Preserving What’s Left: The Story of Carol Taylor

An object doctor. That’s how Carol Taylor describes her former job as a historical documents conservator. Carol was so good at her job that she spent many years working in the conservation department of the Library of Congress. She met her husband there (he is a paintings conservator) and they moved to South Carolina, an area rich with historical documents, to open a private business together specializing in meticulously conserving artifacts.

“I was like a mechanic or doctor, in that I knew what an object was made of, how it works and how to put it back together. I loved the focus my job required and that I got to work with my hands on a daily basis.”

All it took was one scary moment to turn Carol’s world upside down. While riding her bike one morning, she was hit from behind by a motorist. She only survived because she was wearing her helmet, but when she woke up in the hospital it was an entirely new world. The hardworking mom of a first grader, loving wife, artist and business women woke up with memory deficits and very little brain function due to the severe traumatic brain injury she sustained. Memories of family members and friends were gone, along with the basic life skills that had become second-nature.

It was clear that Carol would be out of work for a significant amount of time, though she hoped to return to her career one day. Her husband began reading about Social Security disability insurance (SSDI) and assisted her in beginning the process of applying. After receiving her first denial, they sought the assistance of an attorney.

While applying for benefits, Carol was also trying to rebuild her life. This MFA-educated professional had to do her son’s first grade homework with him in order to regain reading and arithmetic skills. After years of therapy and rehab, Carol is now able to perform basic tasks, but requires naps every few hours as even basic brain function exhausts her, and she no longer has the ability to focus or the mental capacity needed to perform her much beloved conservation work – or any work, for that matter.

That realization has been devastating. Not only was Carol’s family missing a huge portion of their income due to her being out of work, but, as she describes it, “every day is an enormous challenge; I wake up not knowing how much of my brain capacity I’m going to have that day. I had to be reintroduced to my family members because I had no recollection of them. Everything I knew was just gone.”

It took 55 long months and multiple denials, but Carol was finally approved for the disability benefits that she had been paying into for the years that she was able to work. Carol credits the relief she feels to her lawyer. “I feel that I’m able to contribute to my family in some small way now, and it is good to know that my disability is noted. My lawyer gave me back a piece of my life so that I can spend my limited brain energy focusing on my son and my family, instead of worrying about paying the bills.”

While Carol Taylor had to say goodbye to a career and a life she truly loved, she now has a small measure of stability thanks to her Social Security disability check every month and her Medicare coverage – ensuring she gets the consistent medical treatment she needs without the worry of financial ruin.

Struggling for Stability: The Story of Carmen

After a long career as a civil service employee supporting the legal system, somewhat ironically as an investigator who spent her days looking back to people’s work history and medical records to support court cases -  Carmen spent many years battling the federal government for disability benefits. Due to a combination of conditions that caused a chronic pain syndrome, Carmen was forced to cut-down her working hours to part-time and then eventually resign when the pain grew too intense to perform her job. She always hoped to someday return to the career she loved that added value to her life.

With Carmen out of work, her husband was the sole breadwinner, trying to pay her $800/month health insurance premium, and keep the family afloat. Always in pain, Carmen felt like a burden unable to contribute to the family’s earnings and unable to make social plans or enjoy life. Having watched her first husband die of cancer, she knew how difficult it was to live with someone in pain and she hated the thought that now she was the cause of such anguish.

To make matters worse, no doctor could figure out what was wrong with Carmen, and she had a hard time finding a pain specialist that would take her insurance. Many of her medial procedures, such as MRIs and CAT scans, missed the source of nearly all of her maladies.  As a result, she was denied Disability Insurance Benefits.

Fast forward three years - Carmen has exhausted her three-year limit on COBRA coverage and her husband is also out of a job. Having exhausted all the family’s savings, and with her Disability Insurance claim still on appeal, she finally decided to apply for Supplemental Security Income in the hope that it would come through and she’d receive health coverage through Medicare, a hard decision that left her feeling like she had given up on herself, as she’d never been on any assistance program. While waiting for those benefits to come through, she and her husband lost their home, due to the mounting financial problems.  However the stress took its toll on their relationship and for a time, she and her husband separated.

