I feel alone

I always hear that I am not alone, but sometimes I am alone, or at least I feel very alone.

I am feeling like that today, because I have been having to watch my father slowly disappear.  I don't know when, but sometime, in the not-too-distant future, he will no longer be with me.  And it is heartbreaking and scary.

And not only is it heartbreaking and scary but there are a lot of realities to deal with.  My mother is also old and not healthy.  My parents will not be able to live independently for much longer.  Already, I have to do a lot of caregiving.  Groceries, company, chores, e-mail, social contacts, drives, etc. I have to do most of it alone, though I have Jaime to help me.

I also have to figure out how I am going to manage their future.  Where will they live?  Who will take care of them?  I am trying to find them some alternatives, but it is difficult and frustrating, because they have rigid views.  Not a retirement home, not facing the street, not expensive, next to the stores but quiet, next to the doctor and their friends, and a bus route, and me.

I know I will have to do a lot of the caring myself, but I can't do it all by myself.  And I am an only child of immigrant parents, so I really have no one to help me.  I have Jaime, who is a great help, but he is their son-in-law, which isn't quite the same.

I feel very much alone in this.

I guess it doesn't help that my closest friend isn't talking to me right now, over a misunderstanding.  I've told her that I never meant to hurt her, that I said no that time, one time, because I put my family first - the time I had set to help my parents and a response that my son had given me.

I've tried to explain and to apologize.  Of course, I didn't do it very well, because it was over text and I was very emotional.  I am very emotional, that is who I am.  I am flawed.  But I am also someone who is a true friend, who does not intentionally hurt people, who almost never says no.

But I guess it is not enough because I am also someone who is alone.

Steel Magnolias

It is May again in Ottawa, my favourite month.  The flowering trees are in bloom and there are all shades of pink everywhere.

Five years ago, on my Mother's Day, I planted my own flowering tree.  A magnolia.  By Mother's Day, five years ago, I was almost okay.  Not completely. I still had a stent and I didn't really know what was going to happen, but the clouds seemed to be parting.

I did know that I wanted to plant a tree, a beautiful flowering tree of my own.  Brenda and I walked to the Arboretum and looked at all the magnolias to see which one I would like best, and then Jaime and I went to the nursery on Saturday.  We picked a smaller size one that we thought would fit on our front lawn.  We planted it on Mother's Day and all gathered around baby tree and took a picture.

We lovingly tended to it all summer.  Once winter came, we wrapped it warm to protect it from the snow.

I never said it out loud, but I thought that if tree grew and thrived, if it lived and survived the winter, then I would live and thrive too.  As long as the tree was all right, I would be all right.

Now, five years later, the magnolia is still standing and so am I.  

Yesterday, I went to my six month check up with Dr. Hopkins. I was getting a bit impatient with the long wait but I forgot all about it when I finally saw her.  

I wasn't expecting it but she told me it was the last time she was going to see me.  "I am no good to you anymore," she said. "I am setting you free.  I am giving you back to the care of your parents."

"People celebrate this milestone," she told me.

I burst into tears and sobbed.  Partly, I couldn't believe that I had finally hit the milestone.  Partly, the whole ordeal came back to me.  And partly, I was sad to be saying good-bye to Dr. Hopkins.  She saved my life, literally, and buoyed me with hope and optimism through the darkest time of my life.  How can I even begin to thank someone for that?  

"This is the kind of relationship you want to end," she told me.  "This is a good thing.  Most of my other good-byes are because my patients have died."

For her, I am a victory.

I always thought that the five-year mark would be some magic line.   I thought I would feel safe after five years.  But though the trauma has faded, I don't feel perfectly safe.  I don't feel safe at all.  I wish I could have the comfort and protection of Dr. Hopkins for ever.  How can I go on in my trajectory without her? 

I read a memoir recently in which the character talked about the saying, "I can't go on.  I will go on."

I still have my magnolia, and I have my family.  I still don't know what will happen.  I know now that we can never know what will happen.  

But I know it is my favourite month, and that I can get through almost anything.

I will go on.

Flowers for Malini

When I was a child, my parents would always buy flowers on June 2^nd.  They did this to mark my sister’s birthday.  She was born on June 2, 1967 and died just a few short years later.  The details of her death are fuzzy to me, because it was always so painful for my parents to talk about.  I always knew that I had had a sister, but it was not until my 16^thbirthday, I believe as a special birthday present, while we were visiting my grandparents in India, sitting on their big bed, my father told me the story of my sister.  We were both crying as he gently told me.  

 

Malini, or Mali for short, would have been a healthy baby, but was being strangled by the umbilical cord when my mother went into labour.  It was before the days of ultrasounds and today’s foetal monitoring.  They left my mother in labour for almost 48 hours.  By the time Mali was finally delivered, she had cerebral palsy from the lack of oxygen to her brain.  

 

My parents were young and alone in Canada.  They needed support to look after a child with a disability and took Mali to India to my grandparents.  My father had to return to Canada to his job in September, but my mother stayed on.  Eventually, she also returned to Canada but left Mali with her mother for a time, as is often the custom in India.

 

Somewhere in my parents’ story, I was born.  My parents did not want to worry their parents so kept my mother’s pregnancy a secret.  When I was born healthy, they sent an elated telegram to India: Healthy baby girl born, 7 pounds.  

 

When I was six months old, my mother took me to India, and I was together with my sister for six months.  How lucky was I!  I don’t remember her, of course, but I have seen pictures of me and my sister together.  Mali, the older sister, playing with her baby sister Mau.  

 

Then my mother brought me back to Canada, leaving Mali with my grandparents again.  

 

There was no telegram on December 18, but sometime later, my mother received an Aerogram letter.  She opened it eagerly for news.  My father was at work.  She was alone with me.  The letter said that Mail had died on December 18.  She had had a bad cold which turned to pneumonia, and it was simply too much for her delicate lungs and heart.  

 

I can’t imagine how my mother felt when she read that later.  She told me that she called my father at work.  She told me they got through the next few months just by looking at my face.  

 

They never told any of their friends about Mali.  They never sought help or took anti-depressants.  They never talked about it.  It wasn’t done in those days. 

