Tuesdays with Morrie [an old man, a young man, and life's greatest lesson]

I don't remember the last time I read a book so quickly. Maybe the 900-odd page Game of Thrones tomes I've been reading lately have impeded speedy reading enjoyment, but I breezed through Tuesdays with Morrie within a handful of hours. The book was exactly what I needed in my life now.

I've danced around the issue of death and like most people, unless having dealt with a loved one's death face on, have managed to avoid delving too much into thinking about it, because I haven't had to. You'd think that with my recent near death experience (surviving a cardiac arrest) I'd be all over this shit. I've wanted to be but for the most part, I was so overwhelmingly happy to be alive, that I didn't want to think about death too deeply or too often. Having narrowly escaped death's bony embrace, there were so many other immediate things to deal with and think about. Primarily, how I want to live.

I knew this would be a subject matter I would return to sooner or later...in my own time, when I felt ready. I'm interested in how different cultures deal with and what they believe about illness, the older members of society, mortality and anything else related; but I didn't know where to start, nor did I have the appetite to.

One fateful Monday, strolling through Cronulla beach and its local shops, I popped into my new favourite bookshop. After having read all Game of Thrones books on a digital device, I decided to not do that again. Life's too short to be starring into a screen more than you have to, and I wanted the tactile quality of paper and turning pages in my hands again. So I popped into The Best Little Bookshop in Town and asked for help.

"What do you like reading?" asked the shop owner. I'm not sure I reply. I usually like Paulo Coelho but I've read most of his books. I bought the Amy Schumer book off you the other week. It's not something I'd usually go for, in fact, she makes me slightly uncomfortable but I liked that I read something different (that I thought I wouldn't normally like). And I enjoyed it. There was this other book I really liked but I can't remember the name or author....I like ancient history, fiction, not that much into real life stories normally. "Have you heard of Tuesdays with Morrie? It's an international best seller, but more importantly it's a great book, very popular" he replies. He gives me a brief synopsis. It's about a college professor who gets diagnosed with ALS (a terminal neurodegenerative disease that affects nerve cells in the brain and the spinal cord, where your body shuts down til you can't move or breathe anymore) who reconnects with one of his students after nearly 20 years. The book is about one last 'thesis' they write together, summarising their catch-ups in the lead up to the professor's death. It's about the meaning of life.

Perfect I thought. I'm sick of trying to figure out what the meaning of life is for me. It's a constant work in progress. I need a break. I want to find out what some other bozo thinks about it!

So I smashed the book overnight. I couldn't put it down. And then I cried...ugly crying. And then I took two weeks to read it again, slowly, with great big pauses in between for the thoughts to sink in and to cry some more. I even cried in public at a cafe when I was reading it, I couldn't help myself. I guess it really hit home as it succinctly articulated and cemented many of the thoughts I've been having on the topics of death and living a meaningful life.

Mitch Albom (author) with Morrie Schwartz. Photo by Heather Pillar.

I could go through and list the key points for you in short form below (I highlighted them the second time around), but sitting down now in front of my computer and leafing through the book, I realise I wouldn't be doing the story, author or Morrie any justice. And everyone I suspect, may get something different out of it, so if you're interested and ready to delve into something deeper, it's best that you read it for yourself. I couldn't recommend it highly enough for anyone wanting to live a richer life, but particularly people living with chronic or terminal illness/disease.

If you've already read this book, let me know your thoughts below. Are there any other profound books that affected you and you'd recommend to read?

Working Nine to Five

Excuse my 12 or so month hiatus. I've been back at work and since energy and time are both finite, there's been only so much I can fit into my days. More so, I haven't had anything I've wanted to tell you until now.

Like my psychiatrist appointments, I need some time between "sessions" to experience life and let things ferment, to give myself space for observation and to come up with new conclusions and ideas.

