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Give Us Dignity. We Have A Soul Too! Living with a Neurological Disorder

Updated on July 6, 2014
ananceleste profile image

Anan is an online blogger and private consultant since 2009 in the areas of relationships and interfaith spirituality.

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.

Reality check

When you see a person walking down the street, waddling, and shaking, What is the first thing that comes to mind?

See results

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"

-Susan Shacka

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...

© 2014 Anan Celeste


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    • ananceleste profile imageAUTHOR

      Anan Celeste 

      4 years ago from California

      Wow, gran old lady. You humble me with such response. I am just glad to have shared it with you. Bless.

    • grand old lady profile image

      Mona Sabalones Gonzalez 

      4 years ago from Philippines

      This hub is beautiful and inspiring. It poses great challenges, and it makes me feel so small. Maybe by reading this, and continuing to read your other hubs, I will learn to become a bigger person.

    • ananceleste profile imageAUTHOR

      Anan Celeste 

      4 years ago from California

      Thank you thewritingowl ; is indeed a frustrating situation for both parts. Love has no limits, and is the universal language of the heart.

    • thewritingowl profile image

      Mary Kelly Godley 

      4 years ago from Ireland

      Very well said. My son is mostly non-verbal but he speaks to me in many ways, everyday. It breaks me heart when he is trying so hard to get his point across and we are just looking at him with bewildered eyes wondering what is wrong? Often I do think about how totally frustrating that is for him when you are trying so hard to get a basic need met, to get a simple point across and nobody understands what that is.

    • travmaj profile image


      4 years ago from australia

      Your words convey so much, I admire your stance and courage. I watched a documentary here last week - a young lady with motor neurone who finished the Iron Man contest. It was her dream come true. A touching story. Thank you for making us more aware - best wishes...

    • ananceleste profile imageAUTHOR

      Anan Celeste 

      4 years ago from California

      It is a subject that impacts everyone Sparklea. We either know someone or love someone that has these types of challenges. Is time for the world to come together and give dignity to all people. Specially those that cant demand it. I know your friend is looking forward to that trip, so please make it special for her. Blessings

    • Sparklea profile image


      4 years ago from Upstate New York

      ananceleste: Voted up, useful, and beautiful. THANK YOU for this very important read. One of my friends was diagnosed with Parkinson's last year and one of my very close friends has just been diagnosed with Parkinson's a couple months ago. She wants to travel she and I are going to The Rock And Roll Hall Of Fame in Cleveland Ohio next month. She wants to live her life and I plan to be a part of that. Another best friend's brother in law was diagnosed with Multiple Sclerosis over ten years ago and he is doing great...his deterioration has been slow. Her sister happens to be a nurse which is a God send.

      Everything you said makes sense, and everything you share needs to be shared and addressed to the public.

      Thank you so much for speaking up. God bless you real good, Sparklea

    • ananceleste profile imageAUTHOR

      Anan Celeste 

      4 years ago from California

      No LeslieAdrienne... thank you.

    • ananceleste profile imageAUTHOR

      Anan Celeste 

      4 years ago from California

      Hi pstraubie ! I s true as human being we lost our inate sense of compassion and equality. we have to go back when people were not jaded.

    • LeslieAdrienne profile image

      Leslie A. Shields 

      4 years ago from Georgia

      Thank you......

    • pstraubie48 profile image

      Patricia Scott 

      4 years ago from sunny Florida

      Well have shared feelings and thoughts that many would not. Somehow those with conditions such as these are often shunned or ignored or worse, made fun of. Over the years I had children in my classes who had CP or other such disorders and it was so heart warming to see the way the children received them into our classroom and made them feel just like one of them, offering assistance when it was requested, not forcing themselves on the children.

      Thank you for sharing this

      Angels are on the way ps

    • ananceleste profile imageAUTHOR

      Anan Celeste 

      4 years ago from California

      Hi cygnetbrown;

      Even when no one is there to witness someones strength during pain, even angel learn about the human spirit. I always say there is no compassion without suffering, blessed is the man that can feel compassion without suffering.

    • cygnetbrown profile image

      Cygnet Brown 

      4 years ago from Springfield, Missouri

      Last night I watched a PBS documentary about Stephen Hawkings. What an amazing testimony to the strength that man can possess!

      I used to work in a nursing home and cared for many people who were unable to care for themselves and I had to wonder why it was that they were still here since they were so helpless. Suddenly it dawned on me that the reason for their helplessness was to teach me grace, compassion and patience. It changed the way I did my work from then on.

    • ananceleste profile imageAUTHOR

      Anan Celeste 

      4 years ago from California

      Thank you guys soooo much. Is imperative that the message gets out for those that cant speak for themselves.

    • Hackslap profile image


      4 years ago from Sydney, Australia

      A very unique and beautiful perspective on the subject....I admit I too am guilty of a bit of pre-judgement ..will ensure I cull it ...

    • profile image


      4 years ago

      This is beautiful

    • vocalcoach profile image

      Audrey Hunt 

      4 years ago from Idyllwild Ca.

      Thank you, my friend for this touching and thought-provoking hub. I will share this on FB, Twitter and more. Your message needs to be heard loud and clear. Well done!

      We should all be care-givers as well as advocates, showing dignity and respect to anyone with a neurological disorder. - Audrey


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