My Most Challenging Year Part 1: When Family Tragedy Strikes

As is tradition here on EJ, this is my end of year post, or two posts in this case, recapping the year that was and my plans for the year coming up.

Yesterday I read over the article I wrote at the end of 2010 – My Big Plans For 2011. Things didn’t go exactly according to plan – they rarely do – but 2011 was particularly challenging. Life has a habit of blindsiding you, but I have to say that 2011 in particular was one that I really did not see coming.

It all started well enough. I set three main business goals for the year: A software project I had been thinking about for a long time and started in 2010, a new course called The 2-Hour Work Day and continuing to develop this blog into an independent entrepreneur resource.

I finished writing the free report for the 2-Hour Work Day, including sourcing a cover design and logo mascot. The report is 100% done and ready to go, but I’m not going to release it until I am ready to produce and sell the course behind it.

While I was writing the 2-Hour Work Day report during the first half of 2011 I was transitioning in a new team of wonderful writers here on EJ. I also brought on an editor to help recruit new writers, and edit and publish articles, freeing me up from the last remaining jobs I do to keep this site going.

Taking the final steps to remove myself from the maintenance of this blog turned out to be incredibly important, but not for the reasons I expected.

In June my mother had a series of small strokes in her brain stem. For the first time in my life I found myself staring at a loved one in the ICU of hospital. She had made some bad decisions with her health, many because she was afraid of hospitals, to end up supported by a ventilator, with an irregular heart beat, fluid on her lugs, tubes connected to her and all manner of horrible things going on.

You can read more about what happened in this article I wrote a few weeks after my mum had her stroke – The Day My Life Changed.

Our Life In Hospital

From the day that mum entered hospital I have been with her. I’ve now spent over six months going to the hospital every day, including weekends. I’m writing this sentence, sitting next to my mother while she has an afternoon nap, a common occurrence after all the therapy work she does in the mornings.

My Temporary "Office" In The ICU

During the first week in the ICU, my mother was borderline. As is standard procedure in the ICU, after a week on life support we (me and my mother’s partner) were asked whether we wanted to take her off support. We decided that while she had a chance we would give her more time to recover, even though she was barely conscious. The doctors told us to prepare for the worst.

Several times while in the ICU we were ushered into a small “family room”. This is the room that you will know from TV dramas, that place where doctors have to do the horrible job of telling people how their loved ones are. It was a surreal experience to find yourself in that place with someone telling you that the person you care about the most in your life was not likely to recover.

The ICU experience shook me hard. I would go so far as to say that I am not the same person I was after seeing what happened to my mother in there. Of course the purpose of the ICU is to help people recover from acute issues, but obviously if they are in the ICU they are not in good shape. My mum had a stroke with many complications related to a thyroid disorder she has had for years, which made for a tough experience – and that was just for me observing – I can only imagine what it was like for her (thankfully she can’t remember any of it today).

Since my mother was not showing much sign of consciousness she was on what is called hourly observations. This means the nurse has to do a round of procedures to assess how conscious she is using a scoring system called the Glasgow Coma Scale. This involves asking her to squeeze your hand, open her eyes, wiggle her toes – basically move any part of her body on command. When she doesn’t do it on command, they have to use pain – usually a pen pressed hard on to her fingernail – in order to elicit any response.

Observations are done once an hour every hour, including at night. During a time when you need sleep to recover you are kept awake with constant prodding and pain to make sure you are not having more strokes or seizures. On top of this you have hourly blood taken from you, drugs pumped into your veins via canulars, a machine breathing for you via a big tube down your throat and liquid food pumped into you via a tube down your nose. It’s basically torture.

Things progressed slowly and we didn’t know how mum would go. Her heart stabilized and she began breathing unassisted. The next big decision we faced was surgery in the ICU to go down her throat to see if some nodules were cancerous or something else. We consented, had a nervous wait, and eventually found out they were not dangerous.

Since it is not recommended to have breathing tubes down your throat long term, the next decision was whether to have mum get a tracheostomy (trachy), which is a hole in your throat where a tube goes to help clear your airway when you can’t breath or swallow or eat safely, which in this case with mum and her stroke, were all damaged in some way. The surgery was done safely and the trachy is still with us today.

Although my mother still had not improved neurologically very much (not very responsive to commands), her body was stabilizing. After three weeks she was in a condition to go to the stroke ward and get out of ICU. The ward would become her new home.

The roller coaster ride didn’t stop then. I won’t go into great detail as there are too many events to talk about. We’ve been through about 10 different emergencies (called a MERT at the hospital) due to breathing issues, had several infections, my mother pulled the trachy tube out herself once, more surgery to place a tube in her stomach to feed her liquid food, another surgery to remove scar tissue in her throat, and many other challenges.