Getting back to work has been great for my confidence. It's given me the chance to connect with lots of new people and reconnect with some old friends. I've really enjoyed being able to delve into and focus on projects and feel the sense of achievement from completing tasks; emotions (control, focus and sense of achievement/completion) not often experienced during parenting.

After two clients and three major projects, which spanned 10 months, I was ready for a break. We decided to go to Europe again to visit family and friends and had a lovely (and tiring because YOLO) six weeks away. I really need to rethink the types of trips we do...but that's another story.

Prior to the trip I had sunk so deep into work that I neglected (regular/scheduled) exercise, I had neglected our family and home, and most importantly, I had neglected myself. Amongst all my responsibilities and roles, it's been hard finding a balance, and this seems to be the constant challenge.

Upon our return to Australia, I was barely recovered from jet lag and I had a meeting for another project. I wasn't ready to start again, I really needed some weeks to myself at home to relax, get back to a new sense of normal and work out (consciously) what my next steps would be. Being a consultant and by nature of the work not knowing when the next pay day will be, I told myself I have to take the work, whatever work, when it presents itself. And so I did.

I wasn't in a good place emotionally or physically at the time but I just thought of the money I'd make to replenish our depleted savings after the six week European jaunt. Again I fell into the consumerist cycle most of us fall into. Work - make money - buy shit you don't need - repeat. Which I can deal with under normal circumstances when I actually like the work and the people that I'm working with, and the buying of the shit is holidays to see loved ones (three of the core reasons I get up with pep in the morning and go to work for). But this time around, there was no pep, there was no zest. Instead there was growing dissatisfaction, constant complaining and increased frustration. I was the furthest I had been from myself for a long time and for this I was really angry.

As the weeks progressed, I began to show my frustration at work and I let people know about it. As my scope at work increased, so did my frustration and contempt. I pushed back and managed to make myself redundant from the project about a month earlier than anticipated. I experienced a set of mixed emotions about this scenario: less cash in my pocket than I had budgeted for and sad about no longer being needed, but on the other hand, I now had a new sense of freedom and excitement for life. A renewed sense of hope.

I made room in my life for what I needed, which is the space and time to re-evaluate what's working and what's not; to structure my life accordingly and find my balance. I realise not everyone is that lucky to have the opportunity to do the same. So for this I'm really grateful.

Thanks for tuning in again.

Making a Cardiac Comeback

How will you write your comeback story?

A question that has plagued me since I survived a sudden out of hospital cardiac arrest in March 2014. Mine, now anyway, is more an of existential question, of finding a way to make the shock and struggle mean something, a way to help other people, a way to have an impact on the world. But for a lot of people in the same boat, including people dealing with heart disease, it's more practical than that. It's about achieving a certain level and quality of life on a daily basis that someone without health issues most likely takes for granted.

Last Tuesday (11 August) I attended the ICD Support Group at Royal North Shore Hospital. I'd been to a couple before, but this one focused on the guest speaker Dr Samuel Sears from East Carolina University. Dr Sears is a Clinical Psychologist who specialises on the psychological care of people living with an ICD. You can access his bio here.

Apart from being a really warm, funny, approachable and knowledgeable guy, what became abundantly clear is his passion for the area of mental health for patients with ICDs. This is the area I struggled with the most post my cardiac arrest so I too am very passionate about it. It also seems to be an area lacking in Australia. As far as my knowledge extends, there doesn't seem to be someone like Dr Sears who specialises in a combination of cardiology and psychology. Specialised care has to be sought independently for either a psychologist or psychiatrist through a referral from your GP or Cardiologist. It was therefore refreshing to meet and listen to Dr Sears speak about this topic because he understands both sides of the coin: the mental and physical.

His focus is on providing his patients confidence in facing their fears and struggles in the face of threat. Some challenges that ICD patients have to tackle include:

1. Coping with their cardiac condition
2. Coping with an ICD
3. Resuming activity and quality of life

In the face of the above challenges, the aim of his talk was to: increase our understanding in what it means to be confident; as well as activate one strategy that each audience member believes will help them lead a more confident life.

