Never Give Up On Your Dreams

 

Hello! I am a 43-year-old (young) man.  I grew up in a small village seven miles west of Corning, NY called Addison. I graduated high school in 1985 where I was involved in the following sports: (no I wasn't a jock!) soccer, baseball, wrestling, swimming and ping pong. I know ping pong is a sissy's game but I was really good at it and my gym coach talked me into it. My gym coach was the stereotype coach you see on TV. He was an ex-marine drill Sergeant and he was 65 years old and still thought he was 20 years old (imagine that). Little did he know, everyone would laugh at him and call him "OLD MAN" behind his back. I was also active in the following: Cub Scouts, Weiblos, Boy Scouts, Little League baseball, Senior Division baseball, drama club, ski club and I followed the basketball team to away games with my father. After my graduation in 1985, I hung out for a year partying. After that became boring, I entered the U.S. Navy.

When I finished boot camp in San Diego, I was stationed overseas in Yokosuka, Japan on the aircraft carrier, the U.S.S. Midway. This is where I went to 13 different countries. As a bachelor, I had a blast!!! I spent two years there, and then I was reassigned to Port Huneme (Ventura), CA on a land base. I loved the Navy and was planning on making it my career when the unthinkable happened I had an unfortunate motor vehicle accident and sustained a traumatic brain injury which rendered me paralyzed from my shoulders down.

After my accident I resided in two rehabs and one nursing home. Since February 1, 2000 I have lived in my own apartment here in Cortland, NY with the support of the NYS Department of Health (DOH) Traumatic Brain Injury (TBI) Waiver Program and the Consumer Directed Personal Assistance Program (CDPAP).

In spite of my limitations, I am determined to live a normal life as much as possible given the disposition I have been dealt.  For a 43-year-old (young) male, I feel that to live is more than just having my basic needs met such as food, shelter, and clothing or in my case breathing without a machine and being fed using a tube.

I have been extremely effective identifying and utilizing all potential resources and as a result obtained my computer with Internet access.  Using a single switch and adaptive software, I am able to activate the computer with my index finger and thumb on my right hand which gives me the ability to write letters and send E-mails.  I have been able to explore the Internet and do research on my condition.  I have found a new freedom and control over my own life by being more productive and proactive.

Thanks to my own advocacy and persistence, I obtained my new electric wheelchair that stands, reclines and tilts. My friends/caregivers say it reminds them of “Johnny Five” out of the movie “Short Circuit”. My wheelchair is also referred to as the Cadillac of wheelchairs.  My wheelchair has EMENSLY enhanced my Quality of Life and Independence. It does the following for my Quality of Life:



  • Reduces the occurrence of Urinary Tract Infections


  • Improves my circulation


  • Improves my passive range of motion


  • Reduces my abnormal muscle tone and spasticity


  • Eliminates the occurrence of pressure sores


  • Improves my psychological well being.


Best of all is the "joy" of standing again. After nearly 12 years of having to just sit or lie down, to be able to not only stand, but to be able to move about while standing, is almost indescribable. I have friends who have standing tables, but all who have them have told me that after a few months they stop using them because it is so boring to just stand in one place.

I deserve a life with more of a purpose. Thus, I have adopted a goal to enter the competitive work force of today.  Towards that goal, I have attended college at Cortland State University and at Tompkins Cortland Community College.

With an unyielding desire to become financially independent and achieve self-sufficiency, In September 2004 I combined my 5 years of experience working with PowerPoint and my 4 years of formal education in Business and PowerPoint software I created my own small business known as “PowerPoint Plus”. I had personally invested over $3,000 of my own modest earnings to expand my business which consisted of designing PowerPoint presentations for local colleges, non-profit organizations, and small and mid-sized businesses. Due to some UNFORESEEN financial difficulties I was forced to go out business and file bankruptcy.        

I’ve searched on the internet over 7000 grants offered by federal government, state government, local government, organizations and foundations but I wasn’t eligible for ANY of them. However…if I was a recovering alcoholic or recovering drug addict I would be eligible for OVER a 1000. How fair is that?

As a result of my unbending persistence and motivation in 2005 I was presented with the esteemed Alan F. Brown Award by the J.M. Murray Center. This esteemed award is annually presented to an individual who through their own life serve as an inspiration to others with disabilities to encourage them to keep their focus on their individual goals. Also, in 2005 I was presented the New YorkStateSenate Achievers’ Award by Senator James Seward. This prestigious award recognizes an individual’s ability to overcome personal physical challenges and honors his accomplishments on behalf of his community.

I am now working with VESID (Syracuse, NY) and the SBA (Binghamton, NY) on starting a new home-based business. Progress is being held up until other funding resources are sought out. Nobody has in there budget the $5000-$10,000 start-up cost I need to put me one step closer to reaching my Dream of financial independence.

No words are powerful enough to explain how good it felt to leave the nursing home and become independent in my own apartment. However…along with it came some major hardships/obstacles to overcome. One of them was transportation. The first eight years’ this wasn’t a hardship because my parents purchased me a used 1989 Ford Econoline van that was handicap accessible. In 2008 it became inoperative and it would’ve cost me over $900 to get it fixed. It was NOT even worth $900 so I took it to the junk yard. 

When I go to Doctor appointments in Syracuse, NY or Tully, NY I take TLC and I end up waiting for 2 or 3 hours for them to come back to bring me back home. Medicaid probably has paid MORE than the $14,000 (which is needed to purchase a GOOD used accessible van) in the past TEN years to TLC. I have attempted to use Cortland transit but they ONLY run in Cortland/Homer between 8 AM-6 PM and no weekends or holidays. I have to change buses most of the time and if it is cold, rainy, windy etc. I have to sit in it and there is a HIGH probability that I will get pneumonia. They also offer Dial-a-Ride (which is a personal direct route) however…it cost between $6 and $8 round trip (with my minute fixed income of ONLY $856 from SSDI per month) I can’t afford that but, once again they only transport in Cortland/Homer and don’t run after 5 PM, weekends or holidays. I obviously can’t even go visit my parents and they are getting older thus they can’t come as nearly as much as they used to or my friends (that live over 70 miles away). I can’t even go shopping.

The VA has a dense (my opinion) policy that states if a (I) Veteran purchases a 2005 or newer van without any handicap modifications they (VA) will pay up to $26,000 to have the handicap modifications done but WILL NOT pay $14,000 for a van that already has all the handicap modifications done.  To my knowledge there IS NOT a federal or state program that will purchase me a handicapped accessible van. I obviously can’t afford to purchase my own van. Two years ago I sent a letter to 25 local new and used car dealers requesting them to donate me a van that HASN’T been modified and I recently mailed a similar letter to OVER 100 national companies that rent handicapped accessible vans. Nobody has replied.

Social Security Disability Insurance (SSDI) provides me with a petite $10,272 annually (That’s OVER 15% BELOW the national poverty level). Then Medicaid says, “That’s too much”, pay NYS Medicaid an annual spend down of $816.  Thus, I end up living on an infinitesimal $9,456 annually.

 It’s my opinion that most politicians in America wear there priorities, principals, morals and values on the wrong sleeve. Americas ends billions of dollars to other countries when there is poverty, hunger, homeless, disabled, etc. that need help right here.

cryptster cryptster
41-45, M
1 Response Feb 14, 2010

very inspiring story. thanks for sharing this to us. =)