Not a week goes by where you don’t deal with something. In fact just this morning as I write this sentence my mother had another emergency due to not getting enough oxygen in her blood.

By and large though, she is much more stable than she was. Her short term memory isn’t great, which in some regards is a blessing as she forgets what happened to her yesterday and weeks before, including emergencies, surgeries and other not so fun things.

She has trouble focusing on more than one thing at a time, but her personality is still there. She laughs and jokes with us, and although she can’t talk with the trachy, non-verbal communication, lip reading and writing (she is learning how to write with her non-dominant left hand while her right is recovering movement slowly), all make basic communication possible.

She can’t rise out of the bed, sit up, walk, talk, eat or pretty much do anything herself. She is progressing in therapy in all these areas, but she has a long way to go. It’s a precarious process, as for each step forward we’ve taken a step back after an emergency or infection or complication. Thankfully mum is not suffering significantly, and for most of the day she has me or her partner by her side, not to mention her addiction to TV is well maintained and enjoys a daily afternoon nap.

One of the saddest realizations for me as a result of staying in hospital so long is seeing most people suffer alone. Patients have the nice nursing staff and the occasional family or friend visit, but most of the time they are in bed with no company.

I don’t know whether their family is working or in another state/country or just don’t care, but the norm is for people to be alone for most of the day, staring at the ceiling, enduring treatments, crying and being lonely and depressed. It’s not like this for everyone all of the time, but for many people, that’s the predominant experience they have – and for some, the final experience of life before they die.

The Gift Of Time

Ever since I have had my own business I’ve relished the freedom. It’s the core reason I am an entrepreneur. It’s the main thing I promote to other people as why running your own business is so desirable.

I’ve enjoyed this freedom in many ways. I’ve travelled the world for 8 months with no deadlines to be anywhere any time, or budgets to constrain me. I’ve spent countless hours in cafes, taking my time to write articles and run my business with no boss telling me what to focus on. I’ve had many days where I’ve done absolutely no work at all, and days I’ve spent hours on a project I love, not wanting to stop.

All of this has been wonderful – a gift – but I didn’t realize the real gift, by far the greatest gift my business has granted me, is the freedom to go and help my mother each and every day without worrying about money, or getting fired, or needing to meet someone else’s deadlines.

I’ve promoted the “Internet lifestyle” over and over again, but now I can say unequivocally, the reason to start your own business is so you can be there for your family.

I’m with mum every day seeing how much she progresses in each therapy session. I’ve seen important things that I’ve passed on to doctors, nurses, physios and therapists that would have otherwise gone unnoticed. I’m the only person who deals with every other person helping my mum, so I can connect dots and spot inconsistencies. I’ve been there when my mother wakes up from a nap scared, wondering where she is, able to instantly comfort her simply by smiling and letting her know I am there.

These are benefits that every patient in the hospital should have, but they don’t. This is not a role for a staff member at the hospital, it falls on family or loved ones as they care enough to look after the finer details, the little comfort things and have the intimate knowledge about the person they care about so much necessary to help.

The Long Ride Home

Looking after my mother has been both a stressful experience and at times amazing too.

Mum and I at the 2010 Brisbane Greek Festival

For about two months she wasn’t really awake, more like a body that we kept going and hoped would improve. Then one day while she was in her wheelchair I asked her a yes/no question, as I had done countless times before without any clear response. This time I noticed a slight nod of her head. I wasn’t really sure though, so I dismissed it, at least until two days later when in the same situation she very clearly responded with a yes nod.

The day after that initial response my mother “woke up”. Her eyes remained open, she followed conversations and was able to nod and shake her head to answer questions, something she couldn’t do consistently before.

It was one of the best days of my life.

Her improvement opened a window to recovery that before looked closed, and opened a line of communication we were desperate for.

It was also an incredible day because of how all the staff reacted. Seeing people who were basically strangers get so excited – fighting for their turn to help my mum – just so they could see her awake and responding, literally brought a tear to my eye. At that moment I fell in love with my fellow human beings on a level I have never before and understood why they love their job. There is nothing more rewarding than helping another human live again.

Although I’ve struggled with the stress and raw brutality of this situation, early on I had to reach a place where I could find a purpose – a focus for my energy – otherwise I would spiral into terrible places. This was necessary for me to function and to be helpful to my mother.

My main goal became to ensure my mother had the best care and that there wasn’t anything extra we could do for her or become aware of. My mother’s partner did a great job researching everything as we found out more about her conditions. We spent most of the day with her initially, but he had to return to his job eventually. I started doing the day “shift” while he manages the nights after work.