Dr Sears presented findings from some recent medical studies.The gist of some of these was the discovery of distress, depression and anxiety experienced by patients with ICDs and their families; and the constant fear they live with which inhibits them from living their life. Furthermore this fear leads to a lack of engagement in activities. The most profound study presented was that of exercise and ICDs conducted over 2.2 years and on 98,000 patients. The discovery was that on average, these patients moved less than 2 hours per day, which means they spent at least 22 hours per day not moving. When the survival rate was looked at in terms of most active versus least active, the study concluded that the most active patients were most likely to be alive four years later. When talking about activity we're not talking anything complicated or extreme either - just some form of basic movement, as opposed to being sedentary. Conclusion: some, any movement is better than none.

In fact, data now suggests that doctors have been too safe with the prescription of types of activities that heart/ICD patients can partake in. What they do know is that muscles, joints, the human body and mind have been designed to function better as a whole with movement. Of course it is important to note that competitive athleticism remains very much a grey area and clinical judgement should be made by a cardiologist.

Dr Sears eloquently went on to discuss confidence in cardiac patients, how to achieve quality of life, and perceived safety and confidence in the context of threat. Some standout points:

• Quality of life (QOL) is personal and point in time dependant
• Your definition of QOL is under your control
• Confident living is the fuel for the achievement of QOL
• Arrhythmia is random, don't know for certain what causes it
• Doesn't matter what causes arrhythmia, but you have strategies to keep you safe (medicines, ICDs and monitoring)
• Can't control arrhythmia but don't allow it to control you!
• When it comes to confident thinking and living, work out what activities are your goal, and work towards these
• These activities should make you feel alive and well. Think about what activities you liked to do in the past, before getting an ICD or having an ICD shock?
• Be proactive, test the limits safely
• ICD gives safety to make a cardiac comeback, essentially helping you deal with a condition that is spontaneous, unpredictable and potentially life threatening
• QOL is an achievement, not an entitlement
• A shift from victim to survivor reduces stress
• Mental health is what we believe about the future; it's earned and deliberate
• Have an ICD shock plan
• Foster confident relationships by creating intimacy and finding ways to feel closer to the people who love you

People with heart disease are faced with their own mortality in a very real and immediate manner. Heart disease which some may think makes you weaker, actually makes you stronger. Regardless of the adversity in your life it's up to you to decide whether you face it as a victim or a survivor.

That's a lesson I learned early on in life and I guess what drives and motivates me to take action rather than sit back and be a passenger in my life.

So what was my one strategy I took out of this presentation that will help me lead a confident life? It was the reassurance that I'm doing everything I can possibly be doing to prolong my life: medication, ICD, regular monitoring by my cardiologist and GP, regular exercise, balanced eating, minimising stress, and most importantly taking time out to have fun and create and enjoy wonderful moments with the people I love.

How will I write my cardiac comeback? I think the above is a damn good start. Only time will tell what happens and evolves beyond that.
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Some interesting facts and statistics:

• The first human ICD implant occurred in 1980.
• There's 4-6% chance of and ICD shock in an average year.
• Activity avoidance in kids is 84.5% and 39-55% in adults.
• A weaker heart (e.g. 35% ejection fraction) has a tendency to act irregular.
• Risk of driving in ICD patients is the same as other people - it's equally as dangerous.

You can view a similar presentation that Dr Sears has done before, The Medical Trapeze: Living Confidently With a Safety Net.

Support Group at RNSH

A couple of weeks ago I attended a support group at Royal North Shore Hospital (RNSH). It was primarily aimed at an "older" audience, although there was another lady near my age, Kim, who also attended.

It became very clear that not only different age groups, but also people, have different concerns and at times approaches to life and living with an ICD. The best example of this was an older patient exclaiming that she used to do everything right and still had a cardiac arrest. So post arrest and having an ICD inserted, she no longer takes things too seriously and instead indulges in a nightcap or two...on most nights. I guess we all have different ways in dealing with things, and major events like a health scare can motivate us to live life quite differently to the way we did before.

