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When God says no 33 times
Battling ALS, quadriplegic has concern for others
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Michele Franklin is a relatively young woman, a quadriplegic who uses her eyes to control her computer and communicate, saying she has learned so much about transitioning into her new phase in life during her six year progression with the debilitating ALS motor neuron disease.
ALS is shorthand for Amyotrophic Lateral Sclerosis better known as Lou Gehrig’s Disease.
She has become an advocate for alternative Indian medicine that has kept her progression down to a one point measurement in the last two years with the average being one point per month.  Both Michele and her mother enjoy outings at Starbucks made possible by their care givers.
Her mother had a paralyzing stroke some 30 years ago that left her as a quadriplegic as well in her daughter’s teen years that were very active in sports and in life in general.
I became acquainted with Michele through Shaun Ferraro who has been a caregiver for her husband Don for the last year after he came down with ALS and had to leave his job as a truck driver.
Since Michele has no use of her arms or hands, she has chosen to use an eye-controlled computer to communicate with friends and family but more importantly with others who are suffering with ALS.  Her use of eyes was the fundamental basis for her blogs designed to help others with the disease.
Those blogs which she has put online include:
uDying the Living Death
uIt’s not only Happening to You
uMedical Advocacy
uWhat is a Miracle?
uReady or Not
uSomething Special from Michele’s Cousin Erin
In her explaining “Dying the Living Death” with the potentially fatal disease, she opined, “It does not matter what challenge we are facing.  Life changes. Period.  Often that requires dying the living death, putting away the old way of living and moving forward into our next chapter.  This is, by far, the most difficult thing I have had to do, given my ALS and Lyme Disease diagnoses.”
She recalled she had a love for her life.  “I knew how to capture the moment, appreciate everything that I was given, laugh, love and live.....My attitude was contagious and I took joy in sharing what I had learned to become.”
Michele added that that everything she had loved to do was no longer an option and she literally refused to live in a wheelchair.  She had taken every precaution to avoid ever being handicapped and had eaten healthier than most people, was extremely active and tried to pay everything forward — never taking her physical ability for granted.
She said she has discovered that her story is not unique, relating that most people she has met on her ALS journey lived full, healthy, rewarding lives.  “It may not be relevant, but I do believe my healthy habits have helped me stay stronger, longer.”
Reflecting on  an overview of her character, she said, “I may not be able to hug, but I can still share a smile!  I can’t chew my food, but I can still suck down coffee.  I may not be able to go water skiing but I can go boating.  I can still enjoy hiking flying, taking road trips, visiting family and write,” she chimed.
“All that said, how do we transition graciously? — It’s a choice.  It has to be consciously driven.  Let go of whatever is holding you back from finding new sources of enjoyment,” the quadriplegic added.
Michele quoted her grandmother from years ago who many times repeated, “Where there is a will there is a way.”  She noted that others suffering from similar conditions need to remember they impact everyone they encounter, knowing that it will help. 
“We are not here on earth for our own pleasure, rather we are here for each other,” she said.  “So, when it seems like too much to bear, take a minute to consider your options.  It is a good life, and your experiences are shaping everyone in your circle.”
She had been referred to a neurosurgeon with her initial symptoms that began in her right hand, first with a finger and then her entire hand stopped working. It was assumed that she had Ulnar Nerve Entrapment.  It was suggested it was something that could be resolved by opening her up in a surgery and releasing that nerve.  She said somehow she knew better with ALS often being very difficult to diagnose in the first year.
The surgeon, she remembers, became  highly agitated knowing she was not convinced an operation would solve her dilemma.  He eventually suggested she dropped her case — suggesting that other patients should always take an advocate with them to a medical appointment. 
“It wasn’t only extremely stressful, but it also could have been completely avoided by having someone else in attendance,” she said.  Michele later chose an alternative form of Indian medicine, Ayurvedic, and now reports she is only seeing one progression of the disease in two years where most patients have one point of progression per month.
n a recent session with her Ayurvedic practitioner, they were discussing life and death.  “I am one who prefers to be very prepared, when possible,” she pointed out. “So I am trying to organize my passing.  Dying does not scare me, but living without quality, sure does.”
Michele quoted Albert Einstein, “There are only two ways to live your life.  One is as though nothing is a miracle.  The other is as though everything is a miracle.”
he said she has been praying for a miracle her entire life — even using every birthday cake wish to ask God to heal her mom following her stroke. She added that she had since resigned herself to the fact that God must have a different plan when she quit expecting anything to happen.
“What do we do when God says” NO” — 33 years later and I am still questioning the difference between having faith and expecting God to give me whatever I want.  My late ex-husband used to say that when we have expectations, we set ourselves up for disappointment.  I have found this to be true -- but I have to wonder — if we don’t expect anything, then what pushes us to grow?”
Michele was sparked to make a difference by her cousin Erin to build a large disabled community center in Stockton with two very dear friends and partners in 2010.  She devoted quite a bit of time over recent years on the project before she lost one of her partners in 2013 and her ALS progressed.  Her time was used to develop a business plan wanting to create a life with more independence for her mother who had been wheelchair bound since 1981.
Over the past four years, Michele realized that her dream to create a $1 million Community Center, Disability Transitions, Inc., may not takeoff  because of her ALS sickness. 
She has long desired to offer specifically for disabled adults transitioning from a normal life to a life with disabilities so she can teach others “how to transition,” using self-help techniques and best practices that she shares from over her 30 years of experience with the handicapped -- herself, her family  and others. 
To read Michele’s other blogs on ALS and helping others transition the disease and its effects go to: The password is disability-transitions.Ghost.lo. She also has opened a Gofundme account to help in the costs of her medical treatments.