“Epilepsy is more than a tonic-clonic (grand mal) seizure and I want to be a voice for the voiceless”
Makeena was born and raised in a tight knit rural community in South Carolina. She lived with her mom Cheryl, great grandmother Viola and older sister Keyonna. At two months old she was diagnosed with microcephaly, a rare neurological condition. The doctors didn’t give her mother much information other than Makeena would never walk. She proved them wrong and was walking by age three. However, they failed mention it would affect her ability to learn, do simple tasks such as tying her shoes; or more complex tasks such as riding a bicycle.
Makeena spent much of her childhood between hospital stays and doctors. With little information provided by the doctors, her mom was left to do her research and learn for herself. The internet and other resources weren’t what they are today, so she did her best help Makeena navigate life with this rare condition. Cheryl did everything she could to give Makeena the best childhood possible.
Despite the challenges of her condition, Makeena describes her childhood as “wonderful.” She was just like any other child. She participated in church activities, listened to music and watched television. Her favorite shows and cartoons included; All That, Schoolhouse Rock, Disney Cartoons, Rugrats, Looney Tunes, and Popeye. She put an emphasis on how much she “loved Popeye the Sailor Man.” She spent as much time outside as possible raking leaves and working in the garden. She recalled thinking, “I’ll have to do these tasks when get older and live on my own.” She made up games to play with the neighborhood kids and her cousins. She also enjoyed reading encyclopedias, “just because.”
As Makeena approached her teenage years, she became introverted. She was becoming more aware of her condition and what it meant. While her mom was vocal about microcephaly, Mekeena didn’t want anyone to know. She was concerned about how to explain what it was, how everyone would react and what they would think of her. She began using poetry and stories as an outlet. She wrote about the trials and struggles without ever mentioning who it was about. She was guarded when it came to who she let in and what they knew about her.
Makeena started school when she was three years old at the suggestion of her doctors. They thought it would give her a head start and possibly allow her to keep up with her peers academically. Although she started school earlier than her peers, she fell behind. She struggled with her studies, especially math. When she was in the 4th grade she was put in to the IEP (Individualized Education Classes) program. Her progress began to show marked improvement. This trend continued throughout her primary and secondary school years.
When she was 17 her family relocated to Atlanta, Georgia. In 2010, at the age of 19, the school informed her that upon review of her school records, she did not qualify for graduation. The old school district’s IEP requirements did not align with the new district. She appealed their decision. She had passed all required course work and the final test, but they upheld their original decision and she was not allowed to graduate. The stress and disappointment was overwhelming. She had no idea what she was going to do next. She didn’t have a high school diploma. What could she do?
She tried to stay positive and kept going. Her 20th birthday was coming up in a few months and she was excited. A few weeks after the celebration she was lying on her bed. The next thing she remembered was being transported to the hospital in an ambulance. Her mom explained to her that she screamed really loud and then had a tonic-clonic (grand mal) seizure. Makeena was scared, confused and disoriented. She’d never had a seizure before. Her mind began racing. Why? Was it a new symptom of microcephaly or worse; a tumor? Will I have another one? The hospital gave her little information. They gave her a prescription for 500 mg of Keppra twice a day and told her to follow up with her primary care doctor.
After being discharged she began researching seizures and epilepsy. She breathed a sigh of relief when she read that some people have a single seizure and never have another one. During the follow up visit with her primary care doctor he didn’t seem overly concerned and kept her on the regimen prescribed by the hospital. A few months later she began waking up feeling like she’d had a bad dream. She felt drained, confused and disoriented. Her entire body felt heavy and stiff. She assumed it was side effects from the Keppra. Her primary doctor thought it might be fibromyalgia or arthritis, so he referred her to several specialists. Those conditions were eventually ruled out.
Two years later, in 2012, Makeena had another tonic-clonic (grand mal) seizure. This time she was out of town and it happened in public. She was rushed to the hospital, but told there was nothing they could do. She was sent home after being told to rest and take her medication. She continued to wake up with the same symptoms of lethargy, heaviness, disorientation and confusion, but now they were accompanied by dizziness, headaches and extreme pain. Her primary doctor told her he didn’t know what to do and referred her to a neurologist.
Makeena was in the process of obtaining disability benefits so she had to wait a while before she could see a new doctor. In 2014, she had her first appointment with a neurologist. After talking with her and reviewing her medical history, he immediately ordered an EEG and MRI. He told her that the seizures were coming from her left temporal lobe and she was subsequently diagnosed with LTLE (left temporal lobe epilepsy). The symptoms she was experiencing in her sleep and upon waking were tonic seizures. The two tonic-clonic seizures were secondarily generalized. They started in the left temporal lobe and then spread to the entire brain. He also told Makeena he found no evidence of a relation so she had two independent conditions; microcephaly and epilepsy. He increased her medication to help bring the tonic’s under control.
After that visit, things went well for almost a year. In 2015, Makeena had a setback when she began having myoclonic seizures. Her neurologist increased her medication again to 1000 mg twice a day. So far, this has helped. The frequency at which she has simple partials (auditory hallucinations, feelings of false movements, and falling), myoclonics and tonics has decreased dramatically, although not completely. She has some short term memory issues and some other things that occur with epilepsy, but nothing close to what she was experiencing. She has been tonic-clonic free since 2012.
Makeena struggles with the stigma she faces with having epilepsy. People tell her that she’s never going to accomplish her goals, epilepsy isn’t that serious or she’s exaggerating her symptoms. However, she refuses to listen to that kind of negativity. Her response is: “Don’t let whatever you are going through define your life. Don’t use the phrase ‘I can’t’ because anything is possible.”
Makeena fully intends to accomplish the goals she set for herself, regardless of what anyone says. She wants to learn to ride a bike, get her high school diploma, graduate from college, amongst other things… With her infectious laugh, positive outlook and determination to prove them wrong, we know for certain nothing will stop her!
Thank you Makeena for sharing your story… You are an Epilepsy Warrior and it’s an honor to put you in the Purple Friend Spotlight! Keep shining!!!
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