 

I was too little to be aware that I had lost my sister.  I was too little to be aware of my parents’ grief.  But as I was growing, and into my adulthood, and to this day, I was aware of a hole in my life and in my family that I knew was the absence of my sister.  As a child, I talked to Mali a lot in my head.  I told myself stories that we found out it had been a mistake.  She was not dead at all.  And we would be reunited and so happy as a family of four.

 

I craved a friend who could fill the emptiness left by Mali’s death.  I craved a best friend.  Friendship can be strong, even stronger than family sometimes.  But it can also be fragile or out of reach or easily lost.  

I had a best friend named Kathy from grades 3 to 7.  She was the best friend of my dreams.  She was the perfect best friend for me, shy and sweet and good.  In grade 8, my family moved away for a year for a sabbatical, and when I returned in grade 9 everything had changed, and Kathy and I were no longer best friends.  

In my heart, when I am loneliest, I still search for Mali.  Perhaps, if she had lived, we would not even be close.  But I don't believe that.  I believe that so much could have been different if she had just lived.  

It is a cliche but I believe that she does watch over me, and has helped me through the many things that have happened in the last few years, and before.  The things that worked themselves out even when it seemed there was no way out.  

And now.  Sometimes I doubt and despair, but in the darkest of moments, I know that I am not alone, because even though Mali died, she did not leave me alone.  I know that she is there, somewhere protecting her little sister, like in those pictures of the two of us on our grandmother's balcony.

I will buy some flowers today, her birthday, June 2.  Happy Birthday, Dear Mali.   

 

 

Prairies Road Trip Adventure - Day 1

We landed in Winnipeg late last night to thunder and lightning and rough winds.  We heard that there had been a few tornadoes that had passed through.  We were glad that our plane had landed safely.

It was past 10:00 when we got to our hotel so there was not much to do but get ready for bed.  Though it is a nice hotel, the double beds are small when you share them with children who like to sleep in the middle.

This morning we found our way to the Assiniboine zoo to see the polar bear exhibit.  We saw many amazing animals, moose and bison, peacocks and owls, lions and tigers, and of course polar bears!

It was a hot day, so by the end we were tired an zooed out.  We came back to our hotel to rest.  Aveen took a nap, his first nap since he was three years old.  Then we went swimming in the hotel pool.

In the evening, we headed out to the Winnipeg Forks where the Assiniboine meets the Red River.  We ate dinner at the Old Spaghetti Factory and then walked around the Forks. 

First impressions of Winnipeg - sprawling prairie city.  Very gentle and friendly people.  Super good service.  Everyone decides we need something better and gives it to us with no extra charge. Bigger room, free juice and toast at breakfast, a replacement dinner.  Do you know how much complaining I would have to do to get that in Ottawa?

On the way back from our hotel, we saw a real arrest go down.  A guy running. Police cars.  The guy being held to the ground being arrested.  That was a bit scary.

Back at the hotel now, we are having some quiet time.

Defying Gravity

This month, I've felt like I've been defying gravity.  For about four years, I tried very hard to reach a certain level at work (an EX-01).  I really wanted it.  Why?  I guess we just all want to move up in the world.  It seems a better direction than down.  And it is hard when your bosses get younger and younger than you. 

I almost got an EX-01 at my last job.  I excelled at my job and was told that I was "almost" ready for the EX-01, and I would get there, no problem.  Next time.  Next job.  It would be mine. 

Except it wasn't.  Over and over again. I worked my hardest and did everything they told me I needed to do to get the job, but it was never good enough.  What they really wanted was for me to change who I was.  Then I realized, after a long time, that they really just wanted someone else.

My last year at that job was a disaster.  A lot of things happened, but the main thing that happened was that I was diagnosed with cancer, and I was really never able to get back "into" work at that job.  I left it to go to my current job. But that proved to be a long hard road too. 

A month ago, something good happened.  My Director asked me to take on an acting EX-01 for my supervisor who is on maternity leave.  I've been doing this for a month, and I've felt like I've been defying gravity (just like the song). Things have been pulling me down constantly since my cancer diagnosis, and having this happen to me is like defying the general downward pulling force. 

I am loving the job so far. Its not just the level.  I have a lot of interesting issues and individuals to interact with, and I am trusted with a lot of responsibility.  And I feel fully engaged, and I feel that my boss (in addition to being older than me) trusts me and likes me the way I am.  And that has made a huge difference to how I feel about things, including myself.

I can't say how much it has meant to me to have something good happen to me.  Because it has felt like, in the last two years, my "good" is the absence of bad.  I have to be grateful for every clear medical test.  Of every cancer-free day.  And I am grateful.  For every minute of it.  And I don't ever forget it.

But some days, it isn't enough.  I need some lucky breaks too.  I need good things to happen.  When I was going through the cancer ordeal, I wondered how I could ever have been anything less than ecstatic with my life when I didn't have cancer.  I vowed to be happy with my life just the way it was if I could just be okay.  

Yet, I haven't been able to do that.  A surprisingly high number of crappy things have happened that are completely unrelated to cancer, and it turns out that those things make me unhappy too.

I have also done an amazingly high number of truly wonderful things too.  I've seen my young children get older and develop into lovely older children and kind people.  I've travelled to amazing places with my family (and a few awesome weekends with friends), I've learned to dance (and loved it!) - just to name a few.

So I'm not saying that there haven't been many special things.  But I guess I just felt like the universe might throw a bit of good luck my way (and not just the absence of bad luck), and it surprised me when that didn't particularly happen and there were still crappy things to deal with.  I know that is life.  We are never "entitled" to anything.  The most worthwhile things come to us only when we work for them.

So, on the one hand, I feel that my current job situation is good luck.  On the other hand, I have worked really hard for it for many years.  The lucky part is that all the stars just lined up in my favour this time, and my Director liked me and decided to take a chance on me.

It is temporary.  Soon enough, I will be back to being bossed around by someone much younger than me.  But I am living in the present and enjoying this moment.  When it is over, maybe there will be some other good luck, not because I'm entitled to it, but because I have earned it.   

I

 

A Matter of Trust

In the last two years, I have had learn to trust.  Not something that comes easily to me, I have learned.

I have never been one to dive in, head first.  No, I’m more one for reading the signs, consulting, testing the waters with my toes, and then slowly lowering myself in, close to the sides so that I can grab on to something quickly if needed.