Kim pointed out this difference and outlined that due to having two young kids to look after (plus heart health complications), her concern is prolonging her life as long as possible. So for her, there is no indulging in a nightcap or any alcohol in fact at all, ever.

Myself on the other hand, I like to employ the more balanced French/Italian/Greek way of living: having the odd small glass of wine with a meal. Good for the blood and circulation I say!

There were two speakers organised for the day:

1. The lady spoke about needing to understand everything that was (medically) happening and taking control over her own care.
2. The man spoke about having a complete life turnaround. He used to be a high-flying successful business owner who worked too many hours, didn't exercise and ate and drank really badly. Since his arrest he's sold his business, exercises 5 times a week and enjoys spending a lot more time with his family and friends.

It was interesting to see the differences between the two speakers. The floor was also opened up to the audience over a lead discussion, as well as a question and answer. Even thought quite a few experiences were revealed, it was reassuring to see the differences and also know that most people felt very similarly about having and living with an ICD. I think it's important to connect with others going through a similar experience so you don't feel as isolated or alone. Family and friends can be supportive but unless they've been through the same experience, they just don't get it.

As much as I need to understand what's logically going on with my heart and why what happened did happen, I'm afraid there aren't any certain answers for me. I've been working hard to let this go so I can go on with my life and live without fear. So I've taken the more high-level, focus on what I can control type of approach. Similarly to the gentleman speaker, what has changed drastically for me are my values and consequently the way I live my life. I've given myself no option but to prioritise regular exercise (3-5 times a week). I feel that's one major positive thing I can do not only towards my recovery, but more importantly for my long term health and vitality. Never before in my life have I had this clarity, motivation and dedication towards my exercise and well being. As the noise drops away, things seem a lot more simpler too and life more enjoyable.

I'm looking forward to attending the next ICD Support Group at RNSH later this year. It's supposed to be aimed at a younger target audience and have a large focus on exercise with an ICD. I bet I will have a lot to offer to the conversation!

Healthy Body, Healthy Mind

St George Hospital have a Healthy Heart Program run by physiotherapists at the hospital's onsite gym. I'm currently half way through my fourth week of physical rehabilitation. The program runs for six weeks total.

On the day of my cardiac arrest, the ambulance officers had taken me straight to St George Hospital and I stayed there in ICU until being transferred a few days later to RPAH, where I would be monitored by my cardiologist and getting the defibrillator inserted. I only vaguely remember someone slipping me a pamphlet and explaining the program while I was getting packed into the ambulance to head to RPAH.

It was weeks later before I came across that same pamphlet, on top of my washing machine of all places. I knew then I had to follow up but didn't do anything about it. The truth is I didn't feel ready to even think about the program, let alone sign up for it. A few days after this, the coordinator rang me to see how I was going and give me more information. It was really kind of her, I really needed her to organise it all for me and she did, it was the gentlest ever nudge to get me on the road to recovery. I'm so glad she persisted.

I didn't know what to expect and it all seemed overwhelming. Some previous gym sessions have not proved very fruitful or enjoyable. Once I gave a personal trainer a try. She totally ignored my heart condition and any information I gave her about myself (so much for the survey!) and got me (trying) to do chin-ups on a bar. WTF? Anyone who knows me personally will know that that type of exercise is not for me. Needless to say I never went back to that personal trainer. So much for personal...

Anywho I digress. I went to the Healthy Heart Program with an open mind and with time, have found my heart has totally opened to it too. I love it. I don't want to miss a session. It's on twice a week. My session group is on Tuesdays and Fridays in the afternoon. It's an hour of me, the machines and my music. I get the opportunity to clear my head and in a comfortable, caring and encouraging environment, to heal. Although I'm the youngest person in the group, I feel right at home. Everyone is so lovely and there to do the same thing as me: heal, learn, escape, exercise, be healthy.

