THIRTY-ONE years ago, I was born with an undiagnosed neuromuscular condition. In layman’s terms, all my muscles are much weaker than they should be — and to say that this has had a profound effect on the course of my life would be an understatement.
I cannot walk or stand, and spend most of my day in my wheelchair. I am reliant on a mechanical ventilator to breathe; and I have a team of carers who help me with all the day-to-day tasks that I cannot accomplish alone. Like most conditions of its type, mine is progressive, and will only get worse over time, though I am fortunate that my decline has been relatively gradual for many years.
Having to live with a condition like this cannot help but raise questions that many people in situations similar to mine have had to contend with at some point. With no hope for improvement, why do we keep going? Is there some force that propels us forward in life, in spite of the challenges that we face? I am only too aware that there are probably as many answers to these questions as there are people given cause to ponder them; but if I have an answer of my own, then I think it is this: hope — and the promise of a better tomorrow.
This might seem a fairly glib and trite response to such wide-ranging questions, and I would not judge you for coming to that conclusion. But it is precisely that inherent simplicity that makes it so applicable to my life. Conditions like mine are often referred to as “life-limiting” — and it is hard to dispute the label. When I used the phrase “having to live with a condition like this”, that was no idle choice of verb. Hard-won experience has taught me that living is not the same as existing.
Yet, whatever situation I find myself in, and whatever the emotional results of that situation — pain, anger, depression, disappointment, sometimes simply the crushing boredom of waiting around with nothing to do — the hope that tomorrow will be better than today has allowed me to endure beyond what I previously thought possible.
This hope need not be naïve; it is not conditional on any guarantee of future happiness. It is simply, in its own way, a question of faith. One aspect of learning to cope with a condition like mine — learning to truly live — is coming to terms with what you cannot do in life, and focusing instead on what you can do. If your life is limited, this often means taking comfort and solace from simple pleasures.
TAKE literature, for example. Reading has always been a refuge for me, especially in times of anxiety and doubt. It is one of a select few activities that I can do almost without compromise; it is as accessible to me as to anyone else.
A significant aspect of its appeal is the variety that it offers: different books can fulfil different needs at different times. Sometimes, they can be pure escapism, a retreat from life’s unpleasantness into another world; at other times, I find that the act of reading assumes a more meditative function. Especially at difficult points in my life, reading becomes a search for answers, an attempt to quell the worries of a troubled mind.
In my choice of reading matter, I am often drawn to books whose theme is hope, and I have found myself relating to that theme in ways that I did not expect. A favourite of mine is Shusaku Endo’s Silence, a deeply personal tale, informed by the author’s experiences as an outsider: as a Christian in Japan, and as a foreigner during a spell in France. Endo draws on his own experience to tell the moving story of Sebastião Rodrigues, a Portuguese missionary attempting to maintain his faith while trying to keep Christianity alive in Japan during the nationwide persecution of Christians in the mid-17th century.
THAT experience of being an outsider is one that I understand well: the thoughts and feelings that come from the particular circumstances in which I have had to live my life can be difficult to convey to others who lack that personal knowledge; and I was struck by how much I could empathise with Rodrigues’s difficulties in explaining his faith — the defining aspect of his own life — to the uncomprehending Japanese authorities. His hope comes from that faith, even when his traumatic experiences in Japan cause him to doubt it, and when he is finally captured and forced to make an agonising choice.
His story is not a happy one, but it reinforces for me the idea that hope is not naïve. Rodrigues may have no way of materially improving his situation, of rescuing Japanese Christianity, or ever seeing Portugal again; and yet he quietly maintains his belief in a better life beyond this one, and his dignity in doing so has stayed with me long after I turned the final page.
In contrast, Walter M. Miller Jr’s A Canticle for Leibowitz, which concerns a monastic order’s attempt to preserve mankind’s scientific knowledge in the aftermath of a devastating nuclear war, shows the theme of hope at a much larger scale. This is not the hope of an individual: rather, the monks of the Albertian Order of Leibowitz sustain themselves with the belief that, in some far-off future, humanity might once again become worthy to reclaim the knowledge lost in the aftermath of what they term the “Flame Deluge”.
This hope sustains their mission for centuries. Each generation of monks hand down the task to the next, content in the understanding that they have played their part in ensuring a brighter future, but with no expectation that they will themselves see it.
At times in my life, it has been hard to see that brighter future for myself, but A Canticle for Leibowitz highlights how hope does not have to be purely personal: that tasks greater than any individual can be their own reward. I am reminded of it, and given comfort, whenever my life takes an uncertain turn.
YOU might be forgiven for thinking that the struggles of fictional clerics bear little outward similarity to the life of a disabled man in the 21st century, but therein lies one of literature’s greatest gifts: the ability to see ourselves reflected in the most unusual situations: the ordinary made extraordinary.
Both these books are wonderful works of art. Their merits go far beyond the brief descriptions that I have given of them, and I would recommend them to anyone who shares my love of literature. Whether others will take from them what I have, I cannot say, but I am sure that they will find them valuable in their own way.
Regardless of the differences in our personal circumstances, the road of life can be uncertain at one time or another for all of us. How we choose to deal with that uncertainty reflects who we are, and how we have lived. Living with my condition has not always been easy, but that sense of hope for the future has sustained me for many years, and I trust that it will continue to do so for many more to come.
Tom Hammond has a first-class degree in History. He wrote his dissertation on the history of jazz, and has a particular interest in maritime history and the history of Japan.
