Thursday, July 2, 2015

ALS--Teresa's Journey

                                       " I feel like Alice in the book, Alice in Wonderland when she said,                                          
                                 'I fell down a rabbit hole,                                   
I can't go back to yesterday because I was a different person then.'"
--Teresa Gray


Fifty six year old Teresa Gray was diagnosed with ALS—Lou Gehrig’s disease in November, 2013. I asked her if she would tell me about her journey and she graciously agreed. So I sat in her beautiful living room surrounded by the things she loves—pictures of family members and friends. There were books everywhere and momentoes of trips and special treasures she had picked up along the way. Outside hydrangeas and flowers bloomed. Somewhere in the distance a bird sang. We were surrounded by life—her life.

Teresa opened up her heart and told me her ALS story. She had been a Middle school school librarian for 9 years and loved introducing her students to books. And after the doctors gave her the terrible news they told her to get her affairs in order. Teresa said, “Remember Lewis Carroll’s Alice in Wonderland? I feel like Alice when she fell down a rabbit hole and said, ‘I can't go back to yesterday because I was a different person then.'''
Teresa Gray's journey through her rabbit hole started over two years ago. On July 4, 2013 she said her lips felt numb and she had a hard time trying to blow up balloons for a party. Her family began to notice that she tended to cough and clear her throat after she ate.  Then in November she ate a small piece of apple, and  it became lodged in her throat and she could not breathe. Her husband pounded on her back and she began to breathe again. 

The incident scared Teresa enough that she saw her internist who called in a specialist who ran a multitude of tests.  Every test came back normal except swallowing was difficult. Looking at her last test the Doctor told her it looked like she had ALS. “If was as if the air in the room had been sucked out,” she said. Teresa knew that ALS was a progressive degenerative disease . Eventually these victims are robbed of their ability to move, speak, swallow or breathe. She knew there is no cure for ALS at this time.
So her journey began. There would be a multitude of doctors. ALS patients are treated by neurologists, gastroenterologists, pulmonologists, speech and physical therapists. Those first days of diagnosis were filled with appointments.

One of her first questions was: Should I tell everyone outside my family? She opted to tell. Teresa wanted people to pray for her and let them know what was going on in her life.

Teresa found that most of her symptoms centered around swallowing which grew progressively worse. This was followed by an overwhelming sense of fatigue as her muscles slowly began to die.

That Spring her Principal suggested that the students raise money for ALS instead of the usual charity. Teresa spoke to the school assembly and told them about her illness. After that program a long line of the students formed around her to hug her, to say they would be praying for her and hoped she would get well soon. At the school's fundraiser they raised nine times more money than they had ever raised for any other group.

 Teresa refused to become an invalid. She began to lend her support to the Greenville Hospital System's dream of building an ALS Center in Greenville. There was no center in South Carolina and ALS patients had to travel to Augusta or Charlotte for specialized treatment.  An ALS Center in Greenville would provide one room where specialists come to the patients. As ALS patients become less mobile it becomes very difficult to travel long distances for treatment. Over 30,000 people live with ALS in the United States and 5,000 more join their ranks every year. Wade Hampton High School in Greenville donated  $226,000 to the Greenville ALS project during their Spirit Week. The young people in her church raised money for this same project during Super Bowl Weekend.

Over that summer Teresa realized that she would have to leave the teaching job she loved so much. But she did return that fall to say goodbye to her colleagues and students.

Fatigue continues to plague Teresa.  At Christmas dinner with her family some food lodged in her throat and she could have died. Her swallowing mechanism was breaking down and in January she knew it was time for a feeding tube because swallowing was so difficult and dangerous.

Teresa said she has no bucket list except life. I asked her what helped and she reeled off a long list.  She joined a Prayer group which became most meaningful. She draws strength from her supportive family and many friends. She attends a weekly Healing service where a priest anoints the sick with oil and calls out their individual names in prayer. Teresa said that her own church has surrounded her and her family.

She has been interviewed by The Greenville News, she has been on several TV programs—telling her story. Several videos have featured Teresa and her journey. She said that Social Security and Disability insurance helps a great deal—but those affected should apply early because the waiting period could be long.  

Teresa’s list of what helps continues. She tries to live every day to the fullest. She says she does not think of ALS all the time as she first did when she was diagnosed. But she does know that one day there will come when ALS will invade her life further.

Despite this difficult illness, Teresa is grateful for many things. Washing her hair. She can still walk, type, read
and she continues to be thankful for every day and all the things that she can still do. She serves as a Deacon in her church.  Her husband David gave her a pendant that reads: “one day at a time.” Teresa said, “My husband cooks when I am tired, tucks me in if I fall dead asleep from fatigue. He looks after me. I am so fortunate for David and my immediate and extended family and all those people out there that pray for me.” She cried as she said, “I want to live long enough to see my son graduate from college and hold my grandchildren.”

Like Alice in Lewis Carroll's book, she already knows that today and the days to come are very different from her yesterdays. At 56, disabled but hopeful, she has found a whole new life.

Teresa is wrong about not having a bucket list. Her bucket is filled and running over with life, meaning and hope. She continues to touch the lives of many. She refuses to give up. As I left my interview and drove toward home I remembered something that an Editor of The New Yorker said about a troubled writer named Ross. The Editor said of him, “He just keeps going like a bullet-torn battle flag and nobody captures his colors and nobody silences his drums.”  Those words express the blond-haired woman in Greenville who refuses to give up. No wonder Teresa Gray is a hero for so many of us. 
--Roger Lovette /

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