Looking Over The Edge – Compassion

I had my first child when I was 29. A beautiful baby boy. As he grew into a toddler he was as rough and tough as any boy. He played with boys toys and when he fell down a flight of three stairs he stood himself back up, shook himself, and went back to playing without as much as a whimper. He’s such a little boy, I thought. He’s going to grow up to be tough. He was fit too, at the age of 2 he ran non-stop with me for over 2 kilometres.

Then at about 3-4 he started being more and more feminine so I ended up with a son that was more of a daughter. Although I was disappointed he wasn’t more masculine I didn’t love him any less. And he was such a sweet boy. Always so well behaved, great sense of humour, and a delight to have around. When his younger sisters were born he was so nice and caring. The teachers always raved about what a pleasure he was to have in their class, and he always seemed to be very popular.

When he was 11 I noticed he was following gay youtubers and had some books by gay authors. That confirms it. I thought. He’s a poof. He sent me a text not long after. “Dad. I like boys.”

I replied “I know. I love you Tommy.”

I was happy that he was able to be honest about his sexual preferences so young. As he got a bit older and started to develop his own identity, I didn’t know what guidance I could give a gay man, so I left him to his own devices and just tried to instil some of the values I had learned for myself by example rather than instruction.

To be honest I was a bit disappointed he was gay. Not because I hate gays, but because I have so little in common with them. He was my only son. I had hopes and aspirations of being able to teach my son the ways of manhood. All the lessons I didn’t have a father for and had to teach myself. What use would I be to a gay guy? I didn’t want to do more harm than good and hinder his journey so I sort of left him to work things out himself. He had done so well so far I really thought I had done my job by giving him a strong male role model for his early years.

Then about a year ago I started another very niche ecommerce business. I didn’t want to pack the orders myself and then I came up with the idea that there was one thing I could teach Tommy, and that was business. He was not entrepreneurial like I was as a kid, but he was more conservative and consistent. He would make a great employee, even business partner. I could teach him.

I told him about my plans and I would give him a percentage of sales. He seemed a bit hesitant although keen to earn some money. I said it was part of his education and he agreed; although I didn’t really give him the option of saying no. I bought our first purchase order and got to work to make an ecommerce business that a 12-year-old could run. In doing this I discovered there was no reason my other businesses couldn’t be simplified so it was a good process for me too.

Tommy did a really good job. He handled all order processing, shipping and customer correspondence via email. He was consistent and reliable, and I was very proud. The business did better than expected and before long we were doing $3000 a month in sales. I had another business doing about the same turnover and asked if he wanted to handle packing those orders too, which he readily agreed to. His bank account was looking healthy and he bought himself a brand new Iphone. He was a proud employee and business owner.

Over the last year I had a couple occasions where his mum went on holiday and I came and stayed with him and his younger sisters. It was like living with a girl – a very obedient and well behaved girl. He looked after his sisters, doing their hair and packing their school lunch, and he cleaned the house up after us without any complaints. “You’ll make a good wife one-day Tommy.”  I teased. He straightened his back with a big proud smile and said. “My mum taught me everything I know.” The little poof was as proud as punch by my derogatory tease. He really took it as a compliment.

The odd thing was I quite liked building a relationship with a gay pre-teen and was almost proud that he had such a strong identity and didn’t give a fuck. He was who he was and was going to make the most of it. He went to a state high school in regional Queensland that was known to be a pretty tough school. We kept an eye open as we thought bullying would be inevitable, it certainly would at my high school, probably by me and my friends if any peers openly identified as gay at that age. But there was not a single incident that we were aware of. Oh how the world has changed..

He seemed to have lots of friends, mostly girls, but some guys too. To my knowledge he had never had a boyfriend, but I did see a host of other gay kids on his Instagram and snap chat. Like him, they were into makeup and would do themselves up and take selfies. At that age I was kicking the footy, skating, and trying to finger girls.

