Frustration out west spurred self-assurance

Frustration out west spurred self-assurance

By LIZ THOMPSON

February 19, 2018

This Week News

Twenty-two years ago this month, I did something I regret.

I have reconciled, but can’t forget, so I hope this will serve as a fair warning to others.

If you have ever visited or lived in the Southwest — in particular, Arizona — you’ll understand in a moment.

Winter is the most beautiful time of year there. The mountains burst with riotous flowers. Even the spiky cacti bloom.

When my husband and I moved to Phoenix in July, we were greeted by record heat of 121 degrees. We learned quickly not to go barefoot on the concrete, to drink water all day and to leave the car windows open a bit.

Once winter hit, 70 degrees felt cold. Don’t laugh — that’s 50 degrees cooler than the hottest time of summer.

In job interviews, I was upfront about my hearing loss, not yet the self-advocate I would become. A job offer came, and my only request was that I would not be asked to answer phones. “No problem,” I was told by the CEO’s secretary in the interview.

I shared an office with that same woman, and within a week, she found repeated reasons to leave our office for long periods of time. I reminded her of my request and she said to take messages.

That was like asking a 5-year old to type the financial reports for me.

Failure and many embarrassing situations ensued. I hated feeling incompetent.

A phone ringing put my stomach in knots. Names and numbers were almost impossible for me to comprehend without caller ID. My boss did all he could to help me, but he, too, was baffled. Other staffers were very kind, as well.

The Americans with Disabilities Act was still young.

Finally, I contacted an Arizona state agency for the deaf and those with partial hearing loss, asking for assistance on how to handle the situation. My first clue to the problem should have been when the agency contact suggested meeting at a noisy restaurant. I had to read her lips and have her repeat and repeat.

Her advice, which I should have questioned and, unfortunately, was one of the comments I understood, was: “Without a college degree, you’ll never get a job paying above minimum wage.”

I shook internally, like I do when something serious is impending or happening.

We were about to leave and I said the conversation would have been easier using sign language.

“You know sign?” she said casually. “I didn’t think so since you aren’t deaf.”

But I did know it, and I soon was to be called “functionally deaf.”

Since she was supposed to be the expert, I thought I had no other options. I didn’t know who else to ask.

My husband and I talked it through many times, but we had no other ideas for my employment. Finally, I begged my husband to move back to Ohio — to what was familiar.

He picked up my final paycheck for me. The employee asked him why I was leaving. When he told her my hearing loss was making it difficult to do my job, she said, “I wish she’d said something. My sister is deaf. I could have helped her.”

My husband left a job he loved in a place we’d both learned to love to come back to Ohio, all because he loves me.

We returned to Ohio in February, the grayest month. I swore I’d never get myself in a spot like that again and that I would find answers, even when they seemed elusive.

That experience made me an advocate for people with hearing loss or any special need. I never wanted anyone to have that much doubt in their abilities or think options were so few.

Seven years later, with me now sporting a cochlear implant and true ability to hear and understand, we moved back to the Valley of the Sun. I worked in schools with special-needs children, hoping to spark their confidence. Three years later, we chose to move back to Ohio.

God didn’t put that old doubt in my mind, so be careful when taking advice — expert or not. Don’t live on regrets — learn from them.

 

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Those with MS appreciate help, understanding

Day by day

Those with MS appreciate help, understanding

By LIZ THOMPSON

This Week News
Tuesday March 8, 2016

When people see me walking with a cane, they typically ask if I had knee surgery. Or they might ask why I use a cane.

My answer, “I have MS (multiple sclerosis),” usually elicits, “Oh, I’m sorry.”

How could they know?

Each time I hear this response, I’m reminded that MS is invisible. I guess you could say I look normal, whatever that is.

The 2.3 million other people worldwide living with MS must look “normal,” too.

So every March, during MS Awareness Month, I write about it.

Why should people care about MS if they don’t have it and don’t know anyone who does?

Hopefully, to gain understanding and to think twice before criticizing a stranger who uses a motorized cart in a store (yet looks “normal”), walks into a display (been there, done that), or has trouble navigating a curb or step.

I don’t drink alcohol by choice, but when I walk, I can look like I’ve had “one too many.”

We can use a gentle offer of help and will be grateful for it.

MS is an unpredictable, often-disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.

MS has what I call the frayed-wire effect. A frayed lamp cord often leads to flickering lights.

The covering of nerves, called the myelin sheath, is damaged by MS when the body attacks it, thinking it’s a foreign substance. So MS nerves have segments that are damaged, and the brain-to-body command is disrupted.

