Feeling ill every day is a lot like being caught in a strong current. I have developed this allegory in order to illustrate my struggle with chronic illness. It’s a representation of the dichotomy of striving to make progress in life but being unable due to all the pressures of illness bearing against me. It’s a strange metaphor for someone who both cannot swim and has a genuine fear of deep water. What this concept doesn’t detail, however, is what happens should the current ease and I am able to reach the bank and relative safety. I might make it to dry land, but it doesn’t tell me where I’ll go on from there; how I will get home.
It is that intangible thing, home, that has concerned me often since falling ill. For many people home is where they grew up, but owing to certain circumstances that is a consideration I may not reasonably make. In previous years, I have always considered wherever I lived my home. It didn’t matter where I was, if I wasn’t with family I was home. But now it has become apparent that this isn’t even a qualifier I am comfortable with.
All of this makes me sound like some kind of rover; someone more comfortable shelling a few hundred on an Interrail pass than settling down for a few years in one place. That’s not true, though. I’m actually the kind of person that puts down roots — shallow ones, but roots nonetheless.
Now, having had those roots pulled out and having been forcibly placed somewhere I don’t want to be by sickness, the question of home feels all the more pressing. Looking back, I wonder if this hasn’t always been a vital question in my life. Home to me always felt like something that was far away and in the future: It was a vision I had, not something I necessarily had a right to. For the longest time, that vision was the image of a forest-side cabin in Scandinavia. I have never visited Scandinavia, nor I have I even stayed in a cabin before — unless you count an optimistically titled “Chalet” in the back garden of a bed-and-breakfast in Wells-Next-the-Sea. Yet I can imagine this future as clearly as my fondest memory.
The English language fails to adequately explain this particular sensation. As we often must, for a succinct description we must turn to German. The concept of Sehnsucht translates literally as a kind of longing, yet it is more than that. It is the yearning for something you may not have experienced yet; of a place you have not yet seen. In times of strife, this nostalgia for something that hadn’t happened yet kept me going. It was a promise of future definition in times when I lacked any meaning.
Chronic illnesses have a way of exacerbating existing problems. I could present a litany of physical and cognitive issues that have worsened since my sickness’ onset, but perhaps the hardest to deal with is one’s own expectations. Tempering them takes a long time; working out one’s own limitations is a process not a single realisation — and even then it is hard not to wish that you are capable of more. Since I fell ill, this far away goal has rocketed closer. Not because it is any more attainable, but because I need it so much more. And yet more and more I find that I’m admonishing myself for not being any closer to this eventuality; this finish-line that I may well never have crossed if I was hale anyway. It’s a curious response to the derailment of one’s own life: beating yourself up over it.
There is a regulation in cricket referred to as the Duckworth-Lewis Method, in which an innings interrupted by weather will receive boons to its score depending on factors such as the number of wickets in hand and run-rate. This is so that a team under the impression that they would have longer to compile a score, only to be interrupted, are not hampered by having batted in a style suited for fifty overs when they only end up with seven. It is with this attitude that I must force myself to approach my current situation. Being unaware, naturally, that illness would derail my life, it would be unfair to penalise myself for not preparing for it or for not being able to do more now.
This is difficult to do. The word “incurable” is not lost on me, but that doesn’t mean I am not somehow convinced that there is something I must be able to do. There must be some way, I tell myself, for me to make the best of this situation and, in the long run, make a life. In doing so I return again and again to that question of home and of discovering the comfort I so desperately need. For what better start to making a life could there be than finding a place to call home? Yet I must ask myself where that can be found that is within my reach, and how will I know it when I see it?
Home to a lot of people is something to return to. It is the promise of relief whether at the end of the day, after a long journey, or in times of hardship. It’s a welcome refuge from the world that’s rushing by. Yet, when that sanctuary isn’t a clearly defined or established thing in someone’s life, how do they go about finding one? Even Odysseus, away for twenty years, had a home to come back to. When (or perhaps I need to familiarise myself with the word “if”) I find the necessary means to overcome my illness, I won’t have any such comfort to return to. The world I enter into will be completely different to the one I left behind. I wonder how I will cope with that.
I have lost much since falling ill, but nostalgia is a powerful feeling. And even though I haven’t got much left of my old life, those visions still remain. In quiet moments, when I have no choice but to consider my situation, I still find myself standing outside a snow-covered cabin sitting on the edge of thick forest. It looks the same as it always has. It’s homely and welcoming, the kind of place to put down roots. Except now, maybe there’s river running before it.