When your child is suddenly diagnosed to have a critical/debilitating illness

There is only one thing that I dread: not to be worthy of my own suffering….Dostoevsky

Why Me? Why My Child?

If someone is struck with this unfortunate blow of destiny that his beloved son or daughter has to suffer from a debilitating, potentially lethal disease, or with a medical condition that may have a poor prognostic outcome, and especially if this disease befalls upon him suddenly in a matter of days or weeks, then the resultant psychological changes have the propensity to either shatter him completely or push his psyche into a hardened cocoon. The outer shells of this cocoon may seem hard and impregnate to a casual observer, but even inside that hardened cocoon lies a very vulnerable mind. So, either way, there is every possibility of a breakdown.

The typical metamorphosis of such a psyche happens through four stages—Denial, Distress, Despair and finally Depression. Denial and distress are self explanatory and usually limited. It the despair and depression that may persist and may take longer to subside and may even need therapeutic and psychosocial intervention. None the less, all four warrant attention, and need for support and care. We need to understand the first two, to halt the progression and prevent the development of the last two.

Immediately following the diagnosis of one’s child, most if not all, will have the tendency to disbelief, and they tend to deny the very existence of the unfortunate occurring. Life is so frequently taken for granted by most of us, and we are so engrossed in arranging the paraphernalia of our daily routine that anything out of turn is left aside at the psychological, emotional and even social level. And this adds up to the distress, which is anyway about to occur as a natural course of the condition, owing to the increased indulgence the situation demands, and compounded by the complexities of medical terms and procedures.

Once the realization is fully formed that destiny has indeed taken this unavoidable and ominous turn, then the first questions that confound our understanding are– why me or why my child? Why he or she will have to suffer? Have I done something wrong?

Well, let me tell you with conviction, and with a personal experience that this question perhaps does not have a rational, tangible and demonstrable answer, neither in science, genetics, religion or even in spirituality. Yet it is this very question, and a relatable answer to this is what I am pursuing here. Because understanding this and finding answer to this, for our own sake more than for anyone else’s perhaps, is directly proportional to the level of distress and despair that can ensue. This can avoid the seepage of guilt within our psyche. Man’s psyche is the product of his biological, emotional and psychosocial standing. Yet, a man is more than a mere psyche, as Viktor E. Frankl said.

Coming back to the answer of the question I am seeking, since there isn’t any purely rational answer, I like to believe in the other purely rational option—the theory of randomization. We can understand this stroke of destiny, at best, as merely an act of random allocation. And this is exactly what I tell my patients when confronted with a similar situation: that there are so many diseases that in our life span we are bound to hit upon one or the other merely by chance occurrence even if we leave the social, environmental or the behavioural factors aside.

What, however, is more important than finding an answer to this question is finding a solution, a way out of our suffering. Suffering, as Vicktor said, is an in ineradicable part of our life. Since a man is more than his mere psyche and he in not fully conditioned and determined but rather determines himself whether he gives in to conditions or stands up to them. And, life is nothing but a set of tasks we assigned ourself as we traverse through the journey of life. And, if suffering is an ineradicable part of our life, then suffering becomes an ineradicable task. Only by performing this task to the best of our abilities and completing that we would avoid the development of depression that may eventuate otherwise.

If I was to corroborate this with my own past, then I’ll say that my phase of suffering followed a slightly modified path, denial never occurred to me because by virtue of my medical knowledge and the experience of dealing with patients, I knew suffering to be real; I knew even the worse form of suffering existed than what I was expecting at that point of time. I could handle distress because simply there was no time for that. I had an enormous task at hand, task of finding the diagnosis and a cure for my ailing son. Despair occurred only in sporadic bouts whenever I saw the rueful face of my wife or other close family members. Yes, for a candid disclosure of my feelings, and also to exemplify the true nature of psychological changes I was going through, I must confess that I was slowly being engulfed by a feeling of guilt—of being the causation of pain and suffering for my family. Fortunately for me, my medical background and loving support of family and friends never let my hope die. I never did for once let my guards down, or show my true emotions, until this moment of disclosure, as when I wrote my book or while I am writing this article.

We must, however, realise that everyone, including our children who are the product of our love, have a destiny of their own. The sooner this realisation occurs, the easier it will be for us to accept the fate.

As I wrote in Rage Against The Dying Of The light, destiny has an uncorrectable chance arm and a correctable choice arm. This correctable choice arm was the task at hand for me at that point in time—to sail through the suffering and find the meaning of life. 

Logotherapy says there are three avenues to find a meaning of life, (1) by creating something, (2) by experiencing something or encountering someone; in other words, meaning can be found not only in work but also in love, and (3), the most important, however, is the third avenue to meaning in life, through his suffering. That is, even a helpless man in the most hopeless situation, when facing a fate he can not change, may rise above himself, may grow beyond himself, and in doing so he may change himself. So as to say, turning a fate of suffering into a fate of triumph.

One must strive to be worthy of his suffering. And now I leave you with this very famous quote by Umar Al Khattab: