Havelock Ellis said, “One can know nothing of anything that is worth to give unless one also knows how to take.”
My help scale is unbalanced— like a teeter-totter with a child who sits down on the high seat and is quickly slammed into the asphalt because there’s no child on the receiving end.
On the downside of the teeter-totter, I feel I’m not really living unless I’m the one giving. I’m very uncomfortable receiving help, which makes me an expert on the intricacies of asphalt.
Providence providing what I need is different than asking for help. The Buddhist-style affirmation, I expect and accept my unexpected good, is scrawled across the menu chalkboard in my kitchen. But when providence doesn’t provide, I don’t like asking for help.
In July of 1997, an autoimmune disease lurking in my genes since birth decided to make its surprising appearance. I began my lifetime medical endure-a-thon that included regular visits to five specialists, muscle biopsy at the Mayo Clinic, stay at National Jewish Hospital and testing at the Oklahoma Medical Research Laboratory. I was awarded the diagnosis of a rare autoimmune disease. Mixed Connective Tissue Disease is a chronic, progressive autoimmune disease with no cure.
MCTD took away my health coverage, full-time career, and physical ability to effortlessly perform everyday activities… working in my garden or lifting my arms above my head to dry my hair. The most debilitating loss was providing for, and taking care of myself without help.
At age 44, I received the rubber stamped, Federal notification that I was officially disabled. I became officially depressed. There may as well have been a sign with ‘She Needs Help Permanently” sunk in concrete in my front yard
It didn’t help when friends and strangers said I should be grateful it was “so easy” for me to get Social Security Disability. Easy? Thirteen years of a chronic, debilitating disease? One woman wanted to know how I did it; she’d been trying for SSD for years. I must be lucky. Lucky? No, the secret is to pick up a rare disease at the Lottery Headquarters.
My counselor suggested an autoimmune disease support group. I joined one on Yahoo. I was informed I was a newbie and to sit back and be quiet for awhile. My definition of awhile clashed with the head piranhas and incited her and her minions into an online feeding frenzy with me as the bait. I’m positive this group was the inspiration for the movie Mean Girls. I terminated my membership and crawled back into my depression.
The day after I quit the group, I received an email from a woman in Texas. Her name was Susan Gabriel. She and two other women quit the group when I did because they didn’t like the way I was treated. Susan said they’d never seen anybody stand up to the moderator like I did. She suggested we start a real support group: it would be the antithesis of the group we’d left.
We started C-T-D@yahoogroups.com the next day. We celebrate our eighth anniversary on August 18th. Our motto, ‘Connective Tissue Diseases Connecting Friends around the World’ has worked. We have four hundred and forty members living in the United States, England, Mexico, The Philippines, Australia, Japan, New Zealand, Switzerland, England and Canada.
Susan and I met in person in 2005. Sharing the desire to help others creates a strong bond. Last year I was on chemotherapy medications for nine months to slow down the progression of muscle damage. When my hair started thinning and I started freaking, I called Susan for advice because she is on the same chemotherapy medication.
Call her providence, fate or any word in the dictionary, it doesn’t change the fact that a stranger in Texas sat on the empty seat on my teeter-totter and lifted me out of depression by restoring my belief that I was once again able to help.
Causes Jules Jacob Supports
CASA of Southwest Missouri, Master Gardeners of the Ozarks, University of Missouri Master Gardeners, Missouri Court Appointed Special Advocates Association...