Pat Caslin: 'There is no gift of resilience that someone will give you', Aware Resilience Series - 2019

December 2019, Based on keynote delivered at Aware National Conference, Dublin, Ireland

I'm a child of the 60s. Grew up in Terenure in Dublin. One of six kids. We had a very happy normal childhood. It turned out well. I did a good degree. I did very well in college and as a result of that I was one of the kids that was very much in demand. I ended up working in KPMG where I worked for about three years and then got on a career development program. Went to the States for a year and a half. Came back and then I left and had a 30 year career in industry.

When you're young you compare yourself with other people Comparing yourself with others is a really invidious thing to do because there's always going to be people that are greater or lesser than you. There are always going to be people that are more or less successful than you.  It took me a long time to realize that I have to live the life that I live not the life that other people want me to live.

I got really odd sensations in my legs. It felt like the skin had just been tightened and it had become too tight for my ankles. It took me about a week or ten days to get a diagnosis. It was originally diagnosed as transverse myelitis. I asked the doctor to write that down so that I could go and look it up when I got home, which I did. I realised reasonably quickly that this was going to turn into multiple sclerosis.

It was very slow moving and for the first five or six years. I was fine. I started cycling because I could. I played a lot of golf. We didn't tell anybody about my multiple sclerosis until I was probably five or six years diagnosed because I didn't want to be treated any differently. I also didn't want to be excluded from job opportunities. But then my walking began to get bad and then we had to tell people. And  then it was out in the open.

The big challenge that I had at that time was to get myself through the fear of this becoming progressive. That was probably the darkest time. The worry about would this become progressive. What would that look like? Would I be disabled? When would I be disabled? How disabled would I be? And oddly, when it became progressive, that was the time that I faced up to it and in facing up to it I've come to a completely different view of what life of multiple sclerosis is like.

In trying to understand the circumstances that I found myself in, I began to read and read a lot, read a lot of philosophy, read a lot of psychology. I particularly turned to stoic philosophy. Stoic philosophy is about acceptance. It's about facing up to your challenges. It's about going towards adversity and not shying away from it. I found that really, really valuable and it gave me a lot of a lot of tools, simple things.

I read Viktor Frankl's book “Man's Search for Meaning” in which he says that we don't get to control what happens to us in life but we do get to control how we think about it and react to it. That was a really empowering moment because I realized that how I deal with things is how I perceive them.

Support is everything. Loneliness is toxic. The superficial things that go on, the small rows that you have, the difficulties that everybody goes through, if you can set those aside in the knowledge that the person that you are with, your friend, your wife, your kids are fundamentally on your side, when all the chips are down, they are with you, that is the bedrock on which your mental health is built.

For somebody who's going through difficulty, who finds their life has been derailed from the path that they had planned, the critical thing for me is to accept what you're given; is to embrace that fate whatever it is; to look at the things that you can do and to try and put the things that you can no longer do behind you, because if you try and hold on to the things that you used to be able to do, if you try and cling to the life that you had when patently that life has changed, well then you're going to end up in a really, really difficult place.

Everybody has resilience within them. Everybody has the capability to achieve that if they're prepared to work on it. There is no gift of resilience that somebody will give you. Resilience is a process. It's something that you have to work at. It's something that you have to face up to, and it's something that you need support to do. But if you do all of that, you can become resilient.

Everybody has it within them.

Pat Caslin: 'Life gives you compensations', 'Chronically ill, very healthy', TEDx Dun Laoghaire - 2018

October 2018, Dun Laoghaire, Dublin, Ireland

I've all but lost the use of my legs. This is what ms has done. It's  progressively disabling me. And it's incurable. But I wouldn't swap with any of you because I'm very healthy.

I want to share with you tonight what I think how I think about health, how I've been generously compensated for having MS how I used to be haunted by the prospect of my MS becoming progressive and when it did how I now live very easily with that.

So how I think about health. I've let go of the things that I can't do. I used to play golf. I used to cycle I used to be  very active but I can't do that anymore. So I've just let go of that. There's no point in clinging on to things that you can't do. It only annoys you.

I developed a curiosity and I now feed that curiosity. I have the time that I got back to follow my curiosity. I read and I unpack the insights in what I read so that I can share those.

Illness, I've accepted. It's part of who I am. I don't fight it. I don't try and shut it out. It's in me it's not going to go away. I can waste a lot of energy worrying about it and fighting it but it won't go away so I've accepted it. It's behind the door. It sometimes makes itself present and I embrace it when it does and it goes back behind the door.

I have great well-being but I protect it. I get a lot of spasticity in my legs and cramps. I can take drugs for that but they upset my stomach so I don't take them because my well-being is more impacted by the drugs and the upset than it is by the cramps and the pain.