I’ve had to learn to let go and just swim, sometimes in dark, deep waters, with the sharks, trusting that it will all be okay.  I’ve had to learn to trust.  To have faith.

My ultrasound report came back all clear this week.  Great news!  What I had been waiting for.  And it is great news.  Except, my doctor said it wasn’t the most conclusive test.  To completely rule out a new cancer, which could be an underlying cause for a lab test result, I would have to undergo a more invasive procedure.  So, the question was, do I undergo that test.

My doctor wasn’t sure.  He said that if I were a 65 year old smoker, he would definitely make me do the test.  If I were a 25 year old, he would definitely say I don’t need it. So where do I fit?  I’m kind of in the middle.  I would have thought my history of cancer pushed me to the 65 year old, but he said that didn’t put me at a higher risk for this type of cancer.  Then he realized that I have actually had the other procedure two years ago (to investigate my surgical complications) and even though two years ago seems a long time ago to me, he said it is recent enough that I don’t have to redo that test.

So, he doesn’t know for sure, but he is doing a risk assessment.  I prefer no risk.  However, he reminded me that there are no “no risk” options.  There is always a risk in a procedure, though it may be small.  I guess it is reassuring that he feels that the risk of my actually having that other thing wrong with me is even smaller.

So I have to learn to trust his judgement, and it is hard for me, but I have to do just that.

My husband would say it is a matter of having faith.  He says that he believes certain things even though he may not have the supportive, scientific facts at his fingertips, which is what I would like to have.  “But how can you believe something without evidence?” I ask.  “It is simple, he tells me.  The alternative is intolerable.”

I’ve learned that he is right.  Not trusting, not believing, not having faith is an impossibly difficult and cold way to live.

My future sister-in-law recently told me that she is an atheist.  Twenty years ago, I would have found that to be a reasonable position.  And I don’t want to judge, but I wish I could tell her that life will be very difficult without something to believe in.  It doesn’t have to be God, but everyone needs something.

And where is the evidence that there is no God?

Me, I believe in Deius Ex Machina.  A concept that my high school English teacher explained to us.  God as Machine.  It occurs when you are backed into a corner, and it is not humanly possible to get out of the situation.  In books and movies, the plotline seems to magically get resolved.  Well, I don’t think this is possible only in fiction.   It has happened to me.  Just when I think there is no way out, a hand reaches in and gets me out.  I believe it is the Hand of God.

I still prefer to have scientific facts on hand.  But I believe there is something more.  Sometimes, I have a hard time remembering that.  It is sometimes a real struggle and may always be.  I may never have faith the way that Jaime does.  But I have come a long way, and I have learned to have faith and trust.  Even to trust my doctor.

I asked for a repeat lab test, though, just to have some more evidence.  

 

 

 

 

It's raining again

It’s Monday, and it’s raining today.  Not a warm, spring rain.  It’s cold again, and it’s windy.

The weather suits how I am feeling today.  Tired, and with a feeling of nervousness and dread in the pit of my stomach.  It’s because I have an ultrasound coming up this week.  My doctor ordered it as a result of some abnormal lab results as well as symptoms I mentioned. 

I have been through this before.  In the last two years, I have had 5 scans, 5 ultrasounds, one major surgery, and 4 other procedures.  Only a few of them were disastrous, but that has been enough to make me literally sick when anything to do with the medical system comes up.  When I am scheduled for a test, I can’t sleep, I can’t eat, I can’t concentrate, I can’t enjoy my family or friends or a sunny day, I can’t even watch T.V. or read a book.  My body clenches up and won’t relax until I know the result.

I try to breathe and meditate.  I try to concentrate on my singing bowl.  I try to reflect on the words of Sri Chinmoy.  This helps a little bit.

I am worried about Wednesday’s tests because of the abnormal lab results.  It is still possible that it could be nothing.  It is also possible that it could be cancer.  The same one or another one.  My specialist was not overly concerned that it was the same one, but she said that my family doctor should do a “work-up”.  At first I was reassured, but then I realized that all she was saying was that this is not her area of responsibility and referring me back to my family doctor.  The medical field is as big a bureaucracy as anything else.

It could be things in between.

I don’t what it is, and I am trying not to worry.  My family and friends don’t want me to worry.  My parents worry more when I worry.  But not worrying at moments like this is a skill that I have not yet mastered through this whole ordeal.  How does one not worry in theses situations?  Who doesn’t worry?   I want some names.

I try not to show my worry 90 percent of the time – at work, in front of my kids and parents, in social situations.  It comes out at night when I am briefly alone with Jaime or when I am in bed, unable to sleep.  I am letting it come out here, because this is one of the reasons for my blog.

I prepare for impending disaster.  I abandon my multi-grain bread and almond butter in favour of soft white bread and butter that will go down easier.  I make a strategic plan for taking Ativan.  Do I need it most now or after the test, when I am waiting for a phone call, that could come at any time, with the result?  Do I take an Ativan before the test or do I try to keep my head clear and alert to read the possible signs that the technician may give me?  I don’t think I can do that.  An ultrasound was one of my most traumatic moments.  The one which was looking more closely at what was thought to be a fibroid and then wasn’t.  The technician kept looking and looking and pushing down.  She changed me to another machine.  Then she called a doctor in to have a look.  The doctor looked, nodded at her, but did not say anything to me or even meet my eyes.  He left wordlessly.  I blurted out to the technician, “Is it cancer?  Please tell me what you are seeing.  I am getting so scared.”  She didn’t know how to respond, mumbling something about how we can’t know for sure through imaging.  But I knew that they thought it might be cancer.  I was shaking when I came out of the room.

I’ve had good tests too since then, but it hasn’t all been clear and smooth sailing since either.  So I don’t know what to expect.  My emergency preparedness instincts kick in.  I prepare for the worst. 

I try to let myself hope for the best.

Easter. Road trip. Family. Friends. Secrets

On Easter weekend, I packed up my family and took them on a road trip to Toronto.  Normally, I wouldn’t have thought about going away at Easter since it is a weekend with expectations to eat dinner with parents and design Easter egg hunts and other activities for children.  However, friends invited us to go along with them, and I try to live my life now seizing opportunities when they appear.  It was an opportunity to go on a road trip and spend time with our good friends.

