MEMORIES		END OF ERA, BUT BATTLE CONTINUES

My sister launched the National Carcinoid Support Group at the end of 1996 (as I recall), considered the first such group extant in either the virtual or real world to provide information and collegial support for families immersed in a battle with the rare carcinoid cancer. During the course of extending this support, and the NCSG's tour of service, we all would find that carcinoid was not as rare as the medical world had thought.

Feeling Your Pain, As A Certain Willy Once Said. Despite the involvement as webmaster and board member of the NCSG, I must admit that the added contact sometimes compounds that feeling of helplessness, although it is shared by all who suffer at some time in their lives.

Helplessness, that is, to the extent that I read about the desperation and suffering of the hundreds who e-mail the Web site each year. Most not knowing if their physician really knows what to do about their ailment (in this respect, the resources developed and linked by the NCSG make me feel useful). Still others, watching a beloved family member fight the noble fight, but feeling so helpless. Yes, I can and do relate all too well to that.

Other families write about a loved one with carcinoid having no choice but to go to work each day in excruciating pain, and no earthly remedy or resource I could refer them to could really help. In finding a response to such inquiries, I feel inadequate and all too helpless, joining them in a variation of the emotion they are expressing.

Perhaps that, in some way, is intended, as the only long-term hope available — to all of us collectively and each of us personally— is with our God. ("Come unto me all you who are weary and heavy laden, and I will give you rest." Yet also reminding us that this life should not be our destination.) Sometimes, in the midst of all the suffering we can endure on this earth, we either shake our fist at Him or even bitterly deny Him. Understandable but misplaced anger, to be sure. Yet, He loves us still, fully knowing as only He can, that the fallen nature our first ancestors once freely chose and have passed on since the beginning of mankind, not only brought death to all our lives, but disease and suffering as well. Although we all share a common bond in that condition, it seems some of us receive far more infirmity than others.

Unfair, indeed, but perhaps not all for naught.

For even that suffering is not totally without purpose or some benefit. Just as this support group was borne out of the needs of those in isolation and pain, much warmth, hope and even joy have been begotten as a positive consequence of our reaching out to each other. For those who somehow seem "blessed" to live entire lives largely devoid of physical pain and disease would endure an empty, desperate life if they never experienced the open and utter fellowship of crying with brethren. What value would they, indeed, find from life if they never stopped to sacrifice for another and share a warm jolt of love and grow a bit deeper in return?

After all, as Galil Kibran once said,  "The lust for comfort murders the passions of the soul." Those who escape the pursuit of comfort and, instead, become devoted mothers (as did mine) or invest their passions to that which has lasting value can understand the benefits of that road less taken.

Those who likewise share an appreciation of the delicacy of this brief life we live on this earth increasingly come to understand that much of life's true richness comes from real relationships, even at their most awkward and painful depths.

In that space of experience, we also must realize that true comfort comes from finding peace, love and joy — as imparted by God and those He surrounds us with — from those who draw close to us in the face of conditions that are anything but pleasurable or even remotely comfortable.

Although nobody would rightly ever pray for suffering, sometimes such is what it takes to make us truly vulnerable to receive God's grace and to touch and be touched by friends and family who dare to stay close when the road is steep and the climate turbulent.

— John, Webmaster and Whatever Other Hat
Life Facilitates My Wearing at the Moment

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