I Want To Know What Love Is

I What To Know What Love Is                                                                                      

I want you to show me…   Foreigner

Since Valentine’s Day is Monday I will give you an example of what love is because I can’t show you. My wife Marge and I have been married 45 years.  At my son’s wedding I was asked to give a brief talk. The following quote was part of what I said: “The last 29 years have been the best of my life. Marge and I have shared laughter and tears, good times and bad, joys and sorrows; but more then that, we have shared our dreams, our inner most thoughts, our strengths, our frailties, and we have shared our love. Marge has always been there when I have needed support.  Things that happen to me when we are apart are not complete until I share them with her. Only with Marge can I truly be myself and completely relax.”

Less then 5 years later I had my accident. The accident did not just happen to me, it happened to my family but since we had an “empty nest” it was really Marge who had to shoulder the majority of the responsibilities. The readjustment was greater than we ever anticipated. It took a long time. I like to tell people that our dog realized in a few weeks what it took me years to figure out and that was that Marge was now the alpha member of the family. Many couples, unfortunately, do not survive the consequences of a readjustment of this magnitude. We were very fortunate to head into it with a strong relationship built up over 35 years. More often than not people tend to focus on me and the challenges that I have had to deal with. I think many give little thought to the tremendous responsibilities placed on the spouse. My wife epitomizes the wedding vows and lives up to Tammy Wynette’s call to “Stand By Your Man”. Marge, not only cooks and manages our home, she also oversees all my care issues, chauffeurs me everywhere I have to go and puts me to bed every night. I owe my good health and lack of complications to Marge’s supervising my care.

Birds at a feeding station station

The hardest part of my adjustment is having to watch Marge deal with the physical tasks that have been thrust on her. Yesterday and today February 10 and 11 we received several feet of snow (check the roof of the dog house in the picture). We have a wonderful neighbor who keeps our driveway plowed and open. But there is still a lot of physical work she must do like shoveling the front walk and bringing in firewood. There are also activities she chooses to do like feeding the birds. After my accident we decided that the birds would be a wonderful source of entertainment for both of us. I have built some bird feeders and we have feeding stations all around our house. The snow from the storm is waist deep so movement off paths is extremely difficult. Both yesterday and today I had to watch Marge shovel her way across the lawn, pulling a sled full of birdfeed behind her. She had to shovel in several different places to reach all the feeders. She returned to the house tired from her struggles. Why does she do it? After all it is not necessary; the birds would survive anyway. Marge struggles to feed the birds because she loves them and because she loves me. So Foreigner that’s only one small example of what love is!

Cardinal & Sparrow feeding during the storm

 P.S. If you know Marge please don’t mention this blog to her because she doesn’t want me to write about her.

Don’t Rush To Christmas

Before Halloween my wife informed me that stores were already beginning to display Christmas items. We have yet to celebrate Thanksgiving and the majority of the advertisements on television are related to Christmas. I believe retailers are rushing us to Christmas to increase their chances to make a profit. I feel very strongly the Thanksgiving holiday gives us an opportunity to realize how fortunate we really are. I tell people from the minute I had struck the bottom underwater I am one of the luckiest people in the world.

The grandchildren alway bring us joy

Travis Roy has said “There are times in our lives when we choose our challenges and other times when challenges simply choose us.  It is what we do in the face of those challenges that defines who we are, and more importantly, who we can and will become.”  Years ago a psychiatrist asked me to identify as many positive things, as I could, that resulted from my accident.  After a great deal of thought the only thing I could come up with was that I had met some wonderful people. As I think about the question today I realized that there are many things that I really do have to be thankful for. I have been given a second chance at life. (I had no pulse when I was brought on the beach).  Marge, my wife of 46 years, and family have stood by me every step of the way. Everyday Marge goes out of her way to help me enjoy quality of life. My nurses are always willing to go the extra mile.  I have many friends who give of their time to help me do the activities I love. I have surprisingly good health. I have learned more about human nature and the power that exists within the human mind. I have wonderful memories that I am able to revisit. I have been able to continue being an educator and, I hope, help others to deal with the challenges they face. The kindness that is in others has become very evident to me. When we watch the news we often are led believe that there is much evil in society in general but I know that is not true. Finally, even though I am in a chair I have much freedom and opportunity. So, don’t allow yourself to be rushed to Christmas without stopping to realize what you have to be thankful for.