In July this year Tommy was on top of the world. Good student, popular with his peers, and  a nice little income from the business we built together. At the end of August I got back from a fantastic month in Thailand and Indonesia that wrapped up the best year of my life. The two years before that were good, but challenging. I made a commitment to being single and struggled for a while with the ups and downs of single life. Being back in the dating market as a pretty naïve 40-year-old was humbling. Some might call it a mid-life crisis. Anyway this year I reaped the benefits of that – financially independent travelling the world with the ability to meet and seduce hot young women.

I came back to Australia in August to look after Tommy and his 7-year old sister while their mum went on holiday for 2 weeks with our 10-year-old daughter. While I was away their mum mentioned that Tommy had been mumbling. I didn’t take much notice of her, but when I saw it for myself it was very noticeable. I took him to the GP and they thought the mumbling was caused by excess saliva. They refereed us to a dentist – maybe a cavity.

Tommy rang me from school about 10:30am the next day crying and said he wanted me to pick him up. He had always loved school. When I picked him up he said that one of the other students had yelled at him in frustration because she couldn’t understand what he was saying.

I realised how hard this would be for a 13-year-old. I said that he didn’t have to go back to school until we had fixed his speech. I’m really not a fan of school (statist, feminist indoctrination, daycare centres) and don’t have any problems with the kids missing school. I explained that he could work with me and I would teach him other things that would help him manage his emotions like yoga and meditation. Although I was pretty sure he had a physical problem I suspected there was an emotional element. He had changed somewhat. Maybe the mumbling had affected his confidence. He had never had to deal with any adversity before. While I didn’t think I had much to offer him only a year earlier, except maybe some business skills, overcoming adversity was my specialty. I felt honoured to have the opportunity to help him.

A family friend suggested it might be Bell’s Palsy. He had a lot of the symptoms and we were relieved that it was treatable. I didn’t want to go back to another random GP so I made an appointment with his mum’s regular GP, but I couldn’t get an appointment for a week. Over the next week he worked really hard on whatever tasks I gave him. He tried yoga, meditation, we went bush walking together. He took on all the domestic duties of cleaning the house, but he continued to deteriorate. His personality had changed. He was certainly pleasant, but he was over compliant and lacking his usual confidence. His mumbling got worse and he was now drooling. I wasn’t sure what was emotional and what was physical. I didn’t know what to do but wait for our appointment with the doctor.

A couple evenings during this period I shocked myself by crying. I rarely cry. I cried in 2008 when I was 7 years clean and felt real love for myself for the first time. I had done the 12 steps every year for the previous 7 years. And then a few years later I cried after a period of a few months of depression. I realised the depression was repressed sadness and the tears flowed taking the depression away with them. But now in 2018 this was a new compassion I had not tapped into. This was crying for someone else.

I was in bed all on my own and really let myself wail. My son was very sick and getting worse. My son that I loved very dearly. I screamed into the pillow. I loved him and his life had just been turned upside down. He no longer had any friends. He no longer had himself, at least the self that he knew. I screamed into my pillow, my tears wetting the sheet. All that mattered was him. I wanted him to be ok, but more importantly I wanted him to feel loved and protected. Regardless of what happened with his health I would be there for him. I was surprised by a level of compassion I had never felt before.

We finally got to see the doctor and she noticed a throat infection so sent him home with antibiotics and a referral for an ultrasound on his neck. That was Tuesday and I made another appointment for Friday. He continued to get worse and I noticed one night his hand was shaking. He was also taking twice as long to pack his orders for our business. He would seem to get stuck in thought. He was also making involuntary moaning noises whenever he was stressed. I first noticed him doing this a few weeks earlier and that’s when I suggested yoga. I thought he was in emotional stress and it was coming out verbally. I explained that there was a time and a place to exercise that stress and yoga was good for that. When I am stressed I like to make a lot of noise when I do yoga. The moaning got worse and as well as giving me the shits I also thought that it was really going to socially ostracise him. I told him he had to stop doing it. That’s when I realised he really couldn’t stop.