Instead of a flickering light, we have trouble walking or moving our hands and arms. We may have spasms, trouble thinking, numbness, balance issues and vision loss, among other symptoms.

In 1987, I lost most of my vision, had numbness in my limbs and couldn’t walk a straight line. Severe fatigue made putting one foot in front of another difficult.

After eight months of medical observation, an MRI led to a diagnosis of MS.

Doctors suspected I was having a series of strokes or had a brain tumor — though the tumor was ruled out early on — so I was relieved to hear MS. I was only 36. Most people are diagnosed between ages 20 and 50.

Once I knew MS symptoms, I looked back and realized I’d had MS since at least age 22.

Prior to 1980, the average time from a person’s first symptom of MS until a definite diagnosis was seven years. The MRI reduced the time to six months.

Before MRIs, when a doctor suspected MS, patients underwent a standard neurological exam and medical history, then sat in a warm bath for a period of time. If they were weak and had other symptoms, they could be diagnosed with MS. Heat is an enemy of MS, causing pseudo flare-ups.

When I was diagnosed, there were no MS drugs and no Internet to research the disease. There are now 13 disease-modifying drugs to reduce disease activity and progression for people with relapsing/remitting MS, the most common type.

In 2010, the National Multiple Sclerosis Society set out to raise $250 million.

This money launched 818 new research projects, 71 clinical trials, 141 projects testing rehabilitation and wellness approaches, and 137 grants to train promising MS researchers.

When people ask how MS affects me the most, the first thing I usually say is that I can’t just decide, “I think I’ll take a walk,” and step outside to do just that. But I refuse to give up, give in or become a miserable grump. I adapt.

MS is an unpredictable disease that can change in a heartbeat. When we put our feet on the floor each morning, if in fact we can do that, we don’t know for sure if our legs will work, at least well enough to carry us through the day.

A strong arm or helping hand is appreciated.

Knowledge is power, as the MS society says.

After all, we’re all just “normal” people getting through life one step at a time. We’re not alone in having something to deal with, invisible or not.

For more information about MS, go to nationalmssociety. org/chapters/oha.

 

ADA’s passage brought rights, responsibilities

Day by Day

ADA’s passage brought rights, responsibilities

By LIZ THOMPSON

 July 20, 2015
This Week News

The signing of the historic Americans with Disabilities Act on July 26, 1990, was in some ways just a start. But in many ways, it was a long time coming.

Something this momentous doesn’t fall from the sky, as I’ve heard said. It happens because thousands of people with disabilities have said, in one form or another, “See me. Hear me. I’m a person with rights, just like everyone on this earth.”

The ADA is the nation’s first comprehensive civil rights law addressing the needs of people with disabilities, prohibiting discrimination in employment, public services, public accommodations and telecommunications.

President George H.W. Bush stated, after signing the ADA, “Three weeks ago we celebrated our nation’s Independence Day. Today we’re here to rejoice in and celebrate another ‘independence day,’ one that is long overdue. With today’s signing of the landmark ADA, every man, woman and child with a disability can now pass through once-closed doors into a bright new era of equality, independence and freedom.”

Those doors Bush speaks of are literal and symbolic. Yes, entry into a physical door, for someone using a wheelchair, was nearly impossible, but entry into employment and many educational situations held the same barriers.

Legally, the historic shift in the direction of the 25-year-old ADA began notably 42 years ago, in 1973, with the passage of Section 504 of the 1973 Rehabilitation Act.

“Section 504, which banned discrimination on the basis of disability by recipients of federal funds, was modeled after previous laws which banned race, ethnic origin and sex-based discrimination by federal fund recipients,” said Arlene Mayerson of the Disability Rights Education and Defense Fund.

Mayerson also wrote that it was the first time that excluding people with disabilities was viewed as discrimination. Generally, it was assumed that problems faced by this group, such as unemployment and lack of education, were “inevitable consequences of the physical or mental limitations imposed by the disability itself.”

Before public education showed what could be done to include those with disabilities in society, it was an “out of sight, out of mind” mentality. Ramps and curb cuts were rare, if in existence at all.

Here we are talking about the physical limitations, but many disabilities are invisible, such as hearing loss and emotional or psychological struggles.

The word disability seems to hold a negative impact. Whereas, in the past, the word handicapped was widely used, then disability, now special needs is being used more easily. The dictionary defines disability as “a disadvantage or deficiency, especially a physical or mental impairment that prevents or restricts normal achievement.” Separate the word as dis-ability and put special in front and you have special ability.

Defining normal achievement might be impossible. What is normal for one person might be an exceptional achievement for another.

