He squinted his left eye when he spoke. It was a look that one might make if they were feeling skeptical. Phil never made that face though. It wasn’t him. Oh dear, a new symptom.
It was only last month when he did the jaw thing. We had finished lunch and as we walked back to my car, he wouldn’t stop moving his jaw as if he was trying to dislodge something.
‘Phil, what’s wrong? Why are you moving your jaw so much?’
‘It’s the side effect from my Parkinson’s medication. It happens once you’ve been on the meds for a few years.’
‘Oh. I see.’
It’s been ten years since his diagnosis and I still hadn’t quite learned what to say to him when it came to the disease. What was there to say when we both knew that Parkinson’s Disease was degenerative; there was no cure; medications could mask the symptoms but neither drugs nor surgeries could stop the slide. There was nothing that I could say that would make any of it go away. Why ruin the present moment as the next moment would not be as good as this one.
Let sleeping dogs lie. Let it go.
Easier said than done. The evening that he told me about his diagnosis played over in my mind. Yes, again. The memory was on auto-playback each time I saw him struggle with something. Putting on a coat, picking up a piece of sushi or getting into a car.
It was a cool night. He dropped me off at home after our dinner. We were in a small friendship group that were mad about bridge. Members in the group drifted in and out as their life circumstances changed. Having kids usually put a pause on hobbies. Phil and I were the constant ones. We showed up at the club, come rain, hail or shine.
He pulled into the undercover car park of my apartment, as he had done many times before. The red lights from his car’s dashboard gauges glowed warmly against the harsh fluorescent lighting above. He stopped the car and left the engine running. My face and hands were cold from the rush of cold air blowing out of the air conditioner. Like many big guys, Phil was impervious to the cold. He had his car air con on full blast all year round. I was eager to get out of the freezing car.
As I was about to step out, he blurted. ‘Laura, the results came back. I have Parkinson’s Disease”.
Then he just sobbed. I put my arm around him and rubbed his back. It was the first time that we both softened to each other. Despite our long time friendship, there was often a tension between us. We were too similar. We shared the same hobby and we also shared the same weaknesses. He reminded me of my own shittiness. We would kill each other as a couple but we could safely remain friends. Happily so.
I reacted to his distress by jumping into my cheerful and optimistic mode. As an event organiser, one of my biggest client was a high tech medical company. They had some innovative and seriously mind boggling products. One of them was called deep brain stimulation. It was a relatively new treatment for Parkinson’s Disease back then, and few people had heard of it. Armed with that knowledge, I reassured him that medical science and technology were very advanced. He didn’t need to worry. My enthusiasm was boundless. I wanted to explain to him how the technology worked. Thank goodness I had just enough sense to stop myself.
Telling Phil how a hole could be drilled through his skull where an electrode sent small electrical pulses into the sub thalamic nucleus region deep inside his brain to pacify the misfiring neurons would not be helpful. He was already scared. He didn’t need more scaring.
Perhaps I was scared myself. I wanted a solution immediately and for the pesky problem to go away. I didn’t know how to grieve with him. I only knew how to be a cheerleader.
‘The life expectancy of people with Parkinson’s disease is not good. Maybe ten to fifteen years,’ Phil spoke softly and fearfully.
‘Michael J Fox has had the disease for a much longer time than that. Much, much longer. He is still alive and well.’ I softened my own voice to match his.
‘He is alive but I don’t think that he is that well.’ Phil frowned.
Of course, Phil had already googled. Always one step ahead of me.
‘Don’t worry Phil, medical technology is advancing in leaps and bounds every single day. You’ll be fine.’ I double downed on my cheerleading regime.
It turned out that I knew very little about the science and the disease. I would get my education through Phil’s lived experience.
The next time we met, he told me that he would be fine in the first few years but things would start to bite after year five. I assumed that was what his doctor told him. On reflection, he probably just read something on the internet because that turned out to be a throwaway line. What did one mean by “fine” and “bite”? The devils were in the details.
After another meal together, Phil rubbed his hamstring after standing up from his chair.
‘Ah, they are stiff,’ he mumbled.
‘What did you do? Did you go for a long walk or something?’ I asked.
‘No, my muscles just tighten up like that. They are so tight that they can cramp up, ouch.’
He eased himself out of the table gingerly like an injured person. I started to feel sorry for him. He was experiencing a pain that I could actually understand. I knew what hamstring pain felt like after a hard work out. I knew what a cramp felt like and they hurt. He had to feel them without any of the benefits however.
‘I’m sorry that you are in pain, Phil.’
‘My muscles will relax again once I take my medicines. What bothers me more is my sleep. I can’t sleep very well. I’m awake for most of the night and I am feeling very tired. I think I may need to take some sleeping pills.’
‘Do you have any?’
‘Yes, I do. My doctor has prescribed some for me. He said I might need them. But I have been putting off taking them.’
‘Why?’
‘It’s very easy to get addicted to them.’
