THIRTY-ONE years ago, I used to be born with an undiagnosed neuromuscular condition. In layman’s terms, all my muscles are much weaker than they needs to be — and to say that this has had a profound effect on the course of my life could be an understatement.
I cannot walk or stand, and spend most of my day in my wheelchair. I’m reliant on a mechanical ventilator to breathe; and I even have a team of carers who help me with all of the day-to-day tasks that I cannot accomplish alone. Like most conditions of its type, mine is progressive, and can only worsen over time, though I’m fortunate that my decline has been relatively gradual for a few years.
Having to live with a condition like this cannot help but raise questions that many individuals in situations much like mine have needed to contend with sooner or later. With no hope for improvement, why will we keep going? Is there some force that propels us forward in life, regardless of the challenges that we face? I’m only too aware that there are probably as many answers to those questions as there are people given cause to ponder them; but when I even have a solution of my very own, then I believe it is that this: hope — and the promise of a greater tomorrow.
This might sound a reasonably glib and trite response to such wide-ranging questions, and I’d not judge you for coming to that conclusion. But it’s precisely that inherent simplicity that makes it so applicable to my life. Conditions like mine are sometimes called “life-limiting” — and it is difficult to dispute the label. When I used the phrase “having to live with a condition like this”, that was no idle alternative of verb. Hard-won experience has taught me that living will not be similar to existing.
Yet, whatever situation I find myself in, and regardless of 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 can be higher than today has allowed me to endure beyond what I previously thought possible.
This hope needn’t be naïve; it will not be conditional on any guarantee of future happiness. It is just, in its own way, a matter of religion. One aspect of learning to deal with a condition like mine — learning to really live — is coming to terms with what you can not do in life, and focusing as a substitute on what you possibly can do. If your life is proscribed, this often means taking comfort and solace from easy pleasures.
TAKE literature, for instance. Reading has at all times been a refuge for me, especially in times of tension and doubt. It is one in every of a select few activities that I can do almost without compromise; it’s as accessible to me as to anyone else.
A big aspect of its appeal is the range that it offers: different books can fulfil different needs at different times. Sometimes, they could be pure escapism, a retreat from life’s unpleasantness into one other 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 seek for answers, an try to quell the concerns of a troubled mind.
In my alternative of reading matter, I’m often drawn to books whose theme is hope, and I even have found myself regarding that theme in ways in which I didn’t expect. A favorite of mine is Shusaku Endo’s Silence, a deeply personal tale, informed by the writer’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 inform the moving story of Sebastião Rodrigues, a Portuguese missionary attempting to take care of his faith while attempting to keep Christianity alive in Japan in the course of the nationwide persecution of Christians within the mid-Seventeenth century.
THAT experience of being an outsider is one which I understand well: the thoughts and feelings that come from the actual circumstances during which I even have needed to live my life could be difficult to convey to others who lack that private knowledge; and I used to be 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’s finally captured and compelled to make an agonising alternative.
His story will not be a blissful one, but it surely reinforces for me the concept hope will not be naïve. Rodrigues may haven’t any way of materially improving his situation, of rescuing Japanese Christianity, or ever seeing Portugal again; and yet he quietly maintains his belief in a greater life beyond this one, and his dignity in doing so has stayed with me long after I turned the ultimate page.
In contrast, Walter M. Miller Jr’s A Canticle for Leibowitz, which concerns a monastic order’s try to preserve mankind’s scientific knowledge within the aftermath of a devastating nuclear war, shows the theme of hope at a much larger scale. This will not be the hope of a person: relatively, the monks of the Albertian Order of Leibowitz sustain themselves with the assumption that, in some far-off future, humanity might once more develop into worthy to reclaim the knowledge lost within the aftermath of what they term the “Flame Deluge”.
This hope sustains their mission for hundreds of years. Each generation of monks hand down the duty to the subsequent, content within the understanding that they’ve played their part in ensuring a brighter future, but with no expectation that they’ll 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 doesn’t should be purely personal: that tasks greater than any individual could be their very own reward. I’m reminded of it, and given comfort, every time my life takes an uncertain turn.
YOU is perhaps forgiven for considering that the struggles of fictional clerics bear little outward similarity to the lifetime of a disabled man within the twenty first century, but therein lies one in every of literature’s biggest gifts: the flexibility to see ourselves reflected in probably the most unusual situations: the bizarre made extraordinary.
Both these books are wonderful artistic endeavors. Their merits go far beyond the transient descriptions that I even have given of them, and I’d recommend them to anyone who shares my love of literature. Whether others will take from them what I even have, I cannot say, but I’m sure that they’ll find them beneficial in their very own way.
Regardless of the differences in our personal circumstances, the road of life could be uncertain at one time or one other for all of us. How we elect to cope with that uncertainty reflects who we’re, and the way now we have lived. Living with my condition has not at all times been easy, but that sense of hope for the long run has sustained me for a few years, and I trust that it is going to proceed to achieve this for a lot of more to come back.
Tom Hammond has a first-class degree in History. He wrote his dissertation on the history of jazz, and has a specific interest in maritime history and the history of Japan.
