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.