'Tis the month of hearts, after all, so what's more apt a topic than love? Families living with ALS need oodles of love, not only to survive, but to thrive. What kind of love is that which nurtures the ability to rise above mere existence?
A nurturing love is the kind that takes commitment seriously. A person with ALS needs the assurance that he can depend on someone's caring. When one is vulnerable to a disease that saps physical vitality, erodes self-confidence, and keeps one feeling helpless, it is only too easy to succumb to despair. To rebuild despite the daily destruction of muscle and image, one needs constancy in others.
The only thing predictable about ALS is the fact that it is a willful, tireless, petulant and capricious enemy. Its course is highly individualized which makes it hard to generalize from the population it affects. One can only hope that, for the victim, it decides to be indulgent. Those of us who love need to persevere through the ups and downs that mark the course of the illness.
When we say our love is strong, we must mean that it is strong enough to realize its imperfection - that it can wane, not because it no longer cares, but because it also needs nurture. It should seek ways to renew itself - like a soldier in battle that understands he needs reinforcement with sleep, rest, food, respite, fresh supplies. We who love should seek to maintain equilibrium in ourselves so we can deal with daily chaos and an uncertain future.
ALS is relentless. Our love should likewise be.
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Thanks Divina for your thoughtful note as we manage Valentine's Day. We discussed love and coping last night at the support group meeting. If I heard Jan correctly,what gets better are our individual and mutual ways to understand and cope with ALS. Hank (by proxy) and I appreciate each of you who helps us to live with our daughter Jeanie's ALS. Thank you SO MUCH. Love and aloha, Ronaele
ReplyDeleteYour commitment to understanding what affects your daughter, not only physically but holistically, is a tremendous support to all of us who daily deal with the illness. You are a pillar of strength, as well, Ronaele, and we all draw from that. Thank you always for sharing.
ReplyDeleteindeed, that we grow in knowledge and understanding of and thriving despite the illness is testament to our collective and individual strength.