I took him back to the doctor on Friday and she said there was something seriously wrong. Tommy said he wasn’t getting head-aches so that ruled out a tumour, but maybe he had a cyst on the brain. She requested an MRI and sent us to the Sunshine Coast Hospital Emergency. He got his MRI and they noticed inflammation on the brain around the basal ganglia area, but they had no idea why. They gave him a room and a couple days later transported him to Brisbane Children’s hospital. That was on Sun the 16^th September.

I went to the Children’s hospital in Southbank with him and helped him settle into his room. I had to work the next morning so left that night and went to my place in Redcliffe 45 minutes away. I couldn’t sleep. My poor baby was on his own in a hospital room getting worse every day, knowing there was something wrong with his brain, but not yet sure what. The following morning I closed my businesses, packed my suitcase, and moved into his hospital room with him.

A week later he was diagnosed with a rare disease that is treatable. We were told the prognosis was good and that he might even make a full recovery. With the diagnosis I was hesitant to start celebrating and was not pleased they moved him from the neural ward to rehab. I felt like they were counting their chickens before they were hatched and washing their hands of him. A week later Tommy was barely recognizable. He was under 50kg, being 60+ only a month earlier. He was 90% paralyzed, mostly in the upper body. He could no longer talk or eat. Then he started developing constant pain with muscle cramps and spasms.

His mum, older half-sister, and myself stayed with him around the clock. We massaged him, took him to the toilet, put a moist dental sponge on his lips and tongue and just try and minimize his discomfort. We sometimes got a 30-60 minute nap when he eventually passed out.

The pain is caused by dystonia, his muscles not turning off. They put him on high doses of diazepam and oxycodone. This took away most of the pain, but turned him into a zombie. And often they wouldn’t keep the pain away before his next dose was due. He would ask for more pills and I would have to explain that he needed to wait, which he understood, but he cried. His mind seemed to be ok and the doctors said he was unlikely to die and expected to make some improvement over many months. How much improvement they couldn’t say. He may never be able to walk, talk or eat again. He may never be able to go to the toilet or shower on his own again. His limbs are likely to deform from the dystonia. I was scared for him how much of his old life he would lose.

I felt like the boy I saw take his first steps, I just saw take his last. The words he first spoke 13 years ago he uttered for the last time. That sweet little boy who everyone loved. With the pain and discomfort he has been in I’m sure he wishes he had died many times over. The Tommy we know, the Tommy that Tommy knew, is no longer. His dreams and gaols smashed. His expectations of a normal life, partner, career, hobbies, gone.

People already, including some of the doctors, treat him differently. And they always ask him how he is. He can’t fucking answer. He’s shit. Look at him, he can’t fucking move and is in constant pain. How do you think he is? One doctor was yelling these inane questions at him like because he can’t talk he must also be deaf. I said as calmly as I could. “Please lower your voice. There is nothing wrong with his hearing and he is sensitive to loud noise.”

I talk to him and try and tell him the truth, but even I fail at that. I don’t let him see me cry. I tell him the doctors still say he will get better, which they have changed their wording now from “recover” to “show some improvement”. He’s still pretty out of it on pain killers. I think they must give him emotional relief too. I’m sure he struggles to believe he will get any better.

His pain continues to get worse as he builds a tolerance to the pain killers. I told the pain management doctors to put the dosage up and they said they would look at it but they were concerned that they were already at higher doses than they had experienced with any other kids. It is truly horrific that he is so high and still awake and in so much pain.

They trialled a Baclofen injection in his spine that reduced his discomfort considerably. The idea is that a spinal injection is 100 times more effective than oral. They just can’t give him enough orally without risks. Since the spinal injection was considered a success they put a stainless steel box in his stomach that has a tube running through him that will drip the drug into the top of his spine. I explained this to him and he wants it. I wanted him out of discomfort too, but it made me so sad that they had to resort to these drastic measures just to reduce the symptoms. There still seems little hope for any improvement in what is causing the problem.