Since we were going in the Toronto-direction, I decided to add on to the trip to give it a special family significance.  Of course, we would visit Jaime’s brother in Toronto who had just gotten engaged.  Congratulate him in person.  But I also thought it would be an opportunity to introduce my kids to the only relatives they have in the country – one of the only few in the whole continent – a distant great aunt and uncle and a third cousin to my children.

We had discovered these relatives in Toronto when I was about twelve years old living in Sydney.  My parents’ friends were all doctors and they mentioned one day that a young locum with the same surname as ours had come to work in the hospital for a few weeks.  My parents figured out that this young locum happened to be the son of my father’s first cousin in Toronto.  We invited T to dinner several times while he was doing his locum in Sydney and got to know him.  That summer, my family did a road trip from Sydney to Toronto to visit T’s parents, my aunt and uncle.  They took us to their cottage (perhaps that is where my love of cottages began) and to Niagara Falls.  It is one of my happiest memories.

About 15 years ago, my parents moved to the Toronto area, where they lived for a few years.  I would visit them from Ottawa and we would get together with my aunt and uncle and my cousin T and his family.  When my parents moved to Ottawa, they kept in touch with my aunt and uncle, and there were a couple of visits, but I hadn’t seen them in about ten years.

So, when my friends asked if we would like to go to Ottawa, I thought it would be the perfect opportunity to go and see my relatives.  I deferred to my parents to make the initial calls, but there seemed to be a lot of reluctance on the part of my relatives to see us. I was finally given T’s wife (K)’s phone number and called her.  She was warm and friendly and confessed that she and T had been separated since last September.  The problem was that my aunt and uncle were terribly upset and wanting to keep it a secret from everyone, including my parents.   

I felt bad about unravelling this family secret – though I later learned that this was just the tip of the iceberg – but I understood.  Indian parents keep secrets.  My parents keep secrets too.  I am sure they hadn’t mentioned to my aunt and uncle about my cancer.  And, there wasn’t any way out of it at that point.  I said we would visit K and her daughter and their new puppies at the very least.  If she could persuade T to come by, so much the better.  We would also go visit my aunt and uncle separately.

On Good Friday, we set off, stopping at Port Hope where K and her daughter I live, en route to Toronto.  T came too, and we all had a lovely visit.  They served up tea and banana bread.  T impressed Aveen with his soccer knowledge, and Aveen and Amrita were both enraptured with the two golden retriever puppies.  The visit flew by and Aveen asked why we had never come to see them before.  “I don’t know,” I honestly said. 

The next stop was the big city.  We met up with our friends, and had a wonderful weekend in Toronto – eating two fabulous dinners together, visiting the amazing new Ripley’s Aquarium, climbing up the CN Tower, and then having Jaime’s brother give us a personalized tour of the ROM (where he is a tour guide).  Before leaving Toronto, we had lunch with Jaime’s brother and his fiancée and found out all about their wedding plans. 

On our way back, we visited my aunt and uncle.  My aunt cried when she saw us.  She had prepared a huge meal though we had agreed on only tea.  We managed only a few bites since we had already had lunch and had eaten so much throughout the weekend.  Aveen and Amrita thought it was hilarious that my aunt is exactly like my mother and my uncle is exactly like my father (even though it is my aunt and father who are the ones who are related).  My aunt cried again as we left.

Back in Ottawa, I e-mailed K to thank her for arranging the visit.  In reply, she sent me a long e-mail, explaining in detail the cause of her separation from T.  It wasn’t what I would have expected – a couple growing apart from each other over the years.  No, it was much more dramatic and sad, involving their daughter and terrible things that can happen how those things tear apart a family.

There was something pulling me to visit my relatives in Toronto.  I wanted something.  I wanted to give my kids a bigger family.  In the back of my head, I feel that if anything should happen to me, I want Aveen and Amrita to have as big a support network of family and friends possible.  However, I learned that there may have been another reason that I needed to visit.  It is I who may be able to give some help and support to this family.  It is they who need a big support network right now.

Or maybe it is that we both need each other.  We all have our secrets.  We all have our sadness.  We can support and lean on each other, if only we will talk to each other.        

 

 

 

 

It's time to begin

A couple of friends took me to lunch the other day and said that I had sounded so down in my last posts that they were worried about me.

I felt a bit bad, because I hadn't meant to sound down, and then I wondered if I have been, and why.

Well, I guess there is the usual.  It has been a long, brutal winter for everyone, and I have had lots of colds, and so has my family.  Work has been uninspiring.  I have been on my usual "cancer watch", which is exhausting.  While I look forward to spring, in the back of my head, I am worried about redoing my mammogram, which I will have to do, for fear that it will lead to another biopsy.  I have other upcoming appointments too, and possibly tests. In a way, I hope to have some tests, otherwise I don't feel reassured about my health.

I think something that has been making me a bit sad is a problem with a friend, and it has been filling my heart with anguish.

A bright part of my winter was a weekend trip to Montebello with my family and our great friends, where our activities and food and our long conversations warmed us up.  And helping Amrita play the piano.  She is practicing for the her grade 1 exam as well as a duet she will be playing at the Kiwanis Festival.  Her teacher is great but intense and it has meant a lot of work for Amrita and her home coach (me!).  It is forcing me to rediscover playing the piano, and just like my dance class, it forces my brain to focus in a creative way and helps me to be in the present. 

Also, I think I have taken two potential positive steps this winter.

The first is agreeing to participate in the psychological, clinical study at the hospital. I went for an interview and I am eligible to participate.  I am not sure when it will begin - sometime in the spring or fall, if they can get enough participants.  It is going to be a bit of a pain - I will have to take 2 hours off from work every week (at a time when our sick leave is being trimmed back to virtually nothing) and I will have to take a taxi back and forth to the hospital.  The taxi will make me nauseaus, and the 7th floor of the General isn't my favourite place in the world.  But I am hoping that the interventions they are testing may help me a little to manage my fear of cancer recurrence.  And what I am hoping even more is that I will meet someone - someone who feels like I do.  Someone I can talk to.  Someone I can be friends with.  