Because I’m there during the day, I participate in all of the various therapies she goes through. This includes physiotherapy, which at the moment involves working her way towards walking and building her core strength so she can support her own body when upright.

She works with an occupational therapist, who helps with motor-skills required to do things with her hands and arms, like pick objects up, move them, etc. She also works daily with a speech therapist, which at the moment is the most important role because our big goal is to remove the trachy so mum can talk, eat and breath like normal and move on to more physical rehab.

Speech therapy has been an up and down process. It’s a tough experience for my mother because she has to endure coughing fits many times a day to learn how to swallow again. Imagine that feeling when something goes down the wrong pipe (your airway) and you cough – that’s what she experiences constantly as she learns how to swallow again.

By and large mum has wonderful doctors and caring nurses – people I label heros given what they do day in and day out (anyone who works with spew and poop every day is a hero in my book!). I did find myself becoming extremely frustrated now and then with situations and people, but over time I’ve simply had to let things go and accept some things are out of my control. This has become easier as people and events become more familiar, things stabilize and patterns formed.

Overall the hospital experience for me has been like nothing else in my life. Previously I was afraid of hospitals, afraid of sick people and being exposed to the reality of the suffering aspect of life. There’s nothing like immersion therapy to desensitize you to things and in this case it has been life changing.

On one level I hate that I’ve come to a point where I can be somewhat unattached to the suffering of others (besides my mother of course), but it’s necessary when you are exposed to it all the time. I still fear what bodily suffering may be in my own future, but at least it feels more like a fear I know better – I know what to expect. As Kylie Minogue sings – better the devil you know.

You Don’t See This Coming

For me one of the realities I’ve had to confront is how life changing a stroke is for people. It’s like you go to sleep and then wake up without a part (or parts) of your body working anymore. You don’t see it coming and you just have to come to terms with the loss.

A stroke forces people to give up dreams, to realize that just functioning as a human – eating, drinking, walking and talking – is what you work on for your near future.

Forget about doing your job, or playing your music or creating your craft, or building your business, or playing your sport – or whatever your life was about – that’s over for you now.

The ward my mother is in has different patients come in and out every week. Primarily they have had a stroke, which can result in varying levels of paralysis, from complete lack of movement (locked in syndrome) where your mind is active but your body isn’t, to difficulties with swallowing and breathing, where you may need a trachy like my mother, to one side of your body weaker or paralyzed, or perhaps not much impact beyond your balance being off, or your mind being a little bit “slower” than it used to be.

Recovery time can last from days to weeks to months to years, and some things you never recover.

One doctor from the ICU who I bumped into at the hospital cafeteria a couple of months later asked how my mother was. At the time she had just woken up so I was excited that we could communicate with her again. The doctor said that was good, but we had only just begun the process. She said we should look at the next three years as a recovery period, that while we were in hospital we were not out of the woods, so to speak. This is not like an infection or a broken bone – this is long term.

Since we are in a neurological ward there are patients with epilepsy who often come in when their seizures get out of control. On several occasions I’ve heard thrashing going on in the bed next to us and had to grab a nurse to tell them our roommate is having a seizure. Nurses calmly come over and make sure the person having the seizure doesn’t damage themselves while thrashing about, as if this is something normal (of course for a nurse in this ward it is normal).

Just recently a patient who was with us for a month, who had a stroke and a trachy like my mother progressed really well – to the point where her trachy was removed and she was ready to go home. I looked to her for inspiration on some levels because she is just one year older than my mother.

It was friday night and she was due to catch a train home saturday morning. At 4am that morning she had another seizure and found herself in the ICU again. The next week she came back to us in the ward and has not been the same since. She spends most of the day crying, asking where her son is, and is confused and scared. She continues the long journey to recovery.

I think I’ve written enough about the hospital and what I’ve experienced. You can tell this period of my life has had a lasting impact on me. While I’m better for it on many levels, it’s also been a harsh immersion in a world I was not very familiar with before – a world of suffering, and recovery, of unpredictability and a demonstration of how caring humans can be for each other.

What I can say is that the Australian health care system, and the people that work within it that I have come into contact with, are wonderful. The press has a habit of complaining about healthcare system problems, which of course there are, but the good parts do not get enough credit or exposure. What these people do day-in and day-out and the level of service provided, must be praised. I’ve never felt more that I truly live in a “lucky country“.

Family Tragedy and Health In Focus

Just before my mother had her stroke she was in Toronto visiting a hospital to look after her own mother. My 90 year old grandmother had been having her own set of problems, mostly lung issues, but seemed to be getting better. As my grandmother showed signs of improvement, my mum returned to Australia to sort out her own health problems.

