresser, and somehow I think that the world can tell by looking at me.  I start sitting at the back of the classroom, and journaling instead of taking notes.  My grades slide, but I discover the power of poetic expression.  I am a loner.

I never speak of what I have learned, but trying to process the information will be the topic of many entries for years to come.  Into adulthood, my daily writing consumes pages and pages, and I have now switched to three ring notebooks.  I have boxes of notebooks, labelled “Mom’s Crap” by my children.  I take them with me on every move: a piece of my soul not yet revealed.

It has only been in the past year and a half that I have ventured to share my writing with an audience, albeit unknown, through blogging.  Recently, I have received responses, and visited other blog sites, and to my delight, I have discovered that I am not alone.  There is a whole community of therapeutic writers like myself.  We write because we have to, because it is our passion, and our lifeline.

The internet has given us the opportunity to break through the barriers of our self-imposed isolation and helped us uncover commonality.

In the greater scheme of things, we are, after all, all one.

One Woman’s Quest

My Christmas present to myself this year (2011) is this blog.  Writing is so much more to me than just words on a page.  I have kept a journal for as long as I can remember, however; these past six years, as I have sought to redefine myself, I have let it go.  Consequently, I have experienced a sense of disconnect, like something has been missing from my life.  Lately, the restlessness has escalated and I find myself waking in the middle of the night, wondering at the source of this angst.  Last night I put pen to paper.  It was like reuniting with an old friend.  Today, armed with the gift certificate from Chapters that my son gave me for Christmas, I hit the book store.  I had in mind a particular book I wanted to buy for him. I didn’t find it.  What I did discover was a daily meditation book entitled, The Tao of Joy Every Day: 365 Days of Tao Living, by Derek Lin.  I picked it up, along with a few other books I thought other family members might enjoy.  In line, I opened The Tao of Joy and began to read.  My son may like this book, I decided, but this one is for me.  On the ride home the commitment formed itself:  with each day’s focus I can reflect and write.  The goal:  to find myself back on a spiritual path that sustains me; to regain equilibrium in my life.