Archives > Opinion > Star Staff
Print
E-mail
Comment
Rate
RSS
Share
Thinking about Sondra
By Patti Pfeiffer
I listened closely as Marilyn described a recent reunion with her long ago neighbor Sondra. She listed only important details, the pinnacle points of Sondra's life. At every turn, I thought there'd be change of course, something happy, bright or positive. It had to get better.
I was wrong.
In Sondra's life things don't, haven't and won't get better. Her past, present and future is best described as a horror story. Her life echoes of a current day, female version of Job.
Assuming it was years away, I asked.
Wrong again.
A senior, she graduates this month.
Born with a rare skin disorder, 75 percent of Sondra's body is covered in open wounds, the severity equivalent to third degree burns. She is one of a mere handful to live beyond age 20. Doctors have said she may be only one of two alive her age.
Her affliction is unknown to most. A genetic disorder, Epidermolysis Bullosa (EB) leads to disability, disfigurement and death. Many infants born with EB often do not leave the hospital; a lot will never see even a single birthday candle. There's no cure or treatment. Unable to adhere to layers, EB renders skin so fragile that friction results in open wounds.
Making it even worse, Sondra suffers with the most severe and rarest among the rare forms.
Of course I wanted to interview Sondra Atkins of Argyle. Upon hearing of my plans hubby warned me against it because of a seemingly endless emotional tsunami pounding away. "Considering what you're been through I don't think this is a good time to tackle something like this Patti," he protectively protested.
"You are wrong, dear. This IS the perfect time."
For two hours one afternoon I sat in Sondra's small living room listening. Without pity, she shared her story, her life, her history. I learned of the daily three-hour bandage changing routine, looked at photos of open wounds currently engulfing her back, saw her wound-riddled face, neck and ears, viewed the bandage-covered knees where sores have failed to heal in eight grueling years, I heard of torturous soakings in vinegar baths every day, necessary to fight infection, to stay alive.
What I did not hear, what was so loudly lacking was complaining -- of any kind, any magnitude. Instead of questioning why, moaning about, Sondra downplayed her terrible plight.
"What are the odds that two strangers, unknown carriers of this rare gene would meet, fall in love and have me? I feel it is God's blessing that I am here and am here for a purpose," said Sondra. "This is my reality and I'm OK with it. I don't think it is fair to say my challenges are any worse than anyone else's. Besides, I love a good challenge."
Her every living minute is just that -- an overwhelming challenge, a monumental unimaginable hell. Earlier this year she was in the hospital for seven weeks, home for two weeks then back again for another month. Medical treatment is limited to antibiotics and attempts at pain management. "I'm planning on staying home for a while. I've got a graduation to attend you know."
Though only present four days a week, her health care provider assists as much as allowed. "I don't think I could go through what Sondra does. One day she had me crying she was in so much pain. There was nothing I could do. She's a strong woman, remarkable beyond words," exclaims Jacque Jackson.
Sondra and Jacque talk about their experiences together. Jacque mentions the TV program Extreme Make-Overs as Sondra waves her off the topic.
I inquired.
Unable to live on her own any longer, a garage next to her parents' home was converted into an apartment a few years back. "It's not ADA accessible and she lives in this thing," Jacque says, pounding the wheelchair arm. "She can't even use the kitchen sink."
At one point a video tape was made to submit to the TV program in hopes her story would out-rate other submissions, a crew would appear and life-altering changes made. "I chickened out," Sondra admits. "I don't know if that's how my life is supposed to be."
"Why not? You deserve at least that," Jacque corrects her.
Sondra asks for little and is in need of much. She worries about money for life-saving bandages, medical care and supplies. Surely she dreams of a pain-free day, a moment even a minute. Her biggest goals are attending her daughter's graduation and someday holding a grandbaby.
My husband was wrong. So very wrong. I needed to meet Sondra. Everyone needs to meet Sondra. She's indescribable. Her attitude is beyond words. Her strength and courage is nothing short of miraculous.
Daily, she comes to mind. When tempted with a complainant I say to myself "TAS" an acronym for Think About Sondra.
Patti Pfeiffer is a columnist for Star Local News, freelance writer and author. She can be reached at pattip913@msn.com
The following are comments from the readers.
In no way do they represent the view of Starlocalnews.com
In no way do they represent the view of Starlocalnews.com
You must register with a valid email to post comments.
Only your Member ID will be posted with the comments.
Only your Member ID will be posted with the comments.
Registered users sign in here:
Become a Registered User
- Return to: Star Staff «
- Home «
- Top of Page ^
