Hi, my name is John and I have severe idiopathic peripheral neuropathy.
My wife and I lost a son very recently. His death hit us like a sledgehammer to the heart. We responded to the horrible news with unstoppable grief and pain. Soul pain, heart pain, head pain, body pain, nerve pain. Every imaginable hurt enveloped us in this senseless tragic loss. And yet we had no choice except to take the next step even while wondering how we would survive this dark new reality. Fading flowers surrounded us.
My precious wife hurt in her own way. She would never again hold -- or hug -- the sweet child she once carried in her womb. He was lost to her now and nothing could be done. She suffered and grieved as only a mother can. Beyond the pain there were questions, thoughts, worries and anger. Processing a death is not quick or easy. Nor should it be.
The physical pain of my neuropathy was made sharper by all the stress. I felt as though my hands had been crushed as sorrow dripped from my fingertips. My legs, knees, feet, arms and hands were sore, worse than I'd ever before experienced. Sleep was a mocking stranger. I felt more helpless for having to rely on others so often. But there was no other choice. There was much to do: grieve for a young life cruelly shortened, prepare a memorial service, pray for peace and comfort. Beg for understanding.
Through the weeks following his passing, the pain worsened. I muttered "owwww" with every step, every movement. I felt frozen, often unable and unwilling to move, fearful of getting clobbered by another wave of anguish. The physical pain was constant. And that was only a small slice of the pounding emotional and spiritual agony.
I cried, wept, sobbed, and could barely catch my breath at times. A certain song or memory shattered any short-lived calm. Seeing that smiling boy in a photo tore at my heart. Even now, furtive emotions rise and fall below the surface, tangled in my gut. Sometimes I'm not certain that I can bear another moment of this loss. And yet of course I will. I must, for the others I love, those left to grieve.
This article is a transparent reminder that those of us struggling with peripheral neuropathy, CIDP, and similar nerve afflictions feel emotions strongly, painfully. The sensitivity is real, and like everyone, we can and do deal with life even when it hurts. A lot.
We can and will heal -- move on -- supported by those who love and care for us. And to each of you beloved Caregivers please know how grateful we are and how much we need you. Even after the flowers shrivel to dust, you are there.
Thank you.
John
P.S. For further thoughts visit Giving Mom a Break About her Meds, Let's Talk about Mobility, Let's Talk about Speed, Let's Talk about Changes, or Let's Talk about Giving Thanks. You can also read about Using a Handicap Placard, Walker Envy, Saying "Owww" when it hurts, Calluses and dealing with Pain, or the Humor of finding out your personal walker was a star on the TV show Monk! Here are a few thoughts on Exhaustion. If you have to grab a grab bar click here. Finally, if you ever find yourself dropping things like I do, please read this and its sequel about the difference between Tossing Something and Dropping It!
Thanks, Chantal, for the perfect picture. Photo by https://unsplash.com/@chantal.
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