Learning to adapt to restrictions, even as we age, is status quo for many, even without a defined disability. Conditions such as arthritis, osteoporosis, insomnia, diabetes, depression, and knee and other joint problems all create some sort of need to change how things get done.

Besides medication, it might mean physical therapy or special diets. But I am convinced, since our bodies will never be perfect, that we all struggle with some kind of deficiency, or lack of ability to operate at full speed. Call it disability, if you will, because we are not performing at optimal ability.

At the 10-year ADA anniversary celebration, U.S. Sen. Bob Dole said, “Disabilities do not discriminate. At any moment, anyone can become disabled.”

He knew this personally as he became disabled with a serious war injury. His recovery was slow, leaving him without the use of his right arm. He said a doctor who treated him “inspired me to focus on what I had left and what I could do with it, rather than complaining what had been lost.”

Those of us with disabilities with a medical diagnosis do just that: focus on what we can do, not what we cannot.

Many of the outcomes of the ADA are good for society as a whole. Ramps and curb cuts allow everyone to cross a street without stepping off a curb; automatic doors, and ramps into these same doors, make entry into any building a breeze. And if we find our physical or psychological needs changing, we know we can safely talk with our employer to accommodate us, even for the short term.

Thank you to the unsung heroes who stepped forward for those who could not.

 

Baseball field fulfills special sports dreams

Day by day

Baseball field fulfills special sports dreams

By LIZ THOMPSON
June 22, 2015
ThisWeekNews.com

Playing baseball and cheering your team on from the dugout or bleachers is a dream of many young people.

Omar Berete, 16, of Grove City, is one such boy. “My nickname is OB. I love to run the bases!” he said, smiling.

Crystal Carter, 15, of Galloway, said, “I keep playing hard, just like a baseball! I’ll never give up till I get a home run!”

In 1950, the very first Central Ohio Little League team was formed in Grove City. The Lions Club was the original sponsor and 65 years later continues in that role.

“Some of us played in the Little League in the 1950s and got help. We are giving back,” Ron Gabriel said.

Along with Gabriel, Jack Widner, Larry Thomas, Jay Pozz and Jimmie Harris all played and still play today, only in a different way. These men are members of the Grove City Little League Executive Board.

Gabriel said there are a lot of children who need a lot of help. These children have special needs. Omar and Crystal are two of many.

The Miracle League, started in 2000, allows the fulfilling of children’s dreams to do the typical baseball moves that thousands of children perform. Boys and girls who need assistance physically to walk and move, whether by canes, crutches, walkers or wheelchairs, are able to play baseball and feel the thrill of the game.

Using a buddy system, these children get to swing a bat, round the bases and, hopefully, score. The majority of buddies are siblings and parents of the children. Otherwise, All Star ball players make sure the children move safely about the field.

Lexi Spohn, 10, of Grove City said, “I love playing ball with my buddy!”

“The children have nicknames and get excited when they hear it called over the PA system,” Widner said.

Zach Attack, better known as Zachary King, 20, of Columbus, said, “I love hitting the ball!”

Currently, there are Miracle Fields in Dublin, Zanesville and Cincinnati. But this summer one is being built in Grove City. Right now, the closest Miracle Field for Columbus and surrounding areas is Dublin and it is swamped with kids playing.

“We are members of the Miracle League but we chose to call our field the Dream Field,” Widner said. “We have kids from all the suburban neighborhoods around Columbus. We have children from as far as Ashville, Circleville and Chillicothe. We get calls from all over and recently a resident from Madison County called hoping to have kids play.”

Widner told the caller they don’t turn anyone down but all must abide by the rules. There is a committee that is responsible for the field and all aspects of the operation.

The executive board has been told that at least 250 children would play at the new Dream Field. The season lasts from 12 to 14 weeks, one to two days a week. When the special needs children aren’t using the field, it will be open to T-ball players.

“We want to fill the void to give special needs kids a chance to play organized baseball,” Gabriel said. “There are so many children wanting to play. There are no losers, only winners.”

That includes players such as Joshua Johnson, 21, of Columbus who said, “I love to hit!” and Haylee Shaw, 15, of Grove City whose aunt, Ashley Valentine, said she looks forward to it every month.

Grove City’s Dream Field is being built at Windsor Park and is fully accessible. The parking lot was built first, followed by the concession stand, and plans are to have the field completed by the end of June and open in July.

To make the field safe and smooth for people using mobility aids, it takes three semitrailers full of tires to make the tiles.