The gym session is essentially run as a circuit. The circuit includes bike, treadmill, leg presses, leg weights, stepper, and free weights, amongst other things. Prior to starting the exercise program, I had gone in for an assessment where we discussed my case and requirements. Therefore every exercise is then specific to each person in resistance, weight and freedom of movement. The exercises are usually limited to six minutes each or three repetitions of eight, 10 or 12. Or in the case of the stepper (which I progressed to this week from the ordinary steps) for me, three repetitions of 30 seconds each. We all have a personalised exercise plan, which has been created by one of the physiotherapists. After each exercise one of the nurses/physios will check our stats (BMP, oxygen levels, blood pressure) and record them, so we are constantly being monitored. The fitter that everyone gets as time progresses, the more the exercises are increased in intensity, offering a slow and gradual build up.

On Tuesdays after the gym session, they also offer an hour education session with a different topic every week including: physiotherapy and general recovery information, occupational therapy and nutrition.

The Healthy Heart Program has done wonders for my confidence. I feel more strong, energetic, alert, connected, focused and fit. I feel safe and have around me people who are going through a similar experience. I also have goals again such as continuing exercise to be fit, healthy and to strengthen my heart. Currently I've committed to two gym sessions and two (long) walks a week (due to our increasing sedentary lifestyles we should all ideally exercise seven days a week, even if it's for half an hour). I've increased awareness around my nutrition and am once again focusing on losing the left-over post-pregnancy weight (something playing on my mind constantly and reinforced by my cardiologist on my last check-up). Excess weight has been directly linked to heart disease and problems.

The group varies and includes people who have recently had a quadruple bypass, double bypass, stent insertion and mechanical valve transplant. I'm the only one in the class who had a cardiac arrest and defibrillator inserted. Coupled with my age, I'm a unique case and sense that the "oldies" are more interested in what got me there than other classmates. This means I have made a lot of new friends!

Interestingly enough a few of my classmates are quite fit and regularly exercised before their operation/procedure which got them doing this program. One of the many common feelings expressed is that of disappointment. The disappointment arising from "having done the right thing" and then still ending up having heart issues. I can relate to this intensely but the more that I focus on my exercise and continuing to look after myself, the more that this disappointment fades. The more I accept that I will still try hard to do the right thing and be the best I can be, and that sometimes, shit just happens. The more that I also start to release the fear associated with shit just happening.

Although the physical rehabilitation is doing wonders, I have also come to acknowledge that for me, it's not enough. I also need to nurture my mind and psyche. I started about a month ago with seeing my holistic therapist and with her help, started dealing with my emotions as they were coming up, as well as getting my acupuncture and herbs to assist in my recovery. These treatments alone are generally enough under normal circumstances, but going through such a traumatic experience with the cardiac arrest, I knew I needed more.

My cardiologist referred me to one of his colleagues who is a psychiatrist with a focus on helping people deal with post traumatic stress. My psychiatrist is a really lovely, personable man with a good sense of humour, who made me feel instantly comfortable. As my friend Kate said yesterday (totally out of context but still very applicable): "sometimes you have to kiss a lot of frogs". I've seen a psychiatrist many years ago who was a total fuddy-duddy and well, just plain scary. Same goes with cardiologists. Again, I'm lucky to now have a solid and suitable network of healthcare professionals. But I am highly aware this is not always the case for everyone. So I urge you, if you're not feeling right or getting adequate care from any of your healthcare providers, you will have to kiss a few frogs and try others, until one sticks.

Last week I had my first session with him and even though we only had the psychiatrist's hour (50 minutes) to start discussing my history, I already feel better because I feel empowered. Rather than continue to wallow in self pity and uncertainty, I've taken responsibility for my emotions and taken steps to get help where I need it.

The healthy mind and healthy body concept is like the chicken and the egg argument. Which comes first? I don't think it matters. The point is that you pick one and the rest follows, it's inevitable. The most important thing is that you make a decision and take action.