Owning My Disabilities

 

The Journey

I was diagnosed with epilepsy more than twenty years ago and continued to have seizures about once every six months. In August 2014, I had a grand mal seizure and tumbled down concrete stairs. That is when my life changed forever. Instead of one every six months, it increased to four to six every week. In 2015, after medical testing, I was told I had two types of seizures. I have both grand mal seizures and focal onset impaired awareness seizures. From 2015 to 2016, I spent a lot of time in the hospital for weeks. I had to go through numerous tests and sleep studies to help determine where in the brain my epilepsy was occurring and why. The tests showed that the seizures were happening on the right side of my brain.

The primary seizures I have are focal-onset impaired awareness. This type of seizure is characterized by periods of blackouts. Your body may still be functioning normally and performing its tasks. But you will be unaware of what you are doing. For example, in some of my past seizures, people would say I was incoherent and mumbling words. Other times, I would stare off into space. These are blackouts where you can’t remember anything in a specific period. I have experienced some instances where I didn’t even know who I was or where I lived. They can last for a few seconds to a few minutes. The longest one I have had was ten minutes long. They are not something you want to experience. With every seizure, it feels like I have lost a portion of my life.  

I can remember the first time I had a seizure. It was during a night shift at work. I had a grand mal at another job in front of everyone. I had one on a bus. I’ve woken up in the back of an ambulance, not knowing what happened. The paramedics told me someone found me alongside the road. I have had several at my last job before I became officially disabled.

The First Two Brain Surgeries

In February 2017, I underwent brain surgery twice. The first was for invasive brain testing. During that time, I had a second brain surgery to remove a small piece of my brain. We’d hope that this would put my epilepsy in remission. We thought it was successful, but my seizures returned only months later after surgery. It began to affect my ability to understand and express myself verbally. I had gone through numerous epileptic medications, sometimes pushing the dosage close to the maximum. But none of them have been successful at controlling my epilepsy. From 2014 to 2021, I've had more than 1,500 seizures. I have lost count since then. The worst one was when I had an epileptic event that almost killed me in 2018. It caused both kidneys to shut down, and the doctors had problems restarting them. I spent about a month in rehab, learning to walk and talk again. After the 2018 scare, I had tests in February 2020, and they found that my seizures had migrated from the right side of the brain to the left side. They now occur on both sides of my brain.

The Third Brain Surgery

In 2022, a new treatment was suggested. The current medication was ineffective. We needed to find something that might help. My neurologist provided several choices. One of which was called DBS or Deep Brain Stimulation. I opted for DBS due to the potential success rate. A team of doctors got together and discussed my case. They agreed with my assessment and had exhausted all testing. In January 2023, I went in for my third brain surgery. DBS surgery involves implanting electrodes into the brain, usually in a targeted area. But mine was a generalized target because the where or the cause of my seizures is unknown. I also have a battery implanted in my chest. Now, everyone knows me as Cyborg TMI or the Cyborg mod. It will be interesting to know how future archaeologists will classify me.  

DBS is not a short-term solution. It is a lifetime solution for me. Because this is a new procedure, initial results will be available after one year. However, long-term results will take 5-7 years. It will take time to fine-tune my DBS. The purpose of DBS is to send a programmed electrical impulse for a set charge, interval, and time.

More Medical Conditions

My seizures have led to several more medical conditions. I have aphasia that prevents me from understanding and expressing speech. Although I have learned that other activities can help me recover. But they are not a permanent fix. I also have what is called dysphonia. Dysphonia occurs when a person has difficulty speaking due to a physical disorder of the mouth, tongue, throat, or vocal cords. Sadly, there is no medical fix. The doctors said I most likely will never be able to talk in a normal voice. Trying to communicate with people can be frustrating.

I was also told I have FND or Functional Neurologic Disorder. You can't test FND to confirm or deny it. However, my doctor came to this conclusion after extensive testing that I've had over the years, which excluded other possibilities. There is therapy for FND that could help, but for the rest of my other disabilities, there isn't a medical fix.

Combined with all my medical conditions, it has made it difficult to function in society. Many people attribute these conditions to "how I speak", I have a low intellectual ability. Because of how I sound when I speak, they believe my IQ must be very low. Because of that, people often treat me with disrespect; they treat me as though I am mentally handicapped. So I must not be intelligent. People will avoid me. They don’t know what I have done in the past. And it is far more complex than anything they have done. Unless they, too, made it to the engineering level to solve complex technical problems. I am pre-judged often, which is why I don’t talk much. 

These three medical conditions have made it difficult for me. I cannot stand up for myself vocally. However, I can do it in written form. My neuropsychologist says that I do have weaknesses, and that is in walking and speaking. My thinking speed is a little slower. But I am not mentally disabled or have a neurocognitive disorder. I may process things slightly slower than average. But my intelligence has not been compromised.

Owning my disabilities

It is not easy being who I have become; it is often frustrating. I can distinguish between what is normal for me and what is not. I know when I have a seizure, everything drops below the line for me. I struggle with it all, and it frustrates me every single day. Even my Doctor said to me that she could tell that I struggle with it. All that I wish for is for it to be over. But I also know that it can start right back up as soon as it is over. It's more than a struggle bus; it's a living nightmare. But I live to endure and strive to move on. To believe that I can still be something despite what I am. At times, my brain will cease to function, meaning it fails to process information, and I become confused for a few minutes. It is not pleasant at all.

I constantly remind myself that I cannot worry about the things I cannot control. My seizures and my inability to express speech are things that I cannot control.

So I have to adapt and accept my disabilities. I have to own them even when my disabilities get in my way. I have to learn how to work with them. And strive to continue moving forward. I cannot let my disabilities own me if I want to succeed. No matter what anyone else thinks.