At 43, Tanya Harrington learned to live life to its fullest, even with the limitations imposed upon her from the debilitating disease, Multiple Sclerosis (MS.) However, an emergency hospital visit in 2006 would cost Tanya almost everything she had, and change her life in ways she never imagined.
Tanya was thirteen when she had her first of many experiences with a racially biased healthcare system. It was 1976 in Hillside, New Jersey. Tanya was in the 8th grade when her neck began to swell drastically, she began losing weight, her eyes seemed to pop out of her eye sockets, she was unable to sit still, and she began to exhibit mood swings at an alarming rate. One look at Tanya, and anyone could see what was happening to her wasn’t your typical case of teenage hormones. However, when Tanya’s mother took her to the doctor’s for observation, her mother’s concerns were dismissed.
In fact, one doctor brushed off Tanya’s bulging neck goiter, saying, “Oh, there’s nothing to worry about. Some teenagers just have big necks.” It would take another two years for Tanya to get an accurate diagnosis and to begin the treatment she needed. She would ultimately become one of the youngest people at the time to be diagnosed with hyperthyroidism. This is also when Tanya learned that Black girls were the medical community’s favorite test subjects.
“When I was finally diagnosed, my symptoms had become much worse. I hated the way I felt. I couldn’t explain why I’d be fine one minute, and then so angry the next. At first, the doctor’s didn’t take me seriously. However, once I was diagnosed, they were very interested in me, but not for the right reasons. To them, I was someone to study. They had never seen a girl so young develop hyperthyroidism, so, while I eventually got a thryoid removal surgery, I often felt more like a specimen than a patient while they were treating me.”
After receiving treatment, Tanya would heal, and began to resume life as normal. A talented artist and aspiring fashion designer, Tanya would go on to graduate high school at the top of her class and was even listed in Who’s Who in American High Schools in 1981. However, a pregnancy during her first year of college forced Tanya to make the tough decision to leave college and transition into her life as a young mother.
As a young mother in the early eighties, life was challenging for Tanya. Being financially unstable and in an abusive relationship with her child’s father made things even more challenging. However, despite the many obstacles in her way, Tanya’s intelligence, tenacity, her love for her children, and her eventual courage to leave the relationship that had the potential to kill her would prove to be exactly what she needed to find her path.
“I made a lot of poor choices as a young mother. However, my love for my children never wavered. I also refused to have my children grow up seeing how toxic my relationship with their father was. When I made the choice to leave, I finally felt free. With the support of my family, I was able to find my way, and without a college degree, I learned how to use my intelligence and advocate for myself to get the jobs I needed in my pursuit of financial stability.”
It was in 1985, shortly after the birth of her second child that Tanya found herself facing yet another obstacle. What started out as as a small, black dot in her left eye’s line of vision, began to grow bigger and bigger, until Tanya could no longer ignore it. She was losing her vision. Once again, Tanya would find herself at the mercy of medical professionals who were more interested in studying her than treating her. After an exhausting series of prodding and testing, doctors suspected Tanya’s symptoms were a result of Relapsing Remitting Multiple Sclerosis.
During the 1990s, the American medical community devoted a lot of attention to studying the brain, and because Multiple Sclerosis is a disease that affects the brain and the spine, specifically the nerves within the central nervous system, a lot of attention was given to understanding the disease. However, as a poor, single mother with limited resources, the attention given to Tanya was more science focused as opposed to care focused. If Tanya wanted care, she had to agree to studies and testing, many that provided no improvement to her condition. In addition, none of the doctors’ efforts were directed toward providing her with the critical palliative care she needed. This is significant, because as a young woman suffering from the sudden onset of vision loss due to MS, followed by severe facial noralgia, Tanya’s ability to cope and transition to a new way of living wasn’t prioritized. She would learn quickly that she’d have to navigate the disease on her own.
Still, Tanya perservered. She continued working and providing for her children, often working two jobs at a time. Eventually, she married and relocated from New Jersey to Pennsylvania to provide a better environment for her children. Even with severe vision loss, professionaly, Tanya began to thrive, working in the social services field as an advocate for disadvantaged populations. However, througout it all, her health continued to deterioriate and she still didn’t have a formal diagnosis. Finally, in 2000, she was able to obtain private health insurance through her job, and was given a diagnosis. As doctors had already suspected, Tanya had Multiple Sclerosis.
Receiving a diagnosis was significant for me because I became eligible for disability benefits in the case I no longer was able to work. However, it was never my goal to stop working. I enjoyed the work that I did and becoming eligible for social security disability benefits only served as assurance that I’d still be able to provide for my family should my health decline further.
After receiving a formal diagnosis and gaining access to better medical care, Tanya’s health began to improve a little bit. Her family grew by three more children to a total of 5, and it seemed that while not perfect, life was a little more manageable…until it wasn’t.
At only 43, Tanya wasn’t ready to give up. She took a medical leave of absence from her role as a transitional housing case manager for a local community organization that services low-income women and children, and entered into an intensive rehabilitation program. She began to make progress, and was able to regain her ability to walk with the assistance of a walker. Unfortunately, as she started to make progress, she developed a case of bacterial pneumonia. For a person like Tanya with a compromised immune system, pneumonia can be devastating. However, while it was suspected Tanya had a serious infection, instead of transporting her to the hospital to get proper treatment until she could return to the rehabilitation center, the medical team chose to try and treat her there. They did not have the proper facility or care team for that kind of treatment, however, and her condition worsened.
