A moment at a time

Diary extracts:

September 9th 1993

Migraine, chest pain, sickness. 4 lots co-codamol, 4 lots Ibuprofen, 3x Metoclopromide and 1x Zomig

24th March 2010

Woke at 4.50am! This is getting ridiculous. My right shoulder has joined the clamour of pain waking me each morning. Still it makes a change from the headache that usually pierces my slumber.

12th May 2019

Woken at 2.40am by pounding migraine. When will I learn to pace myself better. I had been to a two hour get together the night before, really enjoyable, but beyond my capacity.

******

Normality?

At a recent consultant’s visit, he asked me:

‘Can you remember being normal?’

‘Yes!’ I replied aghast.

I wasn’t aware that illness made me abnormal. In fact my memory of normality, if that is what it was, is painful in many ways…

There was an incident that still shames me to this day. A friend of my wife Mary was visiting us with her little boy. It was early in our married life, before we had children. The little boy had a long term, but not life threatening, illness. I was very intolerant of illness. We were having a cup of tea and the little boy, who was about five years old, was sitting and playing quietly with some Lego blocks on the floor. His mother was chronicling to us details of her son’s illness, and the many doctors he had seen.

As a trained medical expert with zero years of aesculapian training and no experience in healing, I sat and observed this seriously ill child. Watching him playing quietly for ten minutes, I could of course make a complete medical assessment of him.

‘He doesn’t look ill.’ I stated.

His mother was taken aback and responded sharply.

‘He does have a few good times.’

‘But he’s playing quite happily now. You said he’s always ill.’

‘He is ill! Playing for a couple of minutes doesn’t change that.’

‘Oh… I see.’ I said with deep meaning.

I chalked that up as a point won as I watched his mother squirm. Mary looked crossly at me as if I had done something wrong.

‘Mike, why don’t you go and get the cakes.’

So I walked out victoriously, while Mary tried to console her friend. I had proved my point to my satisfaction. The mother stopped talking about her ill son.

It wasn’t until I became chronically ill years later, and started to suffer a similar disbelief from others; that I realised how badly I had acted. I have often wished I could see her again and apologize, but we’ve lost contact.

An illness that is not visible to a casual observer is a curse twice over, once because of the illness itself and then because of misunderstanding and disbelief. People are not deliberately cruel; they are merely ignorant, as I was with Mary’s friend. Ignorance leads us to think we know best or to judge without understanding.

******

Conversation:

Terry is someone who is happiest in a throng of people. At six foot with rugged features, and a confident manner he has always been attractive to women. He was unhappily married once some years back. As a very loving father of an only son he has spent most of the six years since looking after him, with his ex-wife taking the weekend shift.

Terry has recently set up a company to run from home. One thing about Terry that has always struck me as odd, is that he is the most laid back ‘workaholic’ I know. I have known him since school and I have never seen him as being in danger of ‘overdoing it’. Yet somehow in his relaxed and laid back manner, while seeming to do very little, he gets a lot done. He is a conundrum to me.

One day we were sitting in his spacious lounge, Terry was stretched back as usual on his huge red sofa.

‘I’m never ill, I don’t have time.’ stated Terry, while answering a text on his phone.

‘You don’t just get ill when you have the time.’ I replied in surprise.

‘My approach is positive thinking, I don’t let illness stop me, and I just keep going.’ Terry finished his text as he spoke, and then looked up at me.

I took hold of my increasing annoyance at Terry’s lack of understanding and replied:

‘I think you’ve been very lucky not to have any serious illness that would prevent you working.’

‘Oh, I’ve had loads of illnesses I just ignore them.’

‘Right – Let’s look at something well known like flu. They say the definition of flu is this: “When you’re too ill to get out of bed to pick up a £10 note off your windowsill.” So when did you last have flu?’

‘When I have flu, I just carry on working.’

I took a deep breath to remain calm.

‘In that case you are talking about a bad cold not flu. The reason for the definition is so that you can understand the difference.’

‘When I’m very ill it just doesn’t stop me working. I have a strong constitution.’

‘Terry, I used to think like that. I worked on through bad colds, migraines and I even drove 300 miles with pleurisy, for goodness sake. In fact they reckon it’s because I carried on working through illness that I am so ill now. There are some things your body will not let you ignore… it just stops!’

‘Well I can’t afford to be ill; I have far too many commitments.’

We were saved from further argument by Linda and the children returning from a walk.

******

Memory:

I see my life stretched behind me like the contents of a roof rack shed upon the road by a speeding car. I can see it arrayed messily behind me on the tarmac of life. Some memories piled up others spread out; some appear damaged parts missing, others almost complete. There in amidst a great jumble I see one particular memory. I had forgotten it, packed it away.

It is the early 1990’s and I have been ill for over a year, but off work just six months. One of our son’s is having a birthday today. We are celebrating his Birthday, and I am hiding how ill I feel. As we start eating his Birthday Cake there is a knock at the door. Mary answers it and finds my boss standing there. She invites him in:

‘Come in Martin, it’s our son’s Birthday, we’re having a party. Do you want a cup of tea…piece of Birthday cake?’

‘Umm… no… sorry… I hadn’t meant to… intrude. I.. just wanted a word with… Mike. Urr… Happy Birthday.’ Martin faltered.

‘What was it you wanted?’ I asked.

I was sitting at the table with our children surrounding me, chocolate cake smearing their faces and hands. They were very excited to meet my boss. Our son assumed that he must have come especially to say Happy Birthday.

‘Can we talk privately?’ Martin asked, regaining his confidence.

I walked hesitantly into the hallway, but the children were so excited they followed me.

‘Wait there children, I’ll be back in a mo.’ I was feeling a sense of foreboding.

Once we were alone with the door shut Martin began.

‘Umm… when you came to the office today to hand in your doctor’s report, you should have been given this.’

He handed me an envelope.

‘What is it?’

‘It’s a notice to terminate your employment, with one month notice, effective today.’ Martin stared at the floor while he spoke.

I had never been fired before and certainly not for being ill. So I just stood staring at him for a moment before saying:

‘Why?’

‘Because you are not able to carry on your job due to illness. I’m sorry.’

He then left without saying goodbye to Mary. I slumped onto the stairs and stared at the letter. Mary heard the front door close and came into the hall. The children bounded out behind her.

‘Daddy ready now?’ our son shouted.

I just looked blankly at him.

‘Are you OK? You look shaken.’ Mary asked gently.

I was trying to control my emotions but Mary’s gentleness released my pent up sadness. We have always believed in being honest with our children about feelings, as long as they also saw how things were resolved. I would not have chosen to be upset on our son’s Birthday, but the pain had to be dealt with, so I cried and we all hugged and talked. After we had expressed our sadness we finished eating the Birthday cake and watched a family film. It was not the way I would have chosen our son’s Birthday to be and I felt bitterness towards Martin. But he did not know how bad his timing was.

******

Reflections:

My profound relief is that illness comes a moment at a time. Had I known back in 1993 that I would still be ill in 2019 I don’t think I could have coped with that. It is easier to cope day by day rather than looking many years into the future. That way there is always hope and there are always fresh challenges.