“It costs about half a million to build the field,” Widner said. “The Little League’s portion is $252,000 and Grove City is paying the rest, which is the entire infrastructure.

“It’s important to note we are doing this with all private funds, no tax dollars. The community has been fantastic.”

Organizations helping include: Community Club, Lions, Noon Lions, Rotary, Sertoma and the Women’s Civic Club of Grove City.

The Miracle League brochure says it all: “If you build it, they’ll have fun.”

Curtis Greczyn, 22, of Grove City, fist bumps his buddy and said, “fans and friends” make it fun.

To donate funds, call Widner at 614-906-6500. For more information, go to gclittleleague.com and miracleleague.com/history.

I am only one…

“I am only one, but I am one. I can’t do everything, but I can do something. The something I ought to do, I can do. And by the grace of God, I will.” Edward Everett Hale, American Clergyman and writer 1822-1909

This quote was in a memorial service program of a woman I grew up around the corner from in Westerville in the 50s and 60s.

I read about a woman who was employed in her adult life as a housekeeper in the White House. Each day she cleaned the Oval Office, she knelt and prayed for the president.

A small thing? Time wise, yes, but powerful .

One person, one prayer, something each of us can do. Maybe not in school any longer, but silent prayers are heard as well.

We all need kindness. Often the simplest act can make our day and these are typically done by one person. Someone opens the door for us, and smiles. A neighbor leans over the fence with a bag of red tomatoes (and probably zucchini!) from their garden. Somebody walking down the street replaces windblown garbage can lids. A friend calls to say hello. We receive a letter from our grandchild.

It doesn’t take much to make a person’s day a little brighter.

I always believed God let me become deaf for a reason. He allowed my two cochlear implants to restore my ability to hear clearly for that same reason: To enable me to listen and show His love one person at a time.

Reading the quote above, I know I can’t do everything – and don’t really want to – but it’s not all about me. No matter how small, or seemingly insignificant, I believe God is the orchestrator and someday it will all make sense.

Meanwhile, during these turbulent times in our country, each of us can do something. One day we will learn how the dots are connected and see the whole picture.

Music unlocks many emotions

Day by day
Music unlocks many emotions
By LIZ THOMPSON
ThisWeekNews.com
Tuesday October 7, 2014

When I was invited to a hymn sing at an assisted living home, I asked, “What hymns are you singing?” and was thrilled with the answer.

The list included what I call old, familiar songs such as Amazing Grace, When We All Get to Heaven, Love Lifted Me and a childhood favorite, This Little Light of Mine.

I was also glad I would be sitting with the residents and not leading the singing. My singing voice went south in my mid-40s when I was almost deaf, a condition that happened gradually since childhood.

Music and singing was my fervent hobby, and I often led singing at such places while playing my guitar. I had missed it and realized this particular day that, in part, I had been missing the contact with people who love visitors and music.

After two successful cochlear implants, I had hoped for restoration of my ability to grasp music, but it didn’t quite happen as I hoped.

I can understand most vocalists’ words — if they actually enunciate and sing, not what appears to be screaming into a microphone — but new music melodies are like a foreign language and quite flat.

Am I sad about that? At first I was, but my restored ability to understand speech and sounds with clarity superseded any sadness. Going from deaf to understanding about 95 percent is nothing to sniff at and I’m thankful beyond measure.

Back to music.

To my joy, 40-plus years of music are stored in my brain, and heart I believe, as music memory. If I see the words and get the first note of a song, or have the music to read, I get it and can sing.

My voice is no longer one for performing but I don’t mind singing at home or in groups. When my grandchildren were small, nothing stopped me from singing to them as I know I was sung to by my mother and grandmothers.

I can still hear the beat so my foot taps, hands clap and my soul is soothed.

Remember the show Name That Tune? Often I knew the tunes in two to five notes. So you can understand my music memory is full of good songs such as hymns, music from the 1930s (thanks to my parents) through the early 1990s that includes folk songs, show tunes, camp songs, pop, big band, songs I composed and more.
It’s a true blessing and I’m glad my brain has a lot of good information stored for easy access when needed. I don’t even need to select an app to get at it. I only need to think of a song or hear a familiar tune.

After my recent column on memory, a reader, Dana, told me about a movie that was, at the time, showing at the Drexel Theatre called, Alive Inside: The Story of Music and Memory .

To my chagrin, I didn’t move fast enough to attend and it has moved on to another city. Looking on the website, musicandmemory.org, I learned that music has proven to reach people with Alzheimer’s.

Not a surprise. Many memories are locked inside all of us and we need something to turn the key. In the case of music, it often unlocks memories and emotions for me.

