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.