The way Tanya’s insurance worked, when you’re in a rehabilitation center, there are only a certain amount of days allotted for rehabilitative care. The medical team at the rehab center was more interested in ensuring they received the maximum amount of money from the insurance company by keeping her there, as opposed to what was in the best interest of Tanya, which was getting her to a hospital. This resulted in Tanya’s condition becoming nearly fatal.
Eventually, Tanya’s oxygen level became dangerously low due to her body’s inability to fight off the infection, and the medical team had no choice but to call an ambulance. Tanya was rushed to the hospital. It’s important to note that the hospital she was sent to was part of the medical network she belonged to, and one that she’d been to several times. In fact, all of her doctors were a part of the same network, so her patient information was already on file and the hospital was prepped for her case before her arrival.
However, as Tanya arrived at the hospital she began to lose consciousness due to her oxygen level being so low. Without checking her files for any allergies, the doctors gave Tanya a dose of penicillin to try and treat the pneumonia. But Tanya was allergic to penicillin, an allergy that was on file and the doctors should have known about. Due to their negligence, the penicillin caused Tanya to go into anaphylactic shock while in an already compromised state, and her body couldn’t cope. She would suffer a stroke and enter into a coma, where she’d remain for a month while her body did its best to recover.
When Tanya finally came out of the coma, everything changed drastically. She had a breathing tube in her throat, and she was unable to speak because of it. Tanya knew at that point that some of her worst fears had become a reality, and she was uncertain about what her future held.
Due to avoidable mistakes made by several members of the medical teams to whom she entrusted her care, Tanya’s condition as it pertains to her inability to walk had become irreversible. Her lungs were weakened and she would remain on both a breathing tube and a feeding tube for another year. Eventually, Tanya was transferred to a skilled nursing facility at the age of 45, where she was initially told she’d remain indefinitely.
With all that she’d gone through, and with a doctor’s prognosis that she’d likely only have a few years left to live, Tanya was not ready to give up on herself, and neither was her family. To her doctors’ surprise, Tanya was able to get off of the breathing tube. She then endured a year of physical therapy and occupational therapy, with the goal of regaining as much of her independence as possible. While she accepted she’d likely never walk again, Tanya was determined to return home via an independence waiver from the state, where she could be cared for at home. In 2009, Tanya’s hard work and advocacy for herself paid off, and while immobile, Tanya was granted an independence waiver, and was able to return home to her family and receive in-home nursing care.
I’d be lying if I said losing so much of my independence wasn’t challenging for me. While physically, my body experiences a lot, psychologically, having to rely on someone to feed you, bathe you, move you, help you to use the bathrooom, and do everything you’ve been so accustomed to doing for yourself is something I wouldn’t wish on anyone. Not only can I not just get up and go when I want to, the stroke took away alot of my upper body stregnth, so when I say I’m immobile, I really am in every sense of the word. However, I still have my mind. My mind is strong and I’m committed to using it and challenging myself, and living out my life to the fullest.
Once she was home, Tanya refused to let her circumstances get her down. Life had changed for her drastically, and suddenly, the once independent woman had to rely on others for nearly everything. However, Tanya was determined to adapt. She was even employed for a short time, working as a disability advocate for a non-profit organization, and she even returned to college to pursue a self-designed degree in social activism with an emphasis on advocacy for differently-abled people. At 59, she is still in school today, and she currently has a 3.91 GPA.
Sadly, in 2020, the pandemic proved to be a whole new challenge for her. Her husband, who was a major source of income and support for her and her teenage son, was admitted into a skilled nursing facility due to symptoms from diabetes, and he would unfortunately pass away in November of 2020. Tanya hadn’t been able to see him since he was admitted to the facility due to the lockdowns and both of them having compromised immune systems. She would only get to see his face once more at his funeral.
Another challenge the pandemic presented to Tanya was a lack of consistent, reliable home care. With many home health aides choosing not to work, Tanya found it difficult to retain someone to care for her in her home. While her children have stepped in to fill shifts, continuing this way is not ideal. In fact, due to the lack of consistent, skilled care, Tanya is now dealing with a severe bedsore which she has had surgery on several times. Needless to say, immediate change is neccessary if she wants to regain a reasonable quality of life.
Thankfully, Tanya has a daughter in Virginia who can provide a stable housing situation for her, but Tanya needs help to get there. Since Tanya’s benefits are based in Pennsylvania, there will be a gap in her medical coverage while she applies and waits for coverage to be reinstated in Virginia once she relocates. It is unfortunate that in 2022, there are no services available to help disabled people transition from one state to another without an interruption in their medical benfits. This is a serious problem and one legislators should really devote more attention to.
Losing my husband so soon was something I never could have prepared for. He was my best friend, one of my strongest support systems, and my companion. However, I know he wouldn’t want me to give up. My goal is to get to Virginia, spend time with my daughter and her family, obtain my degree, and live in peace. That’s all I want and I truly think I deserve it. I deserve peace and I deserve rest.
Ultimately, while differently abled, Tanya is a valuable member of society. She is intelligent, business savvy, and a caring human being who has devoted the majority of her life to helping others. She is a mother and a grandmother with a lot of life left, and your contribution will help her pay for her relocation and medical expenses as she moves to Virgina in an effort to regain her quality of life at home with her loved ones. Please consider donating to her GoFundMe below and share her story. Every little bit counts.
We wish Tanya the best as she navigates this next step in her journey, and we’re confident that she’ll continue to achieve all the goals she sets for herself.
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