The second is that I think that, after several false starts, I have succeeded in starting on my novel.  For all my life, all I have ever known is that I wanted to be a writer, and I wanted to write a novel.  I wrote and wrote so many things, but never my novel.  And it is time to begin.  I found an article about writing by Annie Dilliard, from her book The Writing Life, and it filled me with inspiration.  She said to write like you are dying.  I can do that.  And she said to write something that someone who is dying would want to read if that is the last thing they could read.  I don't have any grand subjects to write about.  The novel I have in my heart is all about love and loss and redemption.  It may not be what everyone who is dying would want to read, but it will have to be something that I would want to read, and it is up to me to write it. 

S, it is time for me to begin.  To begin another part of my life's work, and to hope that the spring will come.

P.S.  Thank you to my friends who reached out and made me leave my desk to have lunch!  I think it pushed me to examine of things and to start writing!  Grateful. 

A Little Help Is On Its Way

Yesterday, my psychologist called me. We hadn't talked in many months. Despite initially thinking that I had an anxiety order, she seems to now think my reactions to things are normal - just that there are some challenging things to react to. It was nice to hear her kind voice.

She asked me if I would be interested in participating in research - a study on the fear of recurrence and other common feelings - like anger, depression, anxiety, sadness - in cancer patients/survivors.

I said I am interested in learning more. I think it involves group work once a week during work. I am not sure that will be possible to square with work. But for now, while I wait for a call from the researcher, it is in the realm of possibility. It is help sent in my direction from the universe.

Don't Google It

It's the middle of the afternoon.  You are done all your work.  All your important work anyway.  You are waiting for decisions, and there is not much progress you can make until you get them.  You've made some headway on your correspondence, but correspondence can be mind-numbing at best, if not soul squashing.  You have nobody to talk to - because everyone around is busy and deadly quiet.  You've already read the Globe and Mail. 

Something triggers you.

What's a girl to do?

I know I shouldn't. I usually don't. But sometimes I just can't help it and I google the kind of cancer I had. A cancer mentor had warned me against it. The Internet is not your friend, she had said firmly.

I know, but sometimes, the Internet is the only friend I have. 

I feel that I need to know more about my cancer. I feel like Dr. H kept it very high level - on a need to know basis, thinking I didn't need to know very much. I know I shouldn't know too much.

Nonetheless, sometimes my fingers have a will of their own.

And what I read scares the hell out of me! I see that my diagnosis is so rare that there is very little information about it.  The few academic papers warn against accepting it at face value.

I can't even write the other things they say about it. 

I feel like I am watching a scary movie by myself but just can't make myself stop.

Someone finally talks to me and I snap out of it.

Walking home, I know that Dr. H didn't just take it at face value.  She either removed or biopsied every possible organ and lymph node that she could.

But she can't give me what I want, which is certainty.  I know that there is no certainty, so I just have to make every moment count.

Sometimes it is a lot of pressure to try to make every moment count - especially when so much is not in my control.  I can only control how I respond.  I can only control how I am.

But a little encouragement from the universe for me and my family and friends would, of course, help!

Desiderata

I came across the poem Desiderata by Max Ehrmann this week.  I took comfort in reading it, feeling that I could relate to each line, and it encouraged me to be brave.  

Because I was feeling kinda blue this week, tearing myself up over issues both big and small, both existential and mundane.

Will the cancer come back?  When will it come back?  What is my body trying to tell me now?  How much time do I have left with my children?  With my parents?  Why do we always have to do the crappy shift in the carpool?  Why wasn’t I included?  I am going to be (5 minutes) late for work.  What did it mean that Aveen and I almost got run over by a car, separately, at opposite ends of centretown, at the exact same moment?

It’s been a week of minor illnesses, big drudgeries, little disappointments, and hurts.

And it always takes me back to my fears.  Despite the lovely Winter Solstice yoga class where I wrote, on a piece of paper, what I wanted to let go of in 2015 and watched “fear” go up in flames.  Where I lit a candle, so that I could see in the darkness.  Where a stranger hugged me.  

But it isn’t so easy as that.  

This week, I found myself back in the darkness.  

The poem made me see that, most of the time, my fears are indeed born of fatigue and loneliness.  I am often fatigued because of chronic sleeping problems, exacerbated by many things, big and small.  And this week, I was lonely.  I felt left out and alone.  I felt Ottawa to be a cold and lonely place.  I was longing for warmth, both in the weather and in humanity.  I wanted a proverbial hug.  

Today.  Well, it is warmer today.  I feel a bit less lonely.  And I am a bit less afraid, though I know it will get cold again.

But whatever happens, no doubt, the universe will unfold as it should.    

Desiderata - Words for Life

by Max Ehrmann

Go placidly amid the noise and haste,
and remember what peace there may be in silence.
As far as possible without surrender
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even the dull and the ignorant;
they too have their story.

Avoid loud and aggressive persons,
they are vexations to the spirit.
If you compare yourself with others,
you may become vain and bitter;
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.

Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs;
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals;
and everywhere life is full of heroism.

Be yourself.
Especially, do not feign affection.
Neither be cynical about love;
for in the face of all aridity and disenchantment
it is as perennial as the grass.

Take kindly the counsel of the years, 

gracefully surrendering the things of youth. 

Nurture strength of spirit to shield you in sudden misfortune.

But do not distress yourself with dark imaginings. 

Many fears are born of fatigue and loneliness. 

Beyond a wholesome discipline, be gentle with yourself. 

You are a child of the universe, 

no less than the trees and the stars; 

you have a right to be here. 

And whether or not it is clear to you, 

no doubt the universe is unfolding as it should. 

Therefore be at peace with God, 

whatever you conceive Him to be, 

and whatever your labors and aspirations, 

in the noisy confusion of life keep peace with your soul. 

With all its sham, drudgery, and broken dreams, 

it is still a beautiful world. 

Be cheerful. 

Strive to be happy.

This is why I love to dance

At the dance studio where my daughter and I both take dance classes, there is a contest going on.  “Write, in at least two paragraphs, about why you love to dance.”  If you win,  your story will be featured on the website and your dance profile will be displayed in the studio.”  Well, for reasons that will become obvious, I am not going to enter the contest.  (I don’t really think my daughter or her friends need to see my dance story.)  But, if I could enter the contest, this is what I would write:

 

I started to dance about a year ago.  On a cold January night when Amrita wouldn’t eat her dinner.  Spaghetti with meat sauce.  How can there possibly be a more child-friendly meal?  This is a regular occurrence at our house, but, for some reason, that night, it made me feel frustrated.  Probably, there were other things contributing to the way I felt than just the dinner incident, but I don’t remember what anymore.

