Ten years ago a Nicosia man was struck with motor neuron disease. He has since made the decision to embrace life and breathe his way through it, in addition to writing a book and undertaking a gruelling charity walk. THEO PANAYIDES meets him
I find Leonidas Hadjimitses at an interesting juncture in his life. Some of this is news to me, some I already knew about. I didn’t know he’d recently divorced, for instance – he and his wife of nine years went their separate ways a month ago; they have two kids, a seven-year-old son and a four-year-old daughter – or that the day of our meeting, December 8, also happens to be his 43rd birthday. On the other hand, I knew about Breathe Mazi Mas, the recent charity event which saw him walking the eight kilometres from Mandra tou Kampiou to Machairas – a two-and-a-half-hour uphill walk – in defiance of his crippling motor neuron disease; and I knew about Breathe, the book he’s spent two years writing and a lifetime researching, a compendium of uplifting self-help theories which he calls “my legacy for my kids”.
A copy of the book sits on the table in front of us, in a half-empty Costa Coffee on a crisp Friday morning. He calls my attention to the cover, a bisected portrait: “One eye is the sun shining, the other eye is the moon”. I initially assume he intended a contrast between light and darkness, good and evil, but in fact “any direction you take, they’re both beautiful; either the shining one, or the romantic one”. There’s no darkness in his book – or, it seems, in his public persona. Did he go through an angry phase after he got sick, 10 years ago? Leonidas pauses, as if trying to recall something fleeting and irrelevant: “Ummm…”
So he never raged against the heavens? Never said ‘Why me?’?
“No. ‘Why me?’ ‘Why not you?’…” He shrugs: “OK, it happens. These things happen. It happened to me, that’s it. I wish it hadn’t happened to me, definitely – but ‘Why me?’ is purposeless. It’s stupid to say ‘Why me?’.”
But natural, surely?
“These words take you backwards in your life,” he says firmly. “You know, today, based on statistics, more than 153,000 people will die. Today. Based on statistics. So – I’m alive! I mean, just to ask myself ‘Why me?’ is a privilege, it’s a luxury. Some people will not ask themselves ‘Why me?’ today. Because they will die.”
He talks slowly and a little painfully, sometimes slurring his words slightly. After about 45 minutes he excuses himself to go to the bathroom, walking with a cane and an awkward, erratic gait. “I have urinary urgency,” he explains with a laugh; the disease affects his body “anywhere you have muscles,” which includes the voice and of course the bladder. None of this is really in the book, however. You’d expect the Prologue to lay out the details of his illness, but instead it plunges straight into abstract rumination; Breathe isn’t a memoir, it’s a lifetime’s collected musings on the meaning of life. “I began writing this book by hand while still in elementary school, long before the existence of [the] internet,” writes Leonidas at one point, though it’s just in the past two years that he sat down and wrote it systematically.
“B stands for Breath,” he tells me, even the title of the book being “a synthesis of words I find important”. Breath heralds our entrance to this life, and our final exit too; in between it’s “a mirror of our inner world”, changing to reflect our changing moods. “Stop for a conscious breath! You are alive! Feel it!” counsels the Prologue.
He points to the ‘R’ on the book cover: “Resilience”. It’s “about having a purpose, having the energy to achieve the purpose, creating the right habits for this purpose”. He moves on to the next bit: “‘Embrace’ for the letter E”.
Embrace life, or each other?
“It’s about everything. Embrace yourself, embrace each other, embrace life and the divine miracle of life”. Then the ‘A’ stands for Accountability – being accountable “to yourself, first of all… You are here to live your own life, so you need to understand that your choices make up your life. It’s purposeless to blame others, to blame situations. You know, things happen.”
But situations often define our choices, I point out, thinking of his own condition.
Yes, he agrees – which leads us to the ‘T’: “Truths of life. Truths of life is a reality, it’s what happens. You have no control over it, and you need to accept that”. There are rich and poor, healthy and sick, there are toxic people who’ll hurt you or doubt you: “In life, everything happens. So you need to be strong enough to acknowledge this, accept it if you can’t change it, and build on it”. Then, with any luck, you’ll come to the final two letters: the ‘H’, which stands for Happiness – which we always experience through relationships, he notes – and the second ‘E’, which simply stands for Enjoy. “Enjoy life as it happens.”
Leonidas nods in satisfaction, having mapped out his system. Systems, I assume, come naturally to a man whose professional life has been spent working with computers – first in Chicago (where he did an MBA) as a network consultant, then back in Cyprus. He launched the local chapter of the Cisco Networking Academy (a series of courses teaching computer networking), lectured briefly at Philips College, and worked at various banks and financial institutions. Since 2007, he’s been Head of Information Security at Hellenic Bank.
At around the same time, in 2007, he was coming out of his car one day and noticed that his right foot had “dropped”, as he puts it: “The foot just drops, you lose control… It makes a move, [and] you say ‘But I didn’t want to make this move’.” It happened a few times, then spread to his left foot – then, within a couple of years, had become a full-body condition, involuntary movements and weakened muscles. “It’s a type of spasticity,” explains Leonidas. “It’s not that I’m shaking or whatever but it affects the walk, the way I walk… It also affects breathing, affects the voice. It forces me to consciously breathe”.