And if I don't have well-being well then I can't be positive.  And positivity is really important to my ability to socialize, to meet people, to share the insights that I've had.

We all need relationships and conversation to allow us to clear our minds, to be able to think clearly. If you don't see how your words land on others and you don't feel their body language coming back to you, you don't really know how your thoughts are being seen. You don't get a chance to clear your mind. and this is something that is really important. You can't have meaningful conversations. You can't really know yourself.

Was I always like this? God no!

About 11 years ago, I was 47, everything was great. Life was good: much to look forward to. Playing golf, really involved. And one morning I woke up and it felt like the skin on my legs had shrunk and had become too tight for my ankles. I got really worried about this: for about a week I thought that I might have a tumor on my spine and that my lights were going to go out, that I wasn't going to survive. And when I saw a doctor, she said to me that I had transverse myelitis. I had never heard of that so I said to her: “will you write that down for me please?” and when I went home, I looked it up and after a couple of hours I realized I was going to have multiple sclerosis.

And that was both a shock and a relief: a shock that I would have MS and a relief that I would be alive.

My wife and I decided then that we weren't going to tell anybody about this: we didn't tell our families; we didn't tell our friends; we didn't tell our children. We didn't want to be seen differently. We didn't want to be excluded from things and I didn't want that if I ever needed a job that I would be excluded from that job or the prospect of getting one by the fact that I had a disease that was unpredictable that nobody would be able to tell where it's going. Nobody would take that risk

Because this couldn't be the conversation around the dinner table all the time and there was nobody else to talk to about it, it went around and around in my brain. It haunted the quiet moments when things were not busy. I was always there, in the shadows, ever-present, watching, waiting, haunting.

Then about three years later it turned progressive and I had a real difficulty with how should I think about this. I liken it to being drunk. The drunk’s problem was that it was more the width of the road that was bothering him than the length of it. He was going over and back between the ditches rather than getting on down the road. The ditches for me were on the one hand that I felt that if I accepted MS that I might become depressed. I'd fall into victimhood and it'd be why me? And on the other ditch, it was the fear that if I fought this Really, really hard that I might fail and I might end up in this ditch over here.

I had to fight, so I started different diets taking supplements. There were separate meals for me at home. There were separate shopping lists and when we were invited out, it would be “what's on the menu?” “No I can't eat that; no I can't eat that  “. I was turning everybody's life upside down family life and friends. I didn't realize that I become completely self-absorbed. I had lost my awareness and not only was I not getting down the road I wasn't even on the road. I was firmly in the ditch and I had no idea that I was.

Then a friend of mine said you know you should get a second opinion on this. I was going to the States on a trip and there's a superb center for research in the University California, San Francisco. So I booked an appointment with a neurologist there. The big question I had to ask him was: “What's my progression likely to be?” He said to me: “You have a progressive disease and progressive diseases progress”. And I thought: “Hang on, I've just come halfway across the world. That isn't great value for money”

When I got home things began to change a little bit. The changes started like this.

The first thing I realized was that I had a small chance of slowing my progression. I had a very high risk of alienating everybody that was important to me.

I had a light bulb moment when I realized that I don't get to control what happens to me in life but I do get to control how I think about it and react to it.

When I thought back on what the neurologist in San Francisco said to me I realized that he had not sentenced me to the tyranny of a prognosis. Because if he had told me this is going to be your prognosis, that would have entered my brain, it will become it would have invaded my subconscious and I would have fitted everything that happened in to that prognosis and that would have become my outcome. Instead he allowed me to choose my own realities, to think about this disease in the way that I wanted to think about it.

Then later that year a friend of mine got terminally ill and died and I began to realize what's important in life and the possibilities for the things that I can do rather than the things that are no  longer available to me.

I got a perspective on something my mother has always said She said: “if everybody in this room put their troubles on the table, we'd each walk out with our own”. I wouldn't swap with anybody. I’d give it back, but I wouldn't swap.

I began to accept my MS. I accepted the crutches. I accepted the hand controls on the car to drive. I accepted, eventually, that I needed a wheelchair, and eventually we remodelled our house so that we could live downstairs because I couldn't get up the stairs anymore.

That’s what I've realized, is that life gives you compensations for the challenges that are put in front of you if you're open to looking for them. I've been compensated generously with being able to pursue my curiosity. I found a voice that I would never have found otherwise if I didn't have MS. The important things in life become apparent. What's apparent to me is the importance of my relationships, my amazing wife and family, my fantastic friends. These are the important things.

I've begun to understand that there is much for me still to learn, there's much for me still to be positive about there's much for me to look forward to. This is why I'm healthy and this is why I wouldn't swap at anyone