 

I wanted to go out for a bit, but once I stepped outside, I realized I had no where to go.  It was a Wednesday night in Ottawa.  Bitter cold January.  Everything near-by was closed and I had no car.  And we don’t have a culture of dropping in on friends or neighbours.  

 

I walked to the community centre at the end of my block, a second home for my kids, and went inside for warmth.  It was almost 7:00.  I looked at the board to see what was going on that night.  I saw that there was a beginner hip hop class starting at 7:00.  Since it was early January, it was the first class of the session.  I had to make a choice, either go to that class and see where it would take me, or go back home and remain in a grumpy mood.

 

I hadn’t danced since ballet and tap lessons with Doris MacDonald in elementary school.  And I had hated it.  “Point your toes, Monsumi,” the crotchety old Doris would always say to me.  I would be in tears by the end of class.  

 

Nonetheless, I was under the influence of Glee with all the singing and dancing.  I kind of wanted to do that.  Hesitantly, I chose to try the hip hop class.  I went to the front desk to buy one drop-in class, and went upstairs to the studio.  There I met Emilie.  A young woman full of contagious energy and enthusiasm about dance.  She wasn’t phased that I didn’t have the proper shoes or clothes.  She was just delighted that I had come.  

 

It was a full class and I knew no one.  We started with the warm up.  I somehow was able to keep up and follow Emilie, because the warm up seemed to be aerobics steps set to hip hoppy music.  And then yoga set to hip hoppy music!  Since I have done some aerobics and lots of yoga, it seemed pretty good so far.  

 

But then we went on to the next part of the class.  She got us to choose partners and I had a moment of panic because I didn’t know anyone and I was taken back to the stress of having to choose partners in school.  However, it didn’t seem to matter that I didn’t know anyone.  Someone caught my eye and we became partners.  We had to practice body waves.  This is what I find hardest about hip hop.  I still can’t do body waves!

 

Then we went on to learning the first steps to an actual dance.  Okay, this was getting a bit trickier.  All kinds of moves that didn’t feel natural to me.  Knee pops and chest pops.  Waves and rotations of isolated body parts.  No cutesy twirls.  No smiles or wispy looks.  There is an « attidude » that you have to have to do hip hop.  Hip hop is street dance, Emilie explained.  You gotta look tough.  You gotta be tough.  It wasn’t exactly Glee.  And it was one thing to learn and follow the moves.  It was another to dance to them with the music which was always fast.  

 

A the end of the class, Emilie asked me if I was going to come back.  “I don’t know, “ I said honestly.  “I had fun, though.”  And I was really tired.  

 

I felt a huge high when I went home.  And though the class had been really hard, I went back the next week, and the week after that.  I signed up for the full session.  The class got harder.  Because at every class, we would learn new steps to add on and it was hard to remember the sequence.  You had to have concentration.  

 

Many times in the last year, I lacked concentration.  When a symptom triggered anxiety in me.  When I had an upcoming doctor’s appointment or test.  The whole month of May, when I was going through my biopsy, is a blur to me.

 

There were times when it would have been easier not to go.  Cold nights when I just wanted to bundle up at home or wasn’t feeling well.  When I should have been helping my kids with their homework or should have been prioritizing my kids’ activities.  When I should have gone to see my parents or finished my work or made a better dinner or cleaned the house.  

 

But I kept going back.  Over and over again.  Every time I went, Emilie cheered and clapped just because I had come.  And in time, I started to get a hang of the steps.  I started to get to know my classmates.  I still didn’t remember very much of the sequences.  But then I started to practice, and that helped me to remember.  

 

My teacher looked at me this week and said, “I get very emotional at performances.  I see students who didn’t know their right from their left when they first came to me.  And now they can do whole routines!”

 

Now, a year later, this is one of my favourite hours of the week.  When I am in my class, I forget about cancer.  I simply have fun.  I focus.  I live in the moment.  

 

And this is why I love to dance.  

 

 

 

 

Raise Your Hopeful Voice You Have a Choice

It started like any other Wednesday.  I walked Amrita to the community centre for Breakfast Club, and I hugged her and said, “Have an awesome birthday!” We both giggled because I had meant “Have an awesome day, not birthday, but her approaching birthday and party were on my mind.

 Later in my office, I wondered why I didn’t hear the sirens.  My window faces Elgin Street.  I would have been able to see the War Memorial had I been a couple of floors higher up in our new building.  I guess I was engrossed in something.  Around 10:00, I heard a couple of our managers coming around to all the offices telling people not to leave the building.  My manager looked at me and understood that I had heard her speak to the others, though she did not say anything to me.  A few minutes later, my Director came to my office to look out the window.  I asked him what had happened.  “A soldier has been killed,” he said.  I was grateful for his presence in my office for a few minutes.

I went to the Globe and Mail site.  Breaking news.  A gunman had shot a soldier at the War Memorial and was tearing through Parliament.

What?

I stepped into the hall, hoping to make human contact, to make sense of what was happening and what we were to do.  People were scurrying but not gathering.  I called Jaime.  He hadn’t heard anything.  Hearing nervousness in my voice, he said, “You’re okay.”

An e-mail soon came, instructing us not to leave the building.  We were on lock-down.

Should I call my parents, I wondered.  They might hear the news and worry.  I decided to call them.  They, of course, had heard the news.  I told them we were on lockdown.  I told them not to leave their building in the Market either.  For some reason, I wasn’t convinced that they wouldn’t step out.  They didn’t say, “OF COURSE NOT!”

Then I remembered that Aveen was allowed “off property” from his centretown school, so I called the school, and made them reassure me that they would not be allowed off property today.  “We’re dealing with a very serious situation today,” they said, a bit grumpily.  “Yes, that’s why I’m calling,” I said.

I tried to work a bit but I couldn't concentrate.  I felt disconcerted.  I tried to chat with people, but others seemed to be working.  Only later would I find out that everyone was feeling the same way I was.

Although I knew Amrita would be safe in her school, I decided to call anyway.  I think I just wanted to be with my family.  After a couple of tries, I got through, and the office assured me that they were fine and in secure school mode.  Hearing the warm voice of Amrita's school made me feel better.

I got an e-mail from my friend asking if I was in lock down. She was too. We started e-mailing back and forth.

I started to hear people saying that we should stay away from windows.  Then we got an e-mail instructing us to stay away from them.  Right.  That made sense, but where would I go and what would I do? We had laptops but I had not been able to connect online with mine.  Nonetheless, I took my iPhone and my laptop and went to a boardroom.  I expected all my other colleagues who also had window offices to join me, but I remained there, alone and cold, the whole day. 

We had no food.  It would have been a good day to bring my lunch.  But I wasn't hungry.  I was feeling stressed.  I was worried about my children.  What were they doing?  Were they scared?  Stressed?  What would happen at the end of the day?  I was also scared that the gunman would come into our building. 9/11 was on all our minds.  It was in the realm of the possible. 

I didn't dwell on it, though.  I was anxious, but I was conscious of the fact that it was a different anxiety than what I felt at the depth of my illness and ever since.  I was able to acknowledge that we would most likely all be okay.  And even though I was alone in the boardroom for most of the time, I knew I wasn't alone.  We were all in the same boat.  (In the same building.)  With cancer, I feel alone.  

Still, I wondered what would happen.  How this would end.  It wasn't until later that my thoughts turned to Corporal Nathan Cirillo, the soldier who had been gunned down at the War Memorial.  That would come later.

A lot of friends e-mailed and texted to ask if I was okay.  I passed most of the day e-mailing and texting, even though at some point we were instructed not to.  Communication seemed important, and I had not much else to keep my mind occupied, since it was not possible to work with the tools I had available in the boardroom.  Sometimes, people in the office came together and talked, but not very much.  

Mostly, I wondered who would pick up my kids if Jaime and I were still in lockdown and they were released.  The schools had no answer.  Then, my friend, whose kids and mine are the best of friends, texted me that she was working from home that day, and would pick up the kids if they were released.  Relief flooded through me.  An angel. 

Eventually, the kids were released and my friend picked everyone up and took them to her house.  They were safe!  But I still wondered how long I would be in the building. Aveen texted me, "Are you still in lockdown?"  I think he was worried.

At some point, I wasn't scared anymore.  I just really wanted to get out of there.  At 4:30, we were suddenly told that we could leave, using the south side entrance only.  We were all happy, but at the same time, scared to leave.  Was it safe?  After all, what had suddenly changed that made it safe now?  

We decided to leave in pairs, using what we knew from kindergarten, the buddy system.  It made us feel better. It seemed a grand ceremony to leave the building, gathering our things, making sure everyone was paired up.  We squinted when we finally reached the outdoors.  It had been a nice day!  Sunny for  a change.  It felt strange to be outside, almost surreal.  Everyone was regarding each other suspiciously.

I met Jaime along the way and we picked up the kids and walked home together, happily reunited, chatting away about the day.  We made a good dinner, and stayed inside, huddled together, squished together in bed, not wanting to separate.  I let them stay up later than usual, feeling certain that we wouldn't be going back to work the next day.

But early in the morning, we got the message that it was business as usual.  What?  How could it be business as usual?  How could we go back there to the building next to the War Memorial after we had been locked in there for so long?  I was still scared something would happen again.  It wasn't clear if there had been more than one gunman.  At the very least, I needed a little break from the building. 

But we are professionals (another phrase I hate).  I reluctantly let my kids go for the day and I hauled myself back to work.  Back to duty.  Hardly an acknowledgement of what had happened the day before.

The following day, one of the managers at work arranged a discussion session so that we could talk about what had happened.  A small group of us went and we talked and shared our thoughts and feelings.  We were not alone.  We went home for the weekend, feeling better having talked and connected. 

That weekend, Jaime and I had tickets to see Once, a beautiful Irish story about love and music, at the NAC. It was a wonderful performance.  At the end, the actors talked about the shooting, and dedicated the performance to Corporal Nathan Cirillo.  They said that they would be taking up a donation to set up a trust for the Corporal's young son.

In the crowds, as we were leaving, I spotted the main actor.  I had only seen him and the other actors from a distance, their faces fuzzy.  Up close, I saw how handsome he was.  I dropped some money into his box.  Jaime said, in a clear and commanding voice, "Excellent performance."   The actor's face turned and found Jaime, like a moth turns to the sun.  He beamed with appreciation, as though he had never heard such a compliment before.  "Thank you, Sir."  I wish his attention had been to me.

I walked out of the NAC feeling good.  The words of the powerful main song in the performance stayed with me long afterwards.

Raise your hopeful voice.  You have a choice.

Falling Slowly

by Glen Hansard and Marketa Irglova

I don't know you, but I want you
All the more for that
Words fall through me and always fool me
And I can't react

And games that never amount
To more than they're meant
Will play themselves out

Take this sinking boat and point it home
We've still got time
Raise your hopeful voice you have a choice
You've made it now

Falling slowly, eyes that know me
And I can't go back
The moods that take me and erase me
And I'm painted black

Well, you have suffered enough
And warred with yourself
It's time that you won

Take this sinking boat and point it home
We've still got time
Raise your hopeful voice, you have a choice
You've made it now

Falling slowly sing your melody
I'll sing it loud

Stillness

In the last couple of years, I have been in search of stillness.  Stillness of my mind.  I have been searching for it for many reasons – so that I may have peace of mind, so that I may sleep soundly through the night, so that I may understand.

 

I have been getting better at it.  Finding ways to still my mind, though I have a long way to go.

 

In the very early days, I could still my mind by focusing on the sweet sound of the singing bowl that Jaime gave me and its vibration.  It is difficult to quiet the mind from the noise and the chatter of daily life and anxieties.  It is hard to meditate.  But to have a sound to concentrate on helps enormously.  I played the singing bowl often in those early days to calm and sooth myself.  I let myself believe that the sound would heal me, cure me, protect me.  When I felt most alone, I went to the singing bowl.  When I felt most scared, I turned to it.  I even slept with it sometimes.  

 

I still believe in its magical properties.  I go to it for peace and balm, still.  To still my mind.

