Beating the Odds

An open letter to my mother highlighting the power of her determination and courage

Dear Mum,

I know you can’t read this, but I need to write about you. Your strength, bravery and resilience throughout your 76 years of life need to be shared. That despite illness, you still managed to be a wife, mother, daughter, sister, aunt and grandmother.

Even though I lived in the opposite hemisphere in the latter part of your life, you were always present, regardless of our geographical distance. And you are still today even though you passed away nine years ago.

I feel somewhat responsible for the start of your medical woes, but maybe my birth, and your subsequent fall in the hospital soon after, was a blessing in disguise. Of course, I don’t remember much from those days. I was just a baby — and a rhesus one to boot. Your negative and my positive blood collided and I made Dad almost faint, I was so purple!

Your fall in the shower seemed to ignite a cascade of problems that transpired into a diagnosis of a growth on your cervical spine. A benign astrocytoma.

There were no fancy diagnostic tools like CT scans back then, but they determined you needed surgery and radiation to eliminate the unwelcome intruder.

It was going to be touch and go. No promises of a cure; just hope that an aggressive approach would work, otherwise, your prognosis was poor. Dad was told to hold his breath for the next four years ( and was advised not to divulge this to you, which would not happen these days!)

Time was of the essence.

Dad has filled me in on some of the gaps that I failed to ask you when you were alive. Why, oh why, do we have so many unanswered questions when the bearer of truth is no longer with us? Like the day, just recently, that I asked him for my exact time of birth. Hannah was into astrology and how precise time and date can influence your personality and fate. Dad’s response?

Sometime in the morning!

It is ironic how those important, finer details can slip our minds so easily as the years pass by.

Although the truth about your predicament may not have been spelt out, you knew your condition was serious. The one thing you never lost sight of was the welfare of your kids. Your determination to recover from the surgery, cope with radiation and rehabilitate afterwards was primarily driven by our welfare. I have heard that you said:

Who is going to raise the kids if I’m not here?

You did not like the idea of either your parents or Dad’s taking your place.

Apparently, I do owe them a lot of thanks for taking care of us all when you were sick. I vividly remember both sets of grandparents being a huge part of our lives despite them living a couple of hours away.

I don’t recall much as I was only two years old when you had the surgery, but I know the reason I cannot drink milk to this day is that I swear Grandma set the lunch table soon after breakfast, pouring the milk into our glasses at the same time.

I also have memories of not being allowed to just barge into your bedroom, but that’s it.

When I was much older, I discovered a pair of crutches hidden at the back of the hall closet. I asked you about them, and you fobbed me off. Forever in protective mode.

When I decided to go nursing, I became more inquisitive as to what happened to you. You remained hesitant to tell me much. It’s okay, I get it! You know I am now a mum and I would do the same if it was me in your position. There is a fundamental need to protect our babies, even if they are adults.

There was a large chunk of my childhood that was normal once you recovered from months of rehabilitation. You kept house, prepared a home-cooked meal every night, had the biscuit tin always well stocked and made most of our clothes.

Again, you played the cello, were heavily involved with the church and were the Queen of dinner parties and entertaining. With the prospect of being able to travel, you went back to work at the bank, but carefully planned your hours so that you were home soon after we got in from school. Trips to Australia and Europe eventuated.

You taught me how to knit, sew, stitch and bake. You were the epitome of kindness and compassion, often helping out others when in need. Of course, I never appreciated any of this at the time, especially all those fancy dresses, fair isle cardigans and beach ponchos, but I sure do now.

It’s just a little too late to tell you that.

The day I moved to the other end of the country you suddenly had the urge to tell me your story, but I was not really listening. Actually, I remember feeling mad that you chose to do so when I had fifteen minutes before heading to the airport to start my first job as a nurse. My mind was elsewhere.

As the months passed, I did however start pushing you to deal with the symptoms that were starting to recur. Knowledge can be a dangerous thing.

You had maintained appointments with your neurosurgeon and were touted as being one of his miracle patients, defying the odds and surviving this long. I could see you struggle with fine motor movements and you were so clumsy, always dropping things or falling over.