He got a urinary infection due to the catheter from his pee bag. It gave him a temperature and he was asleep for the best part of 48 hours. To be honest it was the most peaceful I have seen him. But it delayed the Baclofen pump so his pain was sky high again while they worked to increase the dosage in line with his tolerance increasing. His movement was so diminished he could no longer communicate his pain, but I knew it is worse because he could still cry a little. He shakes in pain and his upper lip sweats in an aircon room even when his fever is gone.

I tried and stay positive. The temptation is to pat his head and tell him that everything will be alright, but I can’t bring myself to treat him with such disrespect. If all he has left is a brain I feel I have to honour that with the truth. If he does survive and has some semblance of a life I want to be the one that he can trust. He is not a baby. He is almost a grown man. And he has experienced more pain and suffering than anyone I know. I feel that has to be worth something. A few weeks ago when I was moving his neck from side to side to relieve his pain my hand would go on his throat. I could squeeze. I could squeeze the life out of him. I could take away his pain. I could do for him what no one else would be prepared to. But is it just my pain I wanted to relieve. Does he even want to die? I haven’t got the courage to ask him.

He has been through too much. To die now seems to be too be a waste of the last month of torture. Maybe it’s the sunk cost fallacy, but I want to believe there is purpose. I was racking my brain for visualisations and meditations for him to both relieve his pain and make him better, but I was stumped at how he was going to achieve anything in meditation with such overwhelming pain. The physio’s have tried to give him breathing exercises and tell him to talk to his muscles which I thought was an ok idea, but lacked something I couldn’t put my finger on.

It then came to me one day when he was in severe pain. The human response to crying and moaning is to shut it up. People, including myself, don’t want to hear it. Whenever he cries out in pain his visitors rush to him to massage him, find out where the pain is, and make it stop. I am not saying this is in any way ill-meaning, but the reality is they also have the human instinct to not want to hear his cries of pain and they want him to shut the fuck up.

I thought there was something in this and being an ornery sort of guy I thought I would practice the opposite. I explained to him that the pain was his bodies way of healing and that when he was in pain this was his opportunity to help himself. That it was his job to breath out the disease with his cries of pain and encouraged him to be louder. I told one of the doctors this technique and he encouraged me. He also said that recovery would come from building new pathways and any visualisations I could do on that would help.

This gave me a bit of a mission so I created some visualisations for him that I now read to him regularly:

I have an awesome life. I have heaps of friends. I enjoy school. I have my own business and work hard. I like spending more than saving. I enjoy long distance running and like having strong legs. I like acting and performing on stage.

Now I can’t talk, walk, eat or even open my eyes. The doctors said they would get me better, but I only got worse. I have to take responsibility for my own recovery. My brain still works perfectly so I am going to use that to get me better. I am going to do this by two ways:

I am going to remove the copper from my brain. Every time I breath out I can see and feel the copper coming out in tiny particles. A stream of yellows and oranges disperse from my breath as I breath out. The pain I feel is my body’s way of removing the copper. When I am in pain I know this is the copper leaving me. My job is to breath the copper out. The more noise I make and the more I cry the more copper comes out. Please encourage me to moan, scream and cry. Ask me to be louder. Help me remove the copper. Help me remember when I am in pain that this is my job to remove the copper with my breath and my moans.

As well as removing the copper I need to re-wire my brain so that the parts that I have never used take over the parts that are not working. I have never used most of my brain. I have 85% unused brain. These are like spare parts. They are asleep and it is my job to wake them and let them know I need them now. I imagine my unused brain cells waking up, rubbing their eyes, and having a big stretch. It’s now time for them to get to work. They are working on me now. They are learning how to make me talk, walk, eat and open my eyes. Help me remember to focus on my brain re-wiring itself. Remind me that this is my job to re-wire my brain so I can talk, walk, eat and open my eyes.