My Grandmother and I in 2008 in Toronto

Unfortunately my grandmother decided she didn’t want to live anymore and progressively got worse after my mother left. While mum clearly had a lot of fight in her and still does, my grandmother, who had never been the most optimistic person, decided she had had enough, which probably was cemented when she heard about what happened to her daughter.

My aunt in Canada was on daily hospital watch on my grandmother, while we were doing the same here in Australia with my mother. Our family is not large, so we don’t have the human resources to back each other up, especially given the distance between us, so she had to do this job without us.

A week before my mother woke up, my grandmother died.

I actually believe my mother and her mother (who share the same birthday), were in some form of communication despite being in different countries and not fully conscious. At one point they were mirroring each other in symptoms even though there was no link in their medical conditions. I think they had to sort something out (they have a long and rocky history together), then once my grandmother passed on, my mother woke up and began the process of recovery that we are still working on now.

Needless to say, this was a very tough two months for me and my family. When my grandmother died, my mother and I were supposed to be there, to be at the funeral along with my aunt, uncle and cousins. Instead I had to write a short eulogy note about my grandmother on behalf of my mother and me which was read out at the funeral. As my aunt said, it wasn’t how things were supposed to go, but 2011 was not exactly going according to plan.

On top of these two big family events, I’ve taken a friend to emergency for a broken thumb after falling over skating, then back again for another friend to have her appendix removed and again a week later when her stomach got infected after surgery (which also included a nurse giving her a drug that caused a hysterical reaction). I fell off my bike and had my right wrist in a cast for a month and visited the doctor myself several times more for scans to make sure my own body was holding up during all this stress.

Oh, and Ramses our cat has been in vet hospital twice too, once for fleas and another time for a life threatening blocked urinary tract issue that we are still treating now.

What Do You Do When Everything Seems So Fragile?

This year has highlighted how transient and temporary things are. Even what we value the most – our own bodies and the people around us.

For two months, especially when my mother was not neurologically responsive, I questioned whether my mother would want to be alive in a body that barely functions. I asked myself whether I would want to be if I was in that situation, and I found myself saying no, I’d rather die. I asked my dad and friends the same question and most responded the same, although if there was hope of recovery they would want the chance to do so.

I’ve had to contemplate some hard questions, this time in stark reality rather than hypotheticals.

What happens when things you care about die?

Life is full of suffering and I’m seeing real examples around me every day. As long as you live, then you will suffer at some point, especially as you head towards death. Sure you might go in your sleep, or in a sudden tragic accident, but there’s a good chance you will be diagnosed with something and then go through a medical treatment process until you die. These are not options you can opt out of unless you go with suicide, and I can’t say that is very appealing either.

We can take some comfort that drugs today help ease pain, but at the end of the day (quite literally) coming to terms with suffering and death are facts. You can dodge bullets, maybe recover a few times, but eventually something is going to get you.

Now that idea might inspire you, as it has countless people, all people who of course eventually died too. We don’t have long, so let’s make the most of it. Let’s make sure our life is amazing so we can die knowing we gave it our all.

I can’t say I’ve had that reaction to the prospect of suffering and death, at least not all the time. Many times this year I’ve been extremely frustrated and despondent. I want to know what’s the point of living when you die and suffer so much. It’s like you get the chance to experience so many emotions and experiences, to convince yourself to strive to be the best person you can, to achieve things, to help others and then…it’s over. Or at least you die and something else happens.

It’s lead me to reach a point where I’m incredibly curious about what happens when you die. I need to know so I know what is the point of being alive. The problem is that I’m scared and depressed by the process we endure before we die. It makes me desire an unexpected death while sleeping pleasantly in my bed at 90 years old.

I’ve dealt with this challenge before of course, and question my existence and the whole system we operate within on a weekly basis, often reaching conclusions that aren’t complete. I choose to live in the moment and move on, accept circumstances and do the best with what you have.

I can say one thing – I’ve certainly become a lot less hung up on the little things since all this happened.

I’ve managed to suffer a lot of angst and depression in my life because I wasn’t happy with certain things. After seeing what other people go through, I’m pretty darn happy today just being able to walk and talk and eat and drink. Being in a state of basic good health is a blessing, something you have to treasure above all else.

I’ll end part one of this year in review article here. Clearly family events has dominated the year, but that doesn’t mean I wasn’t working on business projects too.

In my next article I’ll recap 2011 in regards to business undertakings, in particular some big changes I made to my overall business model and what 2012 will be about for my business. Stay tuned!

Yaro Starak
Healthy

P.S. Part two is now ready! – My Most Challenging Year Part 2: A New Business Is Born