Filed under: Behavior, Community Inclusion, Disability, Education, Independent Living, Personal Safety, Reality, Sensitivity | Tags: life lesson, physically challenged
Don't Mess With The Big Boys
I called S.T.A.T. Communication, the parent company of Lifenet. They were here within the hour. They could not be sure the problem was with their unit but replaced all the equipment to be on the safe side. For a brief period of time the phone worked okay, but shortly the same problems began cropping up: no dial tone, in the middle of dialing the line went dead, not receiving calls and similar problems. My wife called for technical support but could not get a live person. The automated machine informed us that a repairman could not come until June 1st. I refused to accept this and called Customer Assistance. They told me I had the wrong department and connected me to Technical Support. After waiting 20 minutes I finally got a “real” person who assured me someone would be at my home in the morning.* No one showed the next day. When I called in the evening I finally got a “real” person who said the service slip was lost*. He then promised* me again someone would be here first thing in the morning. I was up and ready for the day around 10:30am, but no one had come. I called Verizon and after quite a run-around was told* a serviceman would be here in the afternoon. I’m sure you have guessed by now that no one came. At this point I called Customer Service and asked to speak to a supervisor. Making an effort to remain as civil as possible, I explained my situation and the treatment I had been receiving. When I finished she asked me what I would like her to do. DUH, I told her she just didn’t get it and hung up. Undeterred, I called Technical Support again and, after a while, was told a repairman would be here in the morning. Fat chance of that I thought, because the next day was Saturday. I really need to apologize, how could I have doubted the word of this corporate giant. However, the repairman arrived and was wonderful, explaining to me he just received the work order that morning. After working on the transformer by the road he told me he thought he had fixed the problem.
Since Saturday was the beginning of Memorial Day Weekend I waited until May 31 to call Verizon to explain the disgraceful treatment I had received. I called the number of the Department for People with Disabilities. After listening to music for 20 minutes I got a supervisor who was very understanding of my plight and frustration. Imagine my bewilderment when she told me Verizon does not have a Complaint Department or even anyone you can file a complaint with. A pretty clever Verizon idea I thought. She explained my account did not have a medical emergency tag; it used to but for some reason it no longer did. She offered to connect me with the people who could rectify the oversight. I thanked her and dutifully waited on line for about 15 minutes. The new associate listened to my story for about 10 minutes before informing me she could not help me because she was in California (another Verizon joke, I assured myself). She offered to get me an associate in New York, where I live, who could help me. Another clever idea I thought. The fellow who answered must have been aware of the time I had been waiting, so in 5 minutes said he would send me a form I could fill out.
But, I was not done; I called the Better Business Bureau in New York to file a complaint. Prior to speaking with a “real” person you must fill in certain information on line. The company you are complaining about must be in their data base. Can you imagine my surprise when neither Verizon, nor the Verizon Phone Company nor Verizon Communications were in their data base! Now I WAS done! After all what do I know about the workings of a large corporation like Verizon, I thought FiOS was a dog.
* I don’t want to use the term lied
Filed under: Behavior, Community Inclusion, Disability, Education, Personal Safety, Reality | Tags: life lesson, quadriplegia, risk
For the most part I live, by choice, in a small world. I have always been a very private person. Of course that changed quite a bit 12 years ago when I became a quadriplegic. I have a nurse that comes in every morning for 2 ½ to 3 hours. She helps me with my morning hygiene, gets me dressed and in my chair ready for the day. I retired seven months prior to my accident and the greater majority of my time was spent pursuing my love of the outdoors. I still find time to continue the recreation activities that I love. But almost anything I do now has to involve others and it’s still hard for me, at times, to ask for help. Much of my time now is spent on the computer writing blogs and placing information on my website. My wife calls me a “mouse potato”.
Last week I got an e-mail that awakened me to a harsh reality. The sister of a friend had given my name to a friend of hers, who had a friend, who in turn had a friend whose husband had broken his neck while in the water off a beach in Hawaii. He had been stabilized and they were looking for information about rehabilitation hospitals on the mainland. I did all I could, giving information, sending information and offering myself as a resource. I was shocked to find out their insurance did not cover an air ambulance flight to return them to the mainland. If she could secure a large amount of money the plane would come then. His wife was overwhelmed, struggling to try and get the money together and make the decision of selecting the best rehabilitation hospital.
This event awakened some frustrating and painful memories for me. I also broke my neck while standing in waist deep water. I had to be transported by boat from the island of St. John which had no hospital, to the island of St. Thomas. As I fought for my life in the hospital my wife was in shock trying to make arrangement for my return to the US mainland. The air ambulance refused to leave Florida until my wife had $15,000 in hand. We had a Visa card with a line of credit of $5000. We always paid our entire monthly bill on time and saw no reason for a higher line of credit. Even though she contacted the emergency number on the card, they were unwilling to increase our line of credit after hours. If we had had a platinum or gold card the plane would have come right away. If you get nothing more from this blog, know that you should not leave the US mainland without a platinum or gold credit card. Thirty-six hours later I finally arrived at the hospital in Syracuse New York. The next six months until we returned home remain like a foggy dream to me.
Shore Break Sign
The terrible experience of this husband and wife I’d never met was a gut wrenching reality check for me. Scenarios like this are taking place a umber of times every day. Why must all these additional demands be placed on somebody who is already facing a catastrophic challenge? We live in the United States of America. Why must anyone want for assistance at a time like this? Members of our government would never find themselves in this situation. Why should anyone else? Why shouldn’t every person in America have the same care available to them that is available to our members of Congress? Why should anyone far away from their home who has suffered a catastrophic accident have such additional demands placed on their shoulders? What are we missing here?
Filed under: Attitude, Behavior, Community Inclusion, Disability, Education, Personal Safety, Reality | Tags: adapting, control, life lesson, lifestyle, physically challenged, using your mind
In the 1980s, during the summer, I was