Friends helping me to go kayaking

A Failure SYSTEM

I need to find a new place to live as soon as possible.  I am living with a relative but I can’t stay for a long period.

For years I have been receiving services from the Division of Development Disabilities in New Jersey (DDD). I contact DDD regarding to this problem and I asked them for help.  Unfortunately the process is taking too long.

I mailed the following letter that to my case manager from DDD back in the summer.  They were aware of the situation before the letter was written.

On September 1 20010, my parents will be moving back to the Dominican Republic (DR). Once they leave I will not have a place to stay.   Since the DR lack of resources for people with disabilities to attend school I can’t move back with my parents.   I also have student loans to pay. Financial aid doesn’t cover my entire tuition.

Since I moved to New Jersey at age fifteen, I have accomplished a lot of goals. Months after I moved, I was placed in Cerebral Palsy Center in Clifton.  The major focus of the school was to teach the students independent skills how to prepare a meal, clean a room, count money and so on.

At that time, my mother and I didn’t have any idea of what school I should go to. I was evaluated by the child study team of the district. According to them I should attend a special school.

Later on, my mother and I got involved in an advocacy group for parents with kids with disabilities. Five years later, thanks to my mother and the parents’ advocacy group we found out that I was placed in the wrong school. I transferred to a regular high school.

But my age was my biggest obstacle. I was already 20 years old and the limit age is 21.  We requested permission to the board education

In high school I had the opportunity to improve academically. Since the freshman year most of my reports cards were “As” and “Bs.” I graduated from high school on the honor roll.

After graduation I attended Passaic County College. I started taking ESL courses English As a Second Language because my English was a little poor. I had difficulties with class schedule, homework and I felt frustrated as a result, I dropped out of college.

Then I tried to find a job. The only job that I found was working in a workshop for people with disabilities but I didn’t feel happy to be working there. I wanted to do other types of work such as computer data, receptionist or file clerk. I was told that I didn’t qualify for that type of job. A year later I stopped working at the workshop.

I went back to college to complete the courses that I needed it. I took one or two courses per semester. One of my English professors became my mentor. Thanks to my family and his support I was able to success in college. While I was there my mentor encouraged to write personal essays, poems, articles and doing translations from Spanish to English. I didn’t know that my writing skills is strong. I also completed the ESL Program and took college level courses.

On May 2009, I graduated with an associate in liberal arts. On September first I transfered to William Paterson University. Now I am communication major. Also last year, I worked as intern for the state of New Jersey.

Struggling

I have not written in a while because I have been struggling for several months with a significant health issue which has resulted in a high level discomfort during most of my waking hours. After the initial adjustment to my disability, I felt as though I was successfully handling most issues most of the time and adapting to the circumstances I found myself in. Currently, the ability to place things in perspective and reassert control over my situation has escaped me. I have become depressed, frustrated and withdrawn compounded by my seeming inability to gain control over my emotional state. I know the power to deal with this challenge is within me, but I have been unable to tap into it. We are still at the point where we are trying to identify the possible cause or causes of what is taking place. Early next week there should be a clearer picture of what is going on and what options are available to rectify the matter.

 This situation is an almost constant reminder of what my disability means. None of the possible solutions are very desirable. I find myself slipping into a spiral of self-pity which does nothing to help the situation. The almost constant physical discomfort makes marshaling my mental strength to fight this challenge extremely difficult. The fact that I have been extremely healthy over the last 11 years does not help matters either. Naively, I had done little to prepare for additional health problems. I feel compelled to write this blog so people understand the struggles most of us with major disabilities experience on a constant basis. I have likened the situation to a juggler keeping a number of balls in the air, and as more balls get added. It becomes more and more difficult to maintain the skill.

Turkeys

 On October 1st turkey hunting season begins, and I am hoping that this endeavor will occupy my thoughts and mind and will help provide me with an avenue for gaining better control. The turkeys and deer I hunt do not care that I am in a wheelchair and it is irrelevant to the game that I use my mouth to fire my gun. All they know is that I am another predator and that is all I want. Interestingly, this morning 13 turkeys showed up in my backyard to feed at the birdfeeders. I will take that as a good omen for developing a more positive outlook. By the way I never hunt these birds.