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"I have been tetraplegic for almost 15 years, and bedridden for 10. I do not allow myself to get bored..."

"I have been tetraplegic for almost 15 years, and bedridden for 10. I do not allow myself to get bored..."

Special thanks to Victoria Enz for translating the interview. Read it in spanish here.


"There has been struggle and hope for many years in my life, since I got sick when I was young: I was 35 years old. I have had Multiple Sclerosis since 1987. I was married, with 3 children. Attorney licensed in 1994, although I never practiced. I have a great family and great friends who are very close to me, accompanying, motivating, calling and helping. They are the ones who really give me strength to fight back life..."

Carlos, at the age of 35 your life changed drastically... 
I got sick. I have had Multiple Sclerosis (MS) since 1987.

How did it start? 
In January of that same year, during a tennis game with my friends, my legs got loosen (literary) and I couldn’t keep standing. After some minutes I got on my ride. It was the first sign of the disease. From that day on, my health problems began to develop and I started a year with plenty of medical consultations, examinations, and all kinds of checkups.  Finally in February 1988, a Magnetic Resonance determined – clearly – my illness. 

What were the symptoms?
Tiredness, fatigue, unsteady gait, body balance problems, urination difficulties, etc. 

What did you think then?
I thought the worst… that I was not going to see my children grow up… and that I was very unlucky.

Did you think you wouldn’t have any more reasons to continue…?
Yes, of course. For a while, I was organizing my ideas, setting up priorities, reading about my illness, getting to know it… I decided to give battle to it without confronting it directly – I knew it was not recommendable -, but accompanying it the best I could. My children were and are my absolute priority. They are my happiness.

"I decided to give battle to it. My children were and are my absolute priority. They are my happiness"

Married with 3 children, how did you deal with it at the beginning?
It was a very harsh change, although gradual. My illness progressed gradually and steadily until I became tetraplegic. They were about 14 or 15 very difficult years. 

Many years…
I learned to co-exist with my illness. My life changed completely and I had to adapt it as my disability progressed. I went from unsteady gait using a cane, to 2 canes after a while. Afterwards I used different kind of walkers, and finally a manual and electric wheelchair. I drove my car - with adapted command - until 1997. It was all about accepting my illness, my disability, my limitations...little by little

And fighting every day… 
It was about realizing I should not give up hope but fight my illness as much as I could. I worked until 1996, year in which I retired on disability after working for the same company for 20 years.

What was your job? 
I was in charge of Collections team, administrative- accounting “out of agreement” staff for a multinational company.

How do you exceed yourself every day? 
I never lose my sense of wonder, my curiosity, my interest in being informed and learning. Internet gives me that possibility.

What is your main motivation? 
To feel alive. I can still do many things – as long as I have internet and a computer available – and be creative within my limitations. In that sense, re-discovering poetry has given me a great satisfaction. 

 

"I've always been positive in life and I've learned to be patient and willing. I always tried to accompany my illness, preventing full control of my life"

"I have been tetraplegic for almost 15 years, and bedridden for 10. I do not allow myself to get bored..."

What would you say to those people in a similar situation that are considering euthanasia?
I don’t feel myself like an example for anyone. I think every disabled person bears his disability the best they can, according to their personality, character, and personal circumstances... From the beginning I focused my fight on things that I was able to do, instead of thinking about what I could not do since the latter wouldn’t help me. That allowed me to be better prepared for my tetraplegia.

I have been tetraplegic for almost 15 years, and bedridden for 10. I do not allow myself to get bored ... I'm always busy doing something, occupying my mind. I think that helps me not to get depressed and continue loving life.

How did your family react when you found out about your illness?
With great sadness of course but I always had both psychical and emotional support.

What about your friends? Were there any who ‘abandoned’ you in a certain way?
They have always been very close. They help me, accompany me and give me encouragement from the outset. Some of my friends are more than friends, they are friends-brothers. They are my soul mates.

How did your family react when you found out about your illness?
With great sadness of course but I always had both psychical and emotional support.

What about your friends? Were there any who ‘abandoned’ you in a certain way?
They have always been very close. They help me, accompany me and give me encouragement from the outset. Some of my friends are more than friends, they are friends-brothers. They are my soul mates.

And after 25 years of marriage, you voluntarily decided to enter a nursing home. Was it an act of love, and at the same time, the most painful one because of your family? 
Yes, of course. It was the hardest decision of my life. I was already quadriplegic, totally dependent, and I thought (and still think) that it was the right time for my admission, and give a break and tranquility to my dear family.

"From the beginning I focused my fight on things that I was able to do, instead of thinking about what I could not do"

How did they react to such a decision?
They were very shocked at first, but as time went by, both my family and my friends understood my reasons. 

You are very active in the online world. You have created websites and communities on Google Plus. Tell us about them... 
During 1998 I built up some web sites: museosweb, diariosweb, autoslinks, Pacara, museumsweb, and some other I do not remember.

One of them was museosweb (com.ar), which was nominated in 2000 on Art & Culture Category by matear.org.ar (best Argentinean websites awards). All of these sites were discontinued in 2002/3. 

And there's more, right?
Since late 2013 I've created some blogs and some cultural communities in Google +. The main ones are: 

Blogs

·         Brotes poéticos (all my poems)  http://carenzpo.blogspot.com.ar/
·         Pablo C. Ducrós Hicken  (1903 – 1969)  http://pabloducroshicken-pintor.blogspot.com.ar/
·         Museosweb  http://museosweb.blogspot.com.ar/
·         Museumsweb  http://museosweb-museumsweb.blogspot.com.ar/

Google + communities:

·         Poetas, Escritores, Lectores: sigue y te seguirán
·         Iberoamérica cultural: Poetas y Lectores
·         Iberoamérica cultural : Escritores y Lectores

Are social networks an escape from routine for you?
They are great entertainment.  

 

"I have a special software that allows me to operate my pc 100% at a slower pace, which obviously does not worry me because I have plenty of time"

How do you control and manage the computer?
Even if I am totally quadriplegic and bedridden, my illness has not affected my head, senses or neck. Since 2006 I have had a special system that allows me to operate the pc 100%.

 How does it work?
It is made up by a gadget that I handle with my head. A click, which is synchronized with an external mouse and full-featured. Combining their functions, they replace the standard mouse which allows me to move the cursor and use the computer without limits, only at a slower pace. The system also features a special keyboard that lets me type but I try not to chat because of that reason.

How does the Argentinean government regulate its laws as regards Multiple Sclerosis and other disabilities?
The Argentinean government has a series of laws in its legislation– complimentary within each other - containing extensive protection for handicapped citizens. However, it is sometimes necessary to litigate in court to achieve the recognition of those rights. Personally, I get a special ‘disability pension’.

 Do you believe in God? Yes, I do.

Which is the virtue you value most in a person? Temperance.

What is it that you like least about today’s society? Indifference, injustice, inequality and corruption.

A phrase of quote… ‘I am convinced of being born a sword, and possess the encouragement to go to the crusade’ I do not know the author.

 How is your everyday?
I read newspapers, books, I listen to radio, music, audio books, and I watch documentaries and movies, but almost no TV. I write poetry for my blog ... At the age of 62, I have become a poet (laughs). I moderate my communities in Google +, stay informed via internet, and I keep myself busy and entertained.

Carlos conveys that always, whatever our situation, we can find a motivation to love life.
Thank you to Carlos and his family.