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Living with a Neurological Disorder
There are more than six hundred neurological diseases. These are the mayor categories;
- Infections: Meningitis
- Cancer: Brain tumors
- Seizure disorders: Epilepsy
- Traumatic injury to the brain and spinal cord
- Diseases of the blood vessels and supply to the brain: Stroke
- Degenerative diseases: Parkinson's and Alzheimer
- Problems with how the brain develops: Spina Bifida
- Faulty Genes: Hungington's Muscular Dystrophy
- Ataxias: Movement disorder
Living trapped in a body that would not respond
For most people, getting around, walking or as simple as typing in their computer is just an automatic response to a thought or reaction. When one lives with a neurological condition, normal acquires a whole new meaning.
This is not a medical informational article, is a human experiential piece. For years I have immersed myself in medical data, statistics, professional evaluations and of course, public misconceptions about what is like to live with a body that won't respond as it should. As a former Emergency Room RN, I have seen my share of neurological afflicted patients. I knew even before I went to college that I had a laundry list of health issues. Most of them, I kept secret even from my own family and friends. Yes, I was fearful of the comments ,the unsolicited advice and most of all...pity.
For most people, this condition is like a demon that haunts them. Unpredictable and sometimes violent, becomes the dictator of your daily routine. There are different kinds of seizure disorders. Mine is referred as "unspecific seizure disorder". In other words, they have no clue as to what is the primary cause of the episodes. I learned that the types of seizures vary. Sometimes I don't even realize I had an episode, others I end up in the ER and sleeping for two days at a time.
I can honestly say I hate all the pills I have to take just in the hope of minimizing the number of episodes in a day. In my case, most of the time doesn't work. I have heard how people mock epileptics. If only they knew how frightening it is to lose control of your body and the helplessness that consumes me. I will never consider myself as a disabled person, but the rest of the world reminds me every day. I fight for the chance to be something more than my condition.
Needless to say that my attitude was seeded by fear of the unknown. As my body began to deteriorate in the inside, it became more difficult to control it. The tremors in my hands, the casual jerking of my head, the slurring of my words and the intense pain became my worst enemy. I was fighting an invisible bully that had the upper hand.
When I was told in 2002 that I "probably" had Multiple Sclerosis, I flat out said to the doctor; - "that is impossible". He put down my chart and looked me in the eye and told me to get used to the idea of being in wheelchair in less than five years. Then preceded to read all the symptoms and irreversible damage to my brain, heart, and kidneys that I already went through without me knowing.
I was twenty six when that conversation took place. I was determined to prove him wrong. I was going to keep living my life the way I wanted. What I failed to understand was that it was out of my hands. I was in a deep denial for years, pushing my body and mind to places that I never should. Overworked, over stressed, and not seeking proper care came to a screeching halt when my body said "Enough". My seizures got worse, my muscle and joint pain multiplied, and I was having memory lapses. Everyone knew. So instead of addressing the issue I quit my job, I was too embarrassed.
I found another job as a laboratory Medical Technologist Assistant in a Clinical and Research Laboratory. I was in charge of processing and preparing samples and cultures in the Microbiology Department. When you work in the medical field with so many health care professionals, someone always notices. The sicker I got, the more isolated I felt. Until, I could not do it anymore.
Wow. The shock when a doctor tells you that is best to make arrangements for in home care is unimaginable. I am as stubborn as they come. When it comes to being independent, I will make waves. It's not in my nature to depend on other people. But, acceptance starts in our heart. I may not complain about the pain, the gait, the sensitivity to stimuli, but is still there.
I am aware of my limitations, but I won't settle. It's been years since I was told that I needed a wheelchair. I still can walk. I can feel how my body is being affected, but my heart is stronger than ever. I live, I laugh, I still love to give. So in conclusion, Even if it destroys my body, nothing can cage my soul. Surrender is not in my vocabulary.
Susan talking about her Ataxia
Mrs. Susan Shacka
According to the National Institute of Neurological Disorders and Stroke;
"Ataxia often occurs when parts of the nervous system that control movement are damaged. People with ataxia experience a failure of muscle control in their arms and legs, resulting in a lack of balance and coordination or a disturbance of gait."
This particular symptom is quite disabling. In my case is barely noticeable, but my good friend Susan Shacka lives with it every day. In this video she shares what is Ataxia and what has inspired her to reach others to find help.
Making Huge Strides one life at a time
When normal is overwhelming
What is normal anyway? To me is seventeen different pills. Be aware of my body's warning signs of distress. Not letting depression take hold of me. Be as active as possible, without putting myself at risk of injury. Remain productive every day. Find joy in the simplest of things. Remain positive in spite of any setback. Stay strong for yourself and those around you. Believe that every journey is a pathway to wholeness and compassion.
Do you or someone you know has a neurological disorder?
Changes are difficult. Rearranging your life to fit those changes can be emotionally and physically taxing. But is all part of the new you. Take your time to adjust, and to transition. The moment you start to accommodate to the extras in your life the easier will be to take better care of yourself. Integrate your family and friends, educating them about your condition. You will be surprised how others will react if you let them in and help out.
I was always the caregiver and independent person in my household. Now I have to accept that there are going to be times when I'll need assistance. That is ok. I was very surprised to know, that my family is so prepared to step into the plate if the need arises. At first I thought that they would not be able to handle it. Now I know better, that notion brings me a lot of peace. In this video, is noticeable some of the physical manifestations of living with a neurological disorder. The eye movement, pauses, movement of the head and problems following a thought to the end. I still can mask it, but is there.
It is possible to dream and go above and beyond these conditions. I know I do.
The Choice to Keep Going
"To be happy and at peace is a choice. To remain grateful and to live your life to the fullest shall be your only prerogative.
Update as March, 2015
I just got the definitive results of my MRI's and Ct scan. While I was at my SSI court hearing I found out that I not only have plaques in my brain, but I also have extensive calcification of the internal walls of the brain (specifically the frontal lobe) but also the enveloping cortex of the dura matter and spinal cord. Allegedly due to a undetected fungal or bacterial infection in the early 2000s.
Meaning, I have the early manifestations of not only Alzheimer but also Parkinson's. This is added to the seizure disorder and the immune disorder from the Multiple Sclerosis. I will not lie, I was angry and so was the doctor that read the findings. I was not aware, no one told me. But, like he said, that information would have not changed the course of the condition. So in that matter, there was nothing to be done. The infection only accelerated the process of disability. Oh well my friends, I have no idea what to expect. The only thing that I am sure now, is that I want to live my life to the fullest and do EVERYTHING in my bucket list. Besides, this has given me a whole new perspective on life. I know after all the anger and difficulty accepting my future subsides, I can dedicate myself to build moments for my loved ones. Good ones. Bless you all and never take your days for granted. Life is indeed beautiful and a gift, cherish it.
© 2014 Anan Celeste