‘But sleep is really important too.’
‘I know. That’s why I’m struggling.’
I wanted to tell him to take the sleeping pill. It was the lesser evil. But what if he became dependent on it? What was the lesser evil then? I agonised over it myself. In the end, I didn’t make a suggestion because I didn’t want to be responsible for his addiction. I felt and was utterly useless.
He took the sleeping pills.
His medications did a good job with the tremors though. You couldn’t tell that he had any. But then he had all these other things too. For example, his urgency to pee. A look of panic would spread on his face with so much intensity that he looked like he was trying to suppress a scream.
‘I need to find a toilet,’ he gasped.
‘Oh, oh. toilet. There! It’s over there. Go! Go!’ His sense of urgency made me panic too.
Then the hallucinations.
‘I think I have an ants problem at home. I saw a row of ants crawling through my carpet in my bedroom. When I called pest control to come out, they told me that there were no ants in my apartment. I can’t understand how they could miss them,’ Phil complained over dinner.
‘You have ants? You live on the top floor of a high rise building. How do ants get up that high?’
‘I see them all the time. As a matter of fact, I see them on the wall behind you. Can you see?’
I turned around and saw nothing.
‘I can actually feel them crawling up the back of my neck,’ Phil flicked his hands behind his head to try to brush them off.
‘Phil, there are no ants on you. I can assure you of that. I can’t see any.’
I quickly changed the topic. I didn’t want him to focus on it. Where attention went, energy followed. It was better to distract him.
Perhaps I didn’t need to worry about him putting too much attention on one thing. His attention span had become so short that at one stage, I got really mad at him and didn’t want to talk to him anymore.
When he wanted to tell me things, I would listen patiently until he finished. However, when I wanted to tell him something that would take more than a few sentences, his eyes would glaze over. I looked closely at his eyes and they looked like he was suddenly overcome with tiredness and he was struggling to stay awake. I used to get very annoyed with him. But I subsequently learned to summarise first and then spoke in fewer sentences.
Phil became more settled once his doctor was able to give him better dosing and switching to medicines that were more agreeable with him. He was also kept busy with a large schedule of exercise classes and activities. I called them activities but they were mostly medical appointments. He had regular appointments with his GP, neurologist, urologist, gastroenterologist, cardiologist as well as psychiatrist. Then there were also the appointments with his allied health professionals such as his dietician, physiotherapist, trainers.
With so many specialists involved, a new problem emerged.
‘The pill that my cardiologist gave me interfered with the medication that my neurologist gave me. My neurologist asked me to ask my cardiologist to use a different medicine. But my cardiologist felt that it was really important for me to stay on it. They finally agreed to have a direct conversation with each other. It’s getting too confusing for me.’ Phil shook his head as he explained to me.
Of all that he had said, his last sentence alarmed me. Despite everything that had been thrown at him, he had never given out any signs that he wasn’t coping. Was he surrendering? I felt a sense of dread initially. But something else showed up. Something unexpectedly nice.
Phil mellowed. He became easier to be with. He was friendlier, softer, more approachable and more likeable. He smiled more. In the early days, I sometimes felt sad, shameful or awkward after our meetings. Then it got easier and more enjoyable over time. In the last few months, meeting with Phil would easily be the most peaceful and relaxing activity of the day.
Lately though, his symptoms had crept into the mental side. His speech became more broken. His hallucinations grew. Humans had joined the insects. He regularly saw a woman sitting at his dining table, and a man also hung out in his living room. Phil was aware that they were hallucinations though.
‘Phil, that sounds a little creepy. Do they scare you?’
‘Ah, a little. It..it’s unsettling and uncomfortable.’
‘Want to hear something funny? There’s this guy who saw people in his hallucinations. So he got himself a dog and trained it to greet people on command. When he said “greet”, and if the dog didn’t move to greet the person, he knew that it was a hallucination.’
Phil laughed at the story and said it was clever. But it wasn’t so funny about the condition in real life.
‘Hmm…my bedroom gets er..stuffy when I have the door closed,’ he complained one time.
‘Why don’t you leave it open then?’ Since he lived by himself, I didn’t see why he had to close his bedroom door.
‘Well, hmm, I want to know if someone tries to enter my bedroom while I am sleeping.’
‘There’s no one in your apartment.’
‘Well, I want to know if the guy is coming into the bedroom.’
‘What, the man that you see in your living room?’
‘Yes.’
‘Would you prefer it if it was the woman?’
Phil didn’t find my comment funny.
‘No, I don’t like either of them.’
Not long after that, he told me about his plan to leave his apartment.
‘Hmm, I’m cleaning out my apartment. There’s so much stuff that I have to throw out. Box, boxes of them.’
‘Aren’t we all a glut for keeping things. All of us. Do you know that it can cost more to get rid of stuff than to purchase it in the first place?’
‘I am preparing to move out.’
‘Where are you moving to?’
