Carl:
It is Sunday morning, a dull, overcast day. The small, rural town where I live is quiet for the moment, the stores not yet opened. I have been sitiing here for a long time now wondering how I might be of some help to the both of you when so much distance and unfamiliarity intervenes. Words are feeble replacements for actual presence.
You write of your disappointment, guiilt, and resentment, and of the longing for those moments of humour you love to share with your wife. It is an enormous loss when such moments are weakened or lost altogether within the confusions and fury of an illness. It is a loss for the both of you, a fraying of an intimate link, a stealing away of a gift it was uniquely and importantly yours to give to her. In its absence - in terms of my own experience at least - loneliness, fear, grief, and a debilitating sense of helplessness.
We stand up as best we can, for as long as we can and absorb the assaults and insults that accompany traumatic illness. In spite of our anger, resentment, fear, and grief, we provide what small comforts remain ours to give. I believe, in the face of increasingly complicated medical demands, those small comforts which remain ours to give are increaingly matters of physical presence - the sound of our voice, the touch of our hand, the warmth of our body, the ache of our heart. Such gestures of love and intimacy and hearbreak are always ours to give, always - regardless of how complex the medical circumstances become, and regardless of the muted or apparent lack of response they might evoke. We give comfort through the warmth of our touch and the tenderness in our voice and that giving resonates however dimly within the heart and mind of the one we love.
Carl, it is not an indulgence on your part to seek rest. It is not selfish to let others carry you for an hour or a day or a series of days. It is not an indication of weakness, or failure. It is a necessity, a necessity if you are to continue to care for your wife. It is also a gift you give to those friends and family members who want and need to care for the both of you - it is the gift of community, a realization that you and your wife continue to exists within a circle of friends who love and care for you. I am not unfamiliar with the sense of guilt you mention as well as its inevitable and caustic companion - resentment. Those are difficult, almost intractable emotions with which to contend. Sometimes it seems to me we need the expressed permission, intervention, or even authority of others to allow us to block our ears to their torment at least momentrarily - and rest, rest, rest.
I share your longing to get back to before - before the diagnosis, before the losses, before the nightmare. Such a longing is absolutely understandable I believe, but I have learned over time that, at least in our case, such a return to "normalcy" is not to be. There wil be no satisfying Hollywood resolution, no cavalry riding to the resue in the knick of time, however much I might long for such a blessed event, however unfair or cruel the real story so obviously is and will be. You hold, and in turn, are held. You forgive yourself your weaknesses, your failings - or are forgiven them. You offer the physical and emotional comforts that remain in your power to give to your wife- however minor or seemingly insignificant. You hold her hand, stroke her cheek, assure her of your loving presence. You struggle sometimes stagger through each new day, each new compromise, each new demand. And you surrender into the arms of those who love you when emotional and physical exhaustion leaves you incapable of doing one more thing, facing one more traumatic moment, solving one more chalenging problem. There are no real maps; each journey is different in its details. One step at a time. I don't know of any other way.
I do know, however, that it is best to travel in the company of loving companions. It is a necessity for me. You will find such companions on this site. Turn to them - abide with them - to use a lovely, ancient expression. They are heart-wise, compassionate, and steadfast. Their wisdom, and compassion is rooted in experience.
Write again if you wish. I do not have any answers myself. I am as lost, and broken, and angry as anyone else and wishing daily it were not so. But I will help in whatever way I can, if its only to offer my friendship, affection, and support as you move through each day.
Jim