Give Us Dignity. We Have A Soul Too! Living with a Neurological Disorder
What would you do?
You are walking down the street, at a mall or in a classroom and you notice this person walking "funny", slurring words, sudden jerks or simply having a slight shake. For most people regardless of age or educational background , the first thing that pops in their head is;- 'What is wrong with this person ?" In the best case scenario, you assume they have a condition that affects their motor skills. At worst...there would be one or two that will say he's drunk, she is on something, Why would he get out of the house in those conditions? It makes people uncomfortable.
Many also assume that is a mental illness, and go as far as to try to avoid the person altogether. Not realizing that this person is more aware of your reaction that you might think. I often wonder what would happen if someone in a classroom spotted this man in a very sophisticated wheelchair that could hardly move or speak. Talking about him, even a glare or two of pity and even fear.- "It must be someone's family member. That is so sad, Why bring him here?"- I would pay to see the look on peoples faces when he is introduced as Stephen William Hawking, the guest speaker. One of the greatest minds in modern history. That just happens to be confined to a device that allows him to move around and through a electronic speech device communicate.How do you think those people felt? But most important... How do you think he felt?
We still want to live to the fullest
Perceptions and misconceptions about movement disorders
Movement disorders are categorized in over thirty eight different categories. Basically is a group of nervous system conditions that causes you to have abnormal voluntary or involuntary movements. Including slow, intermittent, or reduced movement. One of the most unfortunate side effect of having a moment disorder, is how others perceive you. As I stated before, no one knows the circumstances or challenges that a person with a neurological disorder faces day by day.
It is wrong to assume that all of these patients have the same diagnosis, the same prognosis and even worst the same type of condition. Which makes encasing everyone, even withing the same spectrum of any given condition absurd. To suggest that they cant participate in their recovery, decide about personal affairs or trying to treat it as a mentally ill is absurd.
While I was talking to a good friend of mine that suffers from Ataxia yesterday, she pointed out how even members of her own family disregarded her wishes, feelings and even treatment that she found important to try. Sadly I am not surprised in the least. Mainly because I remember that while being an RN, this is a very common practice. Not only from caregivers/ family , but also doctors, therapists and even advocates.
When you see a person walking down the street, waddling, and shaking, What is the first thing that comes to mind?
Minding others pain
If we try,consciously to mind our words, our reactions and even change our perspective on how to educate ourselves, we can spare others of a lot of pain. Living with a neurological disorder is in itself a titanic task. To fight the invisible bully, and deal with opposition from those around us is even worst. Sometimes the fight is written in our body, sometimes is lost in our slurred words, but yet inside we are yelling at the top of lungs to be recognized. Not as a disabled person, but as a human being fighting for dignity.
Patronizing the patient
For many, taking care of a "disabled" person is an automatic task. A number in a chart, a bed number or a client with a contract. These are human beings that life decided to test in the cruelest of forms. Not a paycheck or a one time fee costumer. Learn to listen, listen to our concerns and questions. A team effort is impossible to achieve if one of them is excluded. Specially when is their own life that is being affected.
Health care professionals and caregivers
We depend on you to be our allies. To be the voice when we can't speak. We need to trust that you have our best interest in mind when it comes to treatment and quality of life. We see you more than a caregiver, we see you as our advocate.
We have dreams, and expectations. We hope, we morn our lost life. But most of all, we still are that person that came to you for help in the first place, entrusting our care in your hands.
Mrs. Susan Shaka's Fight for a better life
" I am fighting for my life, because it is my life. Yet some people see me as not being able to dream, achieve and ultimately fight for what I feel most passionate about, my recovery. While speaking out for others as well"
The daily struggle
Is hard to feel invisible. Is harder when others push you into the background. We have a voice, we have passion for life and the strength to conquer an invisible monster that ail us from within.
We are here to be fighters, to inspire and to make sure that future generations won't suffer in silence as do now. Be part of the solution, not the problem. Maybe what you do to help someone today, will help one of your children's children in the future...
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© 2014 Anan Celeste