‘A care home, like a nursing home.’
‘Oh, why? You seem fine. You have a cleaner and you buy all your meals as it is. You’re still driving during the day and you’re going to boxing classes. Isn’t it a bit too soon?’
‘I’m planning to move in six to twelve months’ time.’
‘That soon?’
‘I’ll see how I go but yes. That’s what I think.’
A couple of months later, Phil found a selection of nursing homes. He was explaining to me the types of accommodation available and their costs. I recommended that he took the most expensive one. He could well afford it. Since his income exceeded his expenses, he would literally die with more money than he had today. It would seem silly to not spend it on himself.
‘I, I don’t know. Let me think about it,’ Phil hesitated.
‘Is there something that you would rather spend the money on?’ I asked.
‘Maybe another trip?’
‘Then do it. And do it sooner rather than later.’
‘Hey, what do you mean by that?’
I was surprised but also delighted that he took offence to my perfectly logical reasoning. It was refreshing to see a bit of fight in him. He came alive when he was animated.
‘None of us is getting any younger. Things get harder to do as we get older.’ I thought I would be a team player by throwing myself under the bus as well.
‘Anyway, you will need to pick the nursing home that you like most first,’ I continued
‘Yes, they have a trial available. I can stay with them for a week to see if I like it or not.’
‘Oh good.’
I dreaded the thought of Phil staying in a nursing home. I had joined my friends when they visited their parents or grandparents. I had an idea of what nursing homes were like. Even the high end ones saddened me. The low end ones just made me cry. The disagreeableness wasn’t so much the place but the people in them. You might experience a pang in your heart when you see a decrepit person. However, to see a large group of them together was an entirely different experience. It was a shock to the system.
Phil was too young to be there. At his age, he should be going to work at the height of his career. I didn’t think that the environment would be healthy for him. But he was finding it difficult to cope by himself. He struggled to pay his bills on time. The routine tasks of checking and making payments took him forever. He could spend an inordinate amount of time on his “admin” work with little to show for. His cognitive impairment was raising its ugly head.
When he came back from his nursing home trial, he was troubled.
‘Laura, I didn’t like it there.’
‘What happened?’
‘We have to eat together and they have me seated with his guy who had the, the most atrocious table manners. He, he licks his knife at the end of each meal. It’s sickening.’
‘And they couldn’t move you to another table?’
‘No, er, it’s all setup and very difficult to change.’
‘As they say, you can’t choose your family and you can’t choose your neighbours.’
‘Hmm..my brother from the US called. He, hmm, he said that there was a new gene therapy available for advance PD. He wanted me to try it out.’
‘Oh wow, that’s wonderful news. You must. I second that.’ I was excited for him. Phil was young. There was still time and hope.
‘It’s very expensive however. We’re talking about hundreds of thousands of dollars a year.’
‘Ouch, but it will give you a new lease on life.’
‘Potentially. But even if, even if the treatment works, I worry that I wouldn’t have any money to live on after the treatment. This will use up all my finds. What do I do then?’
‘Phil, worry about it then. Once you have your health, you can figure things out. I think being broke but healthy is a better deal than being unwell with millions in the bank.’
‘I, I disagree. It’s possible that the treatment won’t work and I end up being sick and broke. It could be worse.’
‘Do you have to be such a catastrophic thinker? I’m pretty sure that the treatment would make an improvement to your quality of life. Even if it doesn’t completely cure you, it would offer you a better quality of life. ‘
‘And then what?’ He stared at me.
I didn’t know what to say to that. I needed time to think.
Was it the money? Perhaps I could reframe the situation for him. I wanted him to see that he was worth it.
‘Phil, what if this was your only child. If, your only child needed this medical treatment, would you give it to him?’
‘Of course I would.’
‘Then you should give it to yourself too.’ I made it more explicit in case it wasn’t obvious.
‘It’s not, not the same thing. I could look after a child but nobody would look after me once my funds were spent.’
I needed to try another tact.
‘Phil, do you know that if you don’t spend your own money, other people will?’
‘What do you mean?’
‘When you leave everything to your estate, this means that they will be end up being spent by your lawyer, accountant, family members and charities, assuming that’s where they are going to.’
‘What’s wrong with that?’
‘Are they more valuable than yourself?’
‘When I’m gone. I, hmm, don’t need it anymore. I’d be happy for them to have it.’
‘You’re willing to sacrifice your chance of much better health for their well-being?’
‘Maybe they could make a better life than I could. I had a good life. With my Parkinson’s, I learned to enjoy the smallest things. It’s not a bed of roses but I am willing to see it out. Anyway, I am tired and I don’t want to talk about it anymore. ‘
Our conversation ended. I felt defeated.
No, I felt ashamed. I was wrong about Phil all along. He was always so careful about everything not because he was choosing safety. He was actually being God damned considerate to other people. When he looked like he was guarding his money, he was saving them for others. We were not similar at all. Phil was a much better person.