The specialist was reluctant to intervene further, unsure of the consequences of more radiation on top of the heavy dose you had already received. Over the next year or so, I encouraged you to pursue a second opinion, especially since there were more advanced diagnostic tools such as the MRI.

I then took off to explore the world.

I was pretty upset to arrive home three months later from that overseas jaunt to a typewritten letter from you nestled in a huge pile of mail. I still have it.

As you can see (from the address) we are Grandma and Grandad’s as after several appointments with the Radiologist he thought he would have a go at helping me. So last Monday we came to Dunedin and I have been going to the hospital every day for the planning bit, sometimes 2–3 hours a day. They have been most informative, helpful etc… The worst bit was signing a paper that they were not responsible if I became a paraplegic (or worse) for the position of my treatment is critical.

I felt so guilty reading this; that I had forced you into finding solutions when the possible horrific consequences were there, glaring back at me in black and white. I was also disappointed that, again, you had taken the protective approach and had been going through this for a good three weeks while I was having a grand old time on the other side of the world. You did not want me to worry.

I understand now though. If it were me, I would have done the same.

Because the tumour had reappeared at the cervical spine and brain junction, it was too dangerous to operate. Instead, steroid therapy in combination with another dose of radiation was recommended.

Unfortunately, it played royal havoc on your body and fast-tracked the inevitable loss of function.

During this period, I loved our frequent phone calls. You were so good then at keeping me in the loop. I came to see you as often as I could and I have to say, they were the best times we had together.

I especially remember the days during your treatment when I would fly down for a weekend now and then and we would be at Grandma and Grandad’s. Do you recall some of those heartfelt chats we had at night once we were tucked into our beds?

The most vivid memory is when I asked you about the day you were gravely ill; the one after Dianne’s wedding. You had refused to take your steroid medication when you got back to the hospital and it caused a huge calamity the next day.

You kept on insisting we turn the light on and yet it was broad daylight — and the light was on. What you told me that night makes me wonder if we almost lost you then, as you recounted being in a dark tunnel and couldn’t find your way out.

I was heartbroken you couldn’t come to my wedding that had been carefully planned before our overseas trip. You were too sick to fly or be away from 24-hour care. We tried to make up for it, immediately travelling to be with you, but it just wasn’t how I imagined that special day to be. You were meant to be there.

Instead, you were lying in a bed in a Hospice. I knew very well what that meant; it was clear your days were numbered.

But, you continued the fight, you were such a warrior! Nothing was going to stand in your way. Mum, you are the only person I know that has come out of the same door of a Palliative Care facility that they went in through. Not out that hidden back exit.

But you did it. You defied the odds. Again!

There were many challenges that Dad especially had to face when you were well enough to come home from the Hospice. It is so hard to be a caregiver when you didn’t sign up for that job. It is difficult enough to be one even as a nurse sometimes.

Throw in emotional attachment and it can become the perfect storm.

I was now living on the other side of the world and of no use. Why, oh why, did I agree to move so hubby could pursue his career?

Although your legs didn’t work at all and your hands barely did, you manoeuvred yourself in your electric chair, tackled crossword puzzles every day and even continued with some simpler crafts.

You had your finger on the pulse of the family you cherished, and knew all the goings-on with the numerous relatives. You adored your nine grandchildren and even although none of them lived nearby, you did what you could to be a wonderful Grandma to them.

It was a rare treat for us all to be together, but when we were, you were your happiest. You couldn’t cook like you used to but were well qualified to bark instructions from your chair to Dad, who had capably taken on duties that he never had been responsible for when you were well.

You agreed to move to Christchurch to enable Dad to lead a fuller life, where the climate was less fickle and the classical music scene more diverse. You quickly settled into a new care facility which was more like a hotel.

For four years, you chugged along, accepting your new reality; going to concerts with Dad, whizzing around the mall independently in your electric chair and taking the wheelchair taxi to his place at least twice a week.