Later I went through some questions asking him what thing he would most like to do again. He squeezed my hand hard when I said go for a run so I created this one:

I like to visualise some things I will do when I remove the copper and re-wire my brain. Help me please.

I can feel my body lying on the bed. I can feel how my legs are touching the sheets. I can feel my arms by my side. I can feel my head resting. I can feel one hand is slightly warmer than the other. My eyes are closed but I can see the light in the room.

I can imagine how I will be when my new brain cells start working again. I want to run again. I imagine getting ready for my run. Putting on my running shorts, stretching, drinking lots of water, putting on my shoes and heading down the front steps from my house in Amamoor. I start my run slowly to warm up. I cross the bridge and head up the gentle incline as I run towards Harrys’s Creek Road. I am starting to feel good now. My legs feel strong. I look down at them. The are strong and toned and remind me of a tiger. I love my strong legs. As I run they feel like metal springs propelling me forward.

I continue to run and feel the cool morning country air coming in my lungs. It fills me with oxygen and my body converts that to fuel. When I breath out I breath out the copper and other toxins I don’t want. My body is strong I can run all day. I am looking forward to getting home so I can make my big runners breakfast of eggs and bacon, or maybe my mum will have made me her delicious pancakes for me.

I read these to him and ask “Can you do this Tommy?”

His arm trembles and with great effort as he moves his hand about half a centimetre to show me that he takes the challenge.

“The doctors have their job. They will give you the medicine they think best and try and help you with their pain. They wake up in their homes, get dressed, and come to work and try and help you, but they can only do so much. You have a job too. Your job is to visualise the copper coming out and waking up your unused brain cells.”

His hand trembles again trying to communicate.

“Your brain is more powerful than any medicine. The harder you work the more chance you will have of getting better.”

I start to wonder is he just being a good boy. Does he just want his father’s approval? He’s so powerless, so dependent on me and others.

“Tommy. I know you’re a good boy.”

He lifts his hand a little, but without the same effort as before.

“I know you want to make your Dad happy, but this is not for me. This is entirely for you. You have to be selfish. You have to want to get better because you want a life back. I know there have been times you want to die.”

He raises his hand.

“Times you want to give up. That’s ok. Maybe everyday you want to die and give up.

He raises his hand.

“And then you wake up and want to live. You do your visualisation. You work hard and then you want to die and give up again. That’s ok.”

My eyes start to tear and my throat hurts, but I have to say these things to him. I am the only one with enough courage. He wants understanding and empathy not platitudes and lies.

“Tommy. I don’t know why this is happening to you. I don’t know why you are in so much pain you want to die. And because you can’t move the option of killing yourself has been removed.”

He raises his hand. That is as close to asking if he wants to die as I can get.

I watch Youtube while he is sleeping and I get a suggestion of a documentary about Acquired Savant Syndrome. It is people that have had a brain injury and end up becoming really gifted in some area like mathematics or art. It fascinates me and I see some potential for Tommy.

“All I can guess is you have been chosen.”

We used to watch The Mighty Boosh together so I sing “You are the chosen one” a scene from one of the episodes, but I can’t raise a smile from him. I haven’t seen him smile in days. I don’t think he can anymore.

“You are a caterpillar.” This is also a reference from a self-hypnosis guided meditation we have both been listening to.

“The caterpillar goes in the cocoon. It is dark and scary and he can’t move. The process of transformation is painful. His body feels like it is breaking and he’s scared what he will turn into. All he knows is he won’t be a caterpillar any more. He will be different and he will special. Your brain is reforming. Imagine a werewolf transforming – bones breaking. You are changing into something special.”