 

Other things also still my mind.  Nature is a wonderful way to do this.  That is why my fall walk in the Gatineaus is so treasured.  I treasured it even before all this happened.  I didn’t quite know why it was so important, but I listened and did it.  Now it is almost sacred to me.  Hearing the rustle of leaves beneath our feet.  Breathing the crisp, fresh air.  Taking in the burst of fall colour. All this, within minutes of my home.  

 

Swimming in a lake is also my temple.  Being immersed in tranquil waters cannot but still one’s mind.  Reset the body.  If not a lake, an outdoor pool will do.  This summer, I discovered swimming on my back.  With the perfect view of the sky.  And my hearing muffled by the water to block out the noise and clutter of the world.

 

Motion also stills the mind.  I turn to yoga, which is all about stilling the mind.  And even my dance class is a different kind of stillness as my mind focuses on learning the moves and their sequence and does not wander to other things.  And I am filled with endorphins leaving the class.

 

Gardening stills my mind.  I am an amateur.  But feeling the soil in my bare hands makes me feel close to the earth.

 

There are other ways to still the mind in an ordinary day, being lost in honest work, caring for your children, cooking a wholesome meal, reading a book.  

 

Nonetheless, I struggle with achieving stillness.  I have trouble sleeping.  I am still anxious.  I sometimes don’t understand.  There are many things that make me waver.  Any kind of conflict or misunderstanding throws me off my kilter and makes me unhappy.  Worry about my family, especially my parents.  Different symptoms in my body, sometimes fleeting, sometimes lasting.  The screens that surround me all day – my two computer screens at work plus the little screen of my iPhone that demands attention, leaving us just a little bereft.

 

I try to go back to the basics.  Eat, pray, love.  Still my mind.  Open my heart.  Try again tomorrow.      

 

 

 

 

The Thing About Luck

In Paris, I started to read a book to Aveen and Amrita – The Thing About Luck by Cynthia Kadohata.  The book is about a 12 year old Asian American girl named Summer who comes from a harvesting family.  Every summer, the family goes to work at wheat fields to harvest the crop.  Summer’s job is to assist her grandmother cook meals for the harvesters.  

 

The book is set during one particular summer when Summer’s family just isn’t having any “Kouun” (good luck in Japanese).  Her parents have gone to Japan to take caring of ailing relatives, her grandmother has unexplained and excrutiating back pain, Summer had contracted (but has recovered from) a fluke case of malaria from being bitten by a rogue mosquito in Florida, and her brother’s best friend moved away, leaving him alone and, furthermore, somehow “invisible” (even his cousins seemed to just not see him).     

 

When I started to read the book to them, Aveen and Amrita found it hilarious.  They roared with laughter with each sentence.  

 

“We got seven flat tires in six weeks.”  Gales of laughter.

 

“I got malaria, one of 1500 cases in the United Sates that year.” Gales of laughter.

 

“Random bad smells emanated from we knew not where.”  Gales of laughter.

 

“And my brother Jaz became cursed with invisibility.  No one noticed him but us.”  Gales of laughter.

 

Aveen said, “I don’t think the book is supposed to actually be so funny.  I think we are just tired and need to laugh.”  It was true.  It was our first bedtime in Paris and we hadn’t slept on the overnight plane.  The kids were drunk with fatigue.  But we were so cozy and I was so content to be in bed reading a book that both my children were enjoying and we didn’t have to worry about anything just then.

 

The next night when I read, Aveen and Amrita did not find the book as hilarious and Amrita was finding the harvesting details a bit boring, but I had fallen in love with the book.  I felt I could relate to Summer and Jaz on so many levels.  They were second generation kids in an immigrant family.  That was me growing up.  And the grandparents in the story (Jichan and Obachaan) were just like my own parents, even though they were Japanese rather than Indian.  Obachann talked in short practical sentences, leaving out articles and prepositions.  Jichaan told stories of his childhood that seemed unrelated to anything.

 

I could also relate to just not having any Kouun for a long time.  I could write a my own narrative. 

 

“My bad luck started a few days before Christmas in 2012. Before I had time to finish my shopping and Christmas preparations, I got the flu and had to spend the days leading up to Christmas in bed.  Just as I was recovering, I started feeling this terrible pain in my abdomen which I ignored for a few days, thinking it was related to the flu. After I could ignore it no longer, I went to the Emergency Room and they told me not to freak out but I had a very large fibroid.  A week later, I had any ultrasound, and they told me not to freak out but it could be cancer....Went to a yoga retreat to learn how to meditate but fell off my bed and hurt my back...."  

 

What I really related to in the book was the effect that having had malaria and almost dying had had on Summer.  It had left her obsessed with mosquitoes.  She studied them and drew the various kinds in her spare time.  She had a special notebook for them.  She found summers especially terrifying with mosquitoes coming out at night.  She applied DEET continuously, like a tick (no pun intended), even though she realized that so much DEET was bad for her health.  She felt terror rush through her if a mosquito landed on her. One evening while on harvest, she realizes that she had forgotten to apply DEET.  It made her feel like she would throw up.  

 

The book wasn’t about this.  It was about the summer on harvest and the people that her family worked for and the challenges faced with having to do the work and a boy that she had a crush on and how he kisses her and then moves on to another girl.  But the after-effects of the malaria were interspersed throughout the book and made Summer who she was.  

 

I saw myself in Summer.  I had contracted and recovered from a fluke cancer.  I am generally high functioning.  I go to work every day.  I take care of my family.  I help out my neighbours.  I feel happy when someone is nice to me and hurt when someone is not nice. Just like everyone else.  I feel and want the same kinds of things that most people do.  But I feel the way Summer feels when she sees a mosquito when I feel I have some sort of “symptom”.  I feel a terror go through me lie a lightning bolt but longer lasting.  Sometimes, I feel like I will throw up too.      

 

I was so grateful to meet Summer, someone who felt the same way I did and whose mind I could enter.  I felt that she understood me and I took comfort in that.  Even though she is a 12 year old fictional character.

 

Jichan told Summer that the malaria had made her body sick and though her body had recovered, her mind had not.  I think that is the same way with me.  It sometimes takes longer for the mind to heal.  Jichan told her that the only way to make her mind recover was through yoga and meditation.  That resonates with me too.  And I too will heal my mind through yoga and meditation.

 

Oouch, by back….