Slowly your condition deteriorated, and you had to move into more advanced care. In both places, you were the youngest resident which had to be a bitter pill to swallow.

But although you were trapped inside a diseased body, your mind was crystal clear and your voice was your remaining powerful tool. You used it, often causing chaos as you advocated for your new friends and stood up for patient rights. I know where I get that side of me from, and I thank you for that gift!

Unfortunately, there were several incidents related to both misfortune and negligence that sent you to the hospital, but you were always stoic and somehow pulled through. You even endured the devastating 2011 Christchurch earthquake that killed 185 people, destroyed the inner city and hurtling your little television set onto your bed, narrowly missing your defunct legs.

Mum, it was so hard living on the other side of the world, knowing each time I saw you, it could be the last. I felt terribly guilty telling you and Dad that we were going to be moving to Montréal all those years ago. I felt like I was abandoning you.

But in your typical unselfish way, you were thrilled for us. You never once expected anything from me, nor made demands or protested. You always wanted nothing but the best for your kids.

The day I got the call from Dad that you had taken a turn for the worst, I was sitting in an outdoor marquee waiting for Hannah’s high school graduation ceremony to commence.

It wasn’t the first time that Dad had phoned to say things weren’t good, but this time it was different. My heart sank, but right then, I had to be a mum. I had to be brave.

Those were the most difficult hours of my life, knowing you were dying and I wouldn’t be at your side, even if I tried.

My last conversation with you was just me jabbering on the phone while Dad held the other end to your ear. I just talked; about Hannah’s grad ceremony and how funny it was that the kiwi girl won the French prize. How proud I was to be your daughter, and how your fortitude had profoundly shaped me into the woman I had become.

And that it was okay for you to let go and be at peace. You had been through enough. I knew you could hear me, even though you couldn’t respond.

I still have regrets that I didn’t come home for your funeral Mum. I put my work first, not out of selfishness, but knowing you would be cross if I gave up the opportunity that had just come my way. There was nothing that I could do to reverse the awful reality that you had passed.

I knew how proud you were of how I had re-established myself after my divorce and if I did drop everything, it would set me back considerably. You would have hated that. It was ironic that I had shielded you from that drama for years, but I didn’t want you to worry about me when you had enough on your plate.

Like mother, like daughter.

Six weeks later when I did come home, Dad and I watched your funeral service together. I just couldn’t do so until I was home with him. It was a beautiful tribute to you.

True to your organized self, you even had the details of your service planned out with all your favourite readings, hymns and music. Although a lot of tears were shed, we also had loads of laughter as we reminisced back on your incredible life journey.

I think I was of more help to him then than I would have ever been if I had come straight away.

Mum, you may well be cursing me for sharing your private battle in an online community. I hope you will forgive me in the knowledge that your story needs to be heard. You fought so hard for 48 years of your life!

I wrote about you because of the important messages your resilience demonstrates. You cherished every minute of life, knowing its precariousness. You never dwelled on your situation or blamed others for your misfortune.

You acknowledged your reality and took charge, rarely complaining. Despite your dependence on your basic needs, you maintained independence and dignity for the things you could do.

A threat to our health is a challenge most of us will face at some point in our lives. Your story demonstrates the will to live can defy the odds. The statistics on surviving the type of tumour you had were poor, but you managed to beat those odds and live over 40 years longer than you were expected to.

You got to see your children grow into accomplished adults and to be a proud Grandma. A lot of people will meet an earlier fate because they have no support or give up. They have no will or faith. Sharing your story may help others negotiate tough choices and accept new realities because you have proven the power of a positive attitude can work.

Your strength and determination are embedded in me. I am who I am because you taught me to never give up. To stand up and speak out when there is an injustice. To live in the now and not worry about what you can’t control. To face whatever is thrown your way, negotiate it and embrace it. That we have one shot at life, and that each day is a precious gift that could be taken from you at any time.

You may have been gone for years, but you will be forever present in my life. Keep resting peacefully Mum.

Love, always

Barbara.

This story was first published on Vocal Media