“After your metamorphosis you will have a skill that you will be the best in the world at. You don’t know what it is yet, but out of the 7 billion people on earth you will be the best at it. You are a hard worker and you like to have purpose in life. You are going to be completely obsessed with this new skill and it is going to give your life purpose and meaning. Through your new talent you are going to have an amazing life and going to be able to touch the hearts of so many people.”

I take a few days off from the hospital while his mum stays with him. He is asleep when I arrive, but wakes up soon after. I open his eyes so he can see me. His eyes move to the side not looking at me. I let go of his lids and he cries. It is not a painful cry.

“You sad because you couldn’t move your eyes to see me?”

He let’s out a moan to say yes.

“I know how sad it is. You’re sad you can’t look at your handsome daddy.” I jest.

“I know how sad that must be. Let’s cry together.”

He continues to weep and I hold his hand. My voice is sad and teary, but I can’t bring myself to cry in front of him. I feel like if I cry he will realise how bad the situation is and will lose hope all together. I don’t really believe that. But that’s what my heart tells me. Maybe he would like to hear me cry.

“I want you to be able to look at me again too.” I say as I rest my head on his chest and place his hand on my head and rub my hair with it.

I want so much for him to walk again. I want him to be able to have a life with some meaning and joy. I never used to take much notice disabled people. I see them all the time down by the beach with carers. They sit in a group at the beach with their carers’ and their bus close by. They stare off into space. Their lives look so meaningless to me.

They were something I avoided looking at to not be impolite, but the truth was I didn’t want to empathise with them. I didn’t want to know or understand their struggle. I like survival of the fittest evolutionary theory and thought that our society had it so easy that they could afford to be compassionate to these people that could not fend for themselves. These individuals that in tougher times would be the first to be sacrificed. In times of war or natural disaster, if the ship was sinking they would be left behind. They were not needed, they can’t contribute. When shit comes to shovel healthy loved ones that can contribute and provide you with grand-children and perhaps even care for you in old age will be the ones saved.

A couple of weeks ago I was making coffee in the family room. This grossly overweight women in her thirties was spreading a thick layer of Lurpak butter on her toast. “I see you like the good stuff.” I say making uncharacteristic idle chit chat.

“Oh yes. There is no point skimping on the essentials.” She replies.

We start talking about our kids and her daughter is now 10 and has spent most of the last 7 years in this hospital. I can’t remember the condition, but she has fits and is mostly paralysed. She is not expected to get any better, it’s just a matter of keeping her alive.

“They said she was unlikely to survive, but here we are 7 years later. We count every day we have with her as a blessing.”

I nod, finish making my coffee, and walk away wondering. What part of her life could possibly be considered a blessing? Does that kid even want to be alive?

And now here I am looking at my son who has been paralysed with no improvement for the last month. I don’t want that for him. Meaningless is worse than death. If he is alive and in the same condition in 7 years, I will not be grateful for his life. I want to do everything in my power to give him a chance. I don’t care if I hurt his feelings. I don’t care if I make him sad. I don’t even care if I make his pain worse. Well I do care, but it’s worth it.

“Tommy.” I stay sternly. “Do you want to get better?”

He moans louder

“Your friends at school are walking around, talking to each other, laughing. They have forgotten you already.”

He cries.

“That makes you sad.”

He cries.

“It should make you sad. It should make you the saddest person on earth. And it should make you angry. Are you angry? Show me your angry”

He squeezes my hand.

“Show me you want to get well.” He grips my hand tighter as he moans in pain.

“There is a seat for you at your mum’s kitchen table. Remember your seat? Do you want to walk to that seat again unassisted? Do you want to eat with your family? Joke and laugh and tell stories of your day at school.”

He moans louder squeezing my hand.

“Want it. Want it more than anything. Use your sadness. Use your anger, your fear.”

I then explain to him why I want him sad and angry and how these powerful emotions will give him the drive he needs to help his brain. He understands. I rub his chest and put on a meditation audio for him.