There’s a fundamental truth in that last sentence, encapsulating what the condition has meant for Leonidas Hadjimitses. He doesn’t know the name for his particular, fairly rare strain of motor neuron disease, or at least he doesn’t mention it. (‘Motor neuron disease’ is actually an umbrella term for various disorders, unlike ‘motor neurone disease’ which refers specifically to ALS, i.e. what Stephen Hawking has.) He doesn’t even know for sure whether it’s degenerative, or how much worse it’s likely to become; it came on so suddenly and worsened so rapidly, yet 10 years later “I’m still standing,” he notes – indeed, if anything, he’s getting fitter, doing 30 push-ups every morning (more than he could manage a year ago) and walking the eight kilometres to Machairas. His body has changed, obviously and dramatically – yet the physical changes aren’t as clear and unequivocal as the change his disorder has brought to his psychology. Simply put, it’s plunged him into a life of self-consciousness.
That didn’t used to be the case. As a young man – even 10 years ago, when he fell ill – Leonidas was notably impulsive, game for anything. What was his plan? What did he want to do? “You know, I’m a Sagittarius,” he replies with a laugh; “Sagittarius want to do everything! They want to enjoy as much as possible in life – and I’m definitely one of them.” He thinks, trying to come up with a more cogent answer: “It was not solid,” he concludes at last. “I just wanted to enjoy life”.
He was very sporty: “Karate, basketball, volleyball, football, discus throwing”. He has a black belt in karate (“‘I have’?” he repeats to himself, and laughs uproariously. “I have it in my closet!”), and even dreamed of opening his own martial-arts school. As a reckless youngster, he survived three motorcycle accidents. He loved dancing, and indeed met his ex-wife at a Latin dance class. (She’s actually Russian, which is also why he wrote Breathe in English.) He wasn’t shallow, or uninterested in ideas – he’s always been an avid reader – but he was like most people, “living a life outside of myself”, seeking thrills and the joy of movement for its own sake.
All that has changed now. He’s still the same tireless person (“I don’t like the word ‘tired’,” he affirms at one point. “‘Tired’ and ‘boring’ are two words I try to keep out of my dictionary”), but can no longer afford spontaneity. “If I let myself just be, I feel I will not be,” as he puts it; enfeebled muscles must be guided, told what to do. Self-consciousness is now a survival mechanism; every single step is a conscious decision. “I think about moving – I mean the movement of the legs, to walk and not fall. The same thing happens also with talking, it’s like I push myself to start and stay in a flow.” His daily routine is almost normal, insists Leonidas: “I do everything like anybody else, actually I say I do most things better than the average person!” – how many people could go on his charity walk without feeling knackered? – but everything has to be planned, that’s the point. Cold is his enemy now; cold weather stiffens the muscles, “I become like a robot”, so he has to dress well or his body collapses. “It takes a lot of risk management,” he admits wryly, ‘it’ being his life as a whole. “Every step is assessed for risks.”
And there’s something else too. He didn’t worry about getting tired on the trek to Machairas, says Leonidas – he knew he could do it – but there were still three things that gave him pause in the run-up to the big day. One was the cold, and whether it might “block” him; another was his weak bladder, and the fear of being caught short; and the third was the fact that he wouldn’t be walking alone (he was joined by dozens of well-wishers) and it all threatened to become quite emotional. Excitement causes spasticity, he explains: “I have to be in a harmonious state in order to operate”.
It all comes together, recognisably part of the same life. The emphasis, throughout Breathe, on self-help and self-consciousness; the systemised thinking, as if crafting a framework of rules to prevent the unexpected; the Facebook page full of inspirational nuggets (“Leonida mou, you cannot believe how much your words are helping me!… Your words give me a ray of light in this dark hole I find myself in”, reads a recent comment by a Facebook friend); above all, the serene persona that admits no darkness, only two kinds of light. It’s the purposeful response of a man who knows he has to look within, be very conscious of his every move, and create a nurturing, harmonious environment without undue excitements. It’s the only way he can fight the disease.
Having a support system helps. His parents are “young,” says Leonidas (that’s the first word he uses to describe them), his mother had him when she was 16; “They are friends to me”. He seems to have lots of childhood pals who all grew up in each other’s houses, and they’re still very close. Hellenic Bank have been great, and supported his charity walk. I recall what he said about happiness being found through relationships – and of course there’s also the relationship with his kids, who (so far, at least) don’t seem too upset by his condition, though his son does complain about not playing football together and his daughter, at four, seems to be gradually realising that Daddy is a little bit fragile. “Yesterday she came and held me by the hand, and told me: ‘Papa, let’s walk together. Be careful not to fall’,” he reports with a fond smile.
“I mean OK, there is this disease, whatever – but the disease does not make you unhappy. Unhappy is what happens around it,” declares Leonidas Hadjimitses in the rapidly-filling-up coffee shop. “Definitely I cannot have as a dream to go and do karate again, or play basketball, or ride my motorcycle – things that I used to enjoy. Yes. Truth of life. I accept it. But there are so many other beautiful things. And one of them is that, finally, I sat on a chair, and I wrote a book! Otherwise, I don’t see me sitting for so many hours.”
Having a support system helps – but one is alone, in the end, alone with a body that no longer does what it’s told, alone with an illness that arrived, out of nowhere, to upend one’s life, alone to write books and create strategies in order to fight it. “Every day I pray to God to fill me with love. The more filled with love I feel, the better I breathe”. Breathing is the key: the key to flow, the key to life itself. Breathing is our most important job in life – and we all have to do it ourselves, no-one else can breathe for us. Leonidas smiles, his story told; the story of a man who got caught in a trap, and breathed his way out of it.