Skip to content
#Open journalism No news is bad news

Your contributions will help us continue to deliver the stories that are important to you

Support The Journal
Image: YouTube

'Focus on what you can do, not what you can't': Pat Caslin on living with a long-term illness

Caslin initially shared his experience of a living with MS for a powerful TEDx talk.
Dec 3rd 2019, 12:20 PM 20,958 5

Source: Aware/YouTube

AROUND 12 YEARS ago, Pat Caslin woke up with an odd sensation on his legs – it felt as if his skin had become too tight around his ankles, almost like they were wrapped in plastic cling film. 

He began to think something was going on with his spine, becoming worried that these odd sensations could be caused by a tumour there: “I thought my time was being called”, explains Pat. Soon after, a neurologist diagnosed it as transverse myelitis.

“I asked her to write it down – I had never heard of it”, says Pat. When he went home and looked it up, he realised that it would most likely turn into multiple sclerosis (MS), a progressive condition in the nervous system where messages between the brain and the rest of the body get disrupted.

When an MRI a few months later confirmed that he did indeed have MS, Pat didn’t react the way you might expect: “It was a shock but it was a relief – I didn’t have a tumour in my spine – it was a good day.”

Adjusting to the cycle of MS

At first, Pat’s MS was episodic – it would come and go, but every time it occurred or ‘relapsed’, it would leave a little residual damage. At first it was a slight weakness and foot drop in Pat’s left foot. Then he lost tone in his ankle and couldn’t lift it up: “I felt drunk – it was just dragging.”

But Pat realised he could clip his toe into the cleats in his bike and he wouldn’t have this issue: 

I got very fit. I would do up to 100km on the bike and some pretty high ascents. I often went to consultations in my cycling gear, which wouldn’t be a normal thing to see.

They were the early days – he kept up golf and cycling in and out of work everyday, but the MS was in the back of his mind all the time, although he and his wife didn’t tell people for five years or so. Around that time, he had to start using a buggy to play golf and stop cycling. His disease was entering into a progressive phase.

“That was very frightening, very preoccupying”, says Pat. He asked himself ‘how should I think about this’ and realised that he had a few choices – he could “fall into self-pity and victimhood”, or “become obsessed with overcoming it and get disappointed”. Instead, he realised he had to come to accept this was how his life was going to be.

This meant getting an extra hand rail on the stairs. It then eventually meant modifying the house so that Pat could live downstairs. Four years ago it meant that he had to start using a wheelchair, but as Pat explains in a TEDx Talk he gave, he wouldn’t swap with anyone:

I’ve been compensated generously in other ways – I’ve found a speaking voice I wouldn’t have found otherwise. I don’t look back at what I can’t do. There are a lot of things I can do, and I do what I can.

A life-changing conversation with a doctor

Around the time he got diagnosed, Pat flew to the US to a specialist to find out more. He asked him what was his prognosis. His response? “You have a progressive form of MS, and progressive diseases often progress.” Initially, he felt frustrated he had spent so much money to find this out, but what he realised afterwards was a game-changer:

Prognosis can be a tyranny – if someone you really respect at the top of their league says your disease will go this way, that will be your outcome – your subconscious will satisfy that for you.

Pat realised: “I get to choose what happens with my disease and how I react”. He realised that he had to step up and live the life he had been given for his sake and the people who love him:

Life doesn’t always work out the way you want it to. You have to play the hand you’re dealt – there are people who are relying on you and are invested in you. They want you to succeed, they share your pain and your emotion and they want you to do well.

A key part of this for Pat is avoiding hope and fear – what he sees as flip sides of the same outlook. He explains that we tend to hope that things will happen or fear they won’t. This often leads to disappointment. However, “positivity can turn what happens to you into whatever you want it to be”. He says: “You have the agency over the outcome – don’t give that to other people.”

Coping with a chronic illness

None of this is by any means to say that things were easy for Pat to accept: “You tend to go in on yourself at first – it rattles around your brain”. On one hand, Pat didn’t want to be constantly musing about it to the people he was close to, but on the other hand it was difficult to clear his mind without talking about it.

Then he began to read a lot of philosophy and realised that “you don’t get to choose what happens to you in life, but you do get to choose how you react to it”. He explains: “Life is hardship, it’s challenging, it’s problematic, it’s not easy and it’s never been.” But most importantly, it owes you nothing – you owe life.

“When you begin to think about life like that, you realise that it’s a lottery we were born – we get a chance at life”, shares Pat. This means we don’t need to look to the past other than to appreciate the happier moments: “I have wonderful memories, but do I need to play golf or cycle? No, that’s not important to me now.” 

Staying curious

How does Pat mind his mental health these days? “I stay positive. I’m very curious. I read a lot. I think a lot.” He sees curiosity as the gateway to “so much that is good in life”. He says that it will open doors and conversations in so many ways, even if you’re not very mobile.

He stays connected to his friends – he points to studies that suggest that strong relationships are protective about dementia, and are known to dampen the impact of pain and suffering, something that loneliness can amplify.

What would his advice be for protecting your mental health, for people facing long-term illnesses?

You have to find the things that you can do, and stop looking back at the things that you can’t. Keep your relationships alive. Don’t compare yourself to others – don’t try to live someone else’s life.

Each day, Pat spends an hour getting out of bed and showering. It’s a daily struggle, “a mountain that I must climb”, but it’s also the most important time of his day. It’s what he sees as “the price of entry to every day”:

If I don’t do that, I don’t have any life. If I lay around, what kind of life would that be for me or my family? I have a responsibility to myself and them. I take help if I need it, I decline if I don’t.

He explains: “The critical thing is that I’m not hanging around the house and saying ‘God isn’t this awful, I wish things were different’”. He says: “I take it in my stride that things are difficult and I accept it.”

Need help? Support is available:

  • Aware 1800 80 48 48 or email supportmail@aware.ie (depression, anxiety, bipolar disorder)
  • Samaritans 116 123 or email jo@samaritans.ie
  • Pieta House 1800 247 247 or email mary@pieta.ie (suicide, self-harm)
  • Teen-Line Ireland 1800 833 634 (for ages 13 to 18)
  • Childline 1800 66 66 66 (for under 18s)

Do aspects of Pat’s story feel familiar? Cadbury have partnered with Aware this year to bring you the Resilience Series – stories from the people you admire about their experience managing their mental health. If you could do with a little support with yours, please call 1800804848 or email supportmail@aware.ie. There’s a glass and a half in everyone.

COMMENTS (5)

This is YOUR comments community. Stay civil, stay constructive, stay on topic. Please familiarise yourself with our comments policy here before taking part.
write a comment

    Leave a comment

     
    cancel reply
    Back to top