Good etiquette generally requires we refrain from talking too much about feeling sick. Family and friends are a little more sympathetic, a bit more patient in their ability to listen but even here there tends to be a limit for all of us in how much we can listen to the experience of another’s sickness. We can handle it in doses. We eventually become desensitized, frustrated or even angry if the person cannot seem to engage any other aspect of life. So what then when one someone’s life becomes marked not only by chronic illness but an illness that is elusive, shifting, mysterious . . . and relentless? How does one speak and relate when the time and energy often spent on work, hobbies or interests are intimately consumed by something that will not allow for any consistent or predictable times of peace or strength never mind joy? What happens when one’s life is thoroughly shaped by one’s sickness? Porochista Khakpour’s Sick is a meditation on such realities and questions. From the outset it should be clear that as an accomplished author who finished a book like this Khakpour is already a testament to the possibilities of a life in the midst of chronic sickness. But that she finished this book was no given. In Sick Khakpour chronicles her PTSD arising from her childhood in Iran during the Revolution and the Iran-Iraq war, drug abuse as a young adult, car accidents and ultimately the diagnosis of Lyme disease which appeared to have marked and plagued her life in unimaginable ways. The insight into the symptoms of Lyme (which are profoundly physiological and neurological) and the American medical system’s continued resistance and seeming inability to acknowledge the condition is worth the read alone. However it was the book’s larger arc reflecting on chronic illness and pain that brings home its full impact.
I had just finished Khakpour’s novel Sons and other Flammable Objects and was eager to read more from her. However, I was not initially taken in by the writing style in Sick. The writing felt a little stiff and underdeveloped in her personal reflections of journeying with mysterious health conditions. However, as the book unfolded I was moved by the demands that chronic (and especially undiagnosed!) pain places on a person. This pain and its various symptoms disrupted her career and family, established a pattern of relationships in which she found herself drawn to men who believed they could help her or at least care for her (none of whom lasted), kept her constantly on the move in search of possible treatments and continuously drained her of her financial resources. Most of us who are paying attention will know someone struggling with a chronic health condition, too often it seems it is a condition that is ruthless in its demands keeping the person guessing, off balance, not knowing when the next feeling wellbeing will come. Knowing such people myself and hearing how difficult her journey had been I found myself growing anxious reading along. I was anxious because I was not listening to a friend but rather reading a book, that like all books, comes to an end. How would this book end? Would she find clarity in her condition and a clear course of treatment? I struggled with my feelings. Clearly it would be wonderful if she found healing and yet if I was honest I didn’t want healing for her, at least not in the book. I didn’t want another narrative of hope that brings healing. I’m not convinced that is what we need.
As it turns out, and as the later sections of the book become shorter and a little more erratic, Khakpour had experienced some relief and some success in treatment and in that time pitched this book to her publisher as a “story of triumph” in which she did indeed get well. However, she acknowledges that such a book never made it past a bare bones proposal and during the writing of the book she experienced one of her deepest depressions. She was unable to write the story she initially wanted, the story publishers agreed to sell and the story we like to read. But as she put it her illness “wrote its own ending.” And finishing the book was itself the miracle.
There were few people who stayed with Khakpour throughout her illness. For those of us who cannot understand such a demanding experience it is difficult to walk with someone without becoming frustrated or feel defeated. We are frustrated because most of us need to feel the hope of real healing and overcoming illness. We want to fight for a cure. This is what sustains many. This is what initially seemed to inspire many of her boyfriends. And it was what kept drawing her back to such people. As she put it, “when the body feels out of place it will cling to anything that looks like life.” But what if we lose the fight or that our energy and hope are simply gone before the healing has come? What if our image of healing or health is simply not possible, or at least there is no real trace or evidence of it on the horizon? What if the time, energy, ability, and interests of someone you love will always be marked by something clawing back what we think could be possible, what we think that person deserves? If we invest in this future images, in particular hopes that our love and care will do more than it can, then we will likely fade from these people’s lives because we are then ultimately committed to something that does not and may not exist rather than a commitment to the person themselves. It is difficult to be nourished never mind thrive from a place that does not exist and so has nothing to offer.
In the end Khakpour’s story is not what I wanted for her personally but it is what I think we need in the midst of our realities of chronic illness. It is necessary to struggle for what may yet be possible. Hope is not a bad thing but we need to be aware of what shape it takes and what it is invested in. If we are insistent on thinking we know the end of the story or that our wellbeing is bound to that ending we will likely pass by and out of the lives of those who struggle because we will not have the resources, stamina, or understanding of a story that must be lived in the present. Theologian Catherine Keller wrote, “To love is to bear with the chaos. Not to like it or to foster it but to recognize there the unformed future.” Khakpour’s Sick is a miracle. And a miracle, I am coming to believe, is only for a moment; a moment to see and experience the formed future in the midst of chaos. This may even be one way of reading miracles in the Bible. Perhaps the miracle stories pause, linger and slow down a moment in the midst of chaos. We know Jesus did not ‘solve’ anything and yet we might experience him, experience good news moment by moment. We need more stories with such miracles for they draw our minds away from the hopes that we have and keep us attentive and present to those around us for when we are more fully invested in what is then we may yet see and experience what we didn’t think was possible.