Thankfully, he was able to find a new job – halfway across the country from their family – and they were able to work through their problems. At that time, Carmen was then approved for Supplemental Security Income, although her original disability claim was still on appeal.  After many years of chronic pain, Carmen finally was under the care of a pain specialist and had a diagnosis for her condition, including genitofemoral neuralgia and saphenous nerve entrapment which caused her severe pain, as well as depression.

Nine long years after the onset of symptoms, Carmen won her Social Security disability claim and will soon draw on the benefits she earned while employed for so many years with the U.S. District Court. When the decision in her case was made, she called her mom. “I called my mom (and everyone I knew) to share the good news. It had been so many years since I had anything good to share.” Now, though benefits are modest, Carmen knows that her future is insulated against future catastrophes.

Now What? A Craftsman’s Work Cut Short: The Story of John

John knows suburban Washington D.C. He knows it well, partly because he was born and raised there and has lived there all his life. But even more than that, John, age 62, knows it because he’s helped build many of the homes in the area. A true craftsman, John and his brother installed windows and doors on countless homes for more than 40 years, and because of their expertise and careful eye, they got a reputation for being the best in the business. In fact, this duo would often get calls to install $50,000 doors on multi-million dollars homes in the surrounding suburbs.  “You can’t cut corners in this business, and we were very good at our trade – we enjoyed the gratification of a job well-done.”

That all changed when John collapsed on a job site, breaking multiple bones. After he healed, it was right back to work. Then it happened again, and he sustained a head injury and bruised ribs. When it happened a third time, John knew something was very wrong. After multiple doctors visits, it was determined that he had syncopy, causing his blood pressure to drop down to virtually nothing very quickly, resulting in a powerful fall. Unfortunately, that was only the tip of the iceberg, as doctors also found a previously undiagnosed heart condition, in which John’s heart can’t keep the same beat rhythm, beating either much too slow, or much too fast. John was told to stop work immediately and indefinitely – physical work was much too dangerous now, as his heart can’t keep a steady beat.

Now what? John had gotten up every morning for 40 years, carpooled with his brother and mugs of coffee to the day’s job site, spent their days up on scaffolding handling tools and large equipment. Now, due to a very real possibility that his heart can give out at any moment, he cannot do any physical labor. The adjustment and realization of his new reality was crushing, to say the least.

John had no idea how the Social Security Disability Insurance program worked – he had never been on unemployment, never had any kind of assistance. Now he was in a waiting game hoping for benefits to come through, while living with no income of any kind. With no income, he had to neglect repairs to his home (causing water to rain in, creating severe mold damage), turn off his heat in the middle of winter, rely on friends to eat and often ask his brother for $10 in gas money to get to and from doctor’s appointments.

After more than 35 months, John was approved for Social Security Disability benefits. “My benefits check gives me something to look forward to every month – I know that I’ll be able to eat and that I’ll be able to stay in my house for another 30 days.”

So while he feels relieved to have a small measures of stability, John’s problems aren’t solved. Most upsetting for John is the fact that he can’t do the repairs needed to make his home livable again.  “I’d love to go out there today and work! But now I have to get someone else to work on my house, which is what I did for years. I used to do it, I know I could still do it, but because of my condition, I can’t.” His daily routine is also vastly different from what it used to be, now consisting of short, slow walks around the house and short trips into town for groceries and doctors appointments. Through it all though, John holds out hope that one day his heart will get strong enough so he can do one of the simple activities most of us take for granted – mowing his own lawn.

For more information about the National Organization of Social Security Claimants’ Representatives, visit www.nosscr.org. To speak with a NOSSCR representative, please email us at nosscr@nosscr.org or call 201-567-4228. 

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