When at the hymn sing, a woman in her 90s held up her forefinger and waved it back and forth when we sang This Little Light of Mine. I joined her in the motion and smiled remembering doing that as a child and when I taught my children the song.

Music can bring tears to my eyes from the message or a melancholy memory often marking the passing of time in my life.

After my first implant, my audiologist told me about HOPE Notes. According to the program’s website, http://hope.cochlearamericas.com/listening-tools, it is a “program uniquely developed for cochlear implant and hearing aid users designed to help improve music perception and appreciation using original songs, traditional folk, blues and country styles and some familiar tunes played in unexpected ways.”

Using both visual and auditory cues, it reminded me of how I heard music, and it improved my ability to enjoy it more.

The man who developed the program is a musician with cochlear implants. So often, adversity brings a gift and he shared his gift with others in a similar situation.

Next time you sway to a familiar tune, “count your blessings, name them one by one …”

Health is a gift…

Day by Day
Health is a gift that should be appreciated
By Liz Thompson
ThisWeekNews.com
Wednesday July 16, 2014

Accidents happen. Life can change in the blink of an eye.

“Health and where you live is important because you need to know what you can control. Because pretty much everything else is out of (your) control,” said Brad Eldridge.

“I just want to be an average guy. Be a taxpayer.”

He said his aspirations are to serve people.

As a lay counselor for the Vineyard Church, he does just that. He knows firsthand about challenges.

“As a counselor, I see fighting about differences. Everyone has a human history that has far more similarities than differences,” Eldridge said.

In the early 1990s during a fraternity initiation at Otterbein College, the pledges were told to dive across the mud. Eldridge was a competitive diver and did a traditional tuck of his head and dove.

His life changed in a moment. He became quadriplegic.

Now 42, he has learned to adapt to a world that’s not built for him. Years ago, he moved to Creative Living near Ohio State University in a space that is built for him.

Eldridge considers himself a minimalist.

When he thinks of the beautiful buildings on the Otterbein and Ohio State campuses, he cringes to think of changing that architecture for a ramp.

“I never had the ‘take me through the front door’ mentality; it never made sense to me. I don’t care if I go in the back door (if the access ramp is there), just get me in the door.”

The Americans with Disabilities Act was signed in July, 24 years ago. Among other things, the act required buildings to be more accessible for people using wheelchairs.

“People tend to be insecure and get angry. I don’t get angry. Frustrated, yes — but I don’t waste energy on anger,” Eldridge said.

The last 18 months, he has seen life from his bed instead of his wheelchair while dealing with cancer treatments and pressure sores. Pain is a constant companion.

“I have to rise above the pain. I don’t want it to regulate my life,” Eldridge said. “I ran cross country and that’s about keeping pain at bay. So I was prepared long ago for this. I’m not real sure how I’m able to deal with this, but I just am.”
His faith challenges and sustains him. He doesn’t want to sit on the bench while other lives go on.

“I decided I’m done with this (focusing on pain) and have to move on. Get busy however I can.”
Science offers hope for people with paralysis.

Neurobridge inventor and project lead Chad Bouton of Battelle says, “Indeed, there is hope with science. I’ve spent my career at Battelle specifically because our organization was created with the charter of using science to benefit humanity. It’s something we still take seriously today and it’s something that is personally important to me.

“When I started working almost 10 years ago in the area of neurotechnology, I knew the possibilities could change the world. Today, with my team, we are still working as hard as we can to bring that to reality. We have a long way to go, but certainly we’ve made a lot of progress and hope one day our Neurobridge technology can help people living with paralysis every day.”

Ian Burkhart, 23, of Dublin, was the first to receive the Neurobridge, and with the intricate technology was able to move his fingers for the first time since he dove into a sandbar four years ago and became quadriplegic. Even though there is no personal benefit to him at this point, being part of this groundbreaking procedure was an honor.

The doctors and researchers kept Burkhart completely in the loop throughout the process. He said he knew that technology would come along, but he couldn’t sit around and wait for it. Eldridge was grateful someone took on the challenge — both Battelle researchers and Burkhart.

“This is how it is right now and I make the best of it,” Burkhart said. “Having the right attitude affects everyone.”
A former lacrosse player at Dublin Jerome High School, Burkhart now coaches boys lacrosse at his alma mater.

“It is often said that you don’t appreciate what you have until it is gone. Many people forget that their health is the most precious gift they have,” said chiropractor Peter Feldkamp.

At the end of the day, Burkhart and Eldridge agree that who you are as an individual is not just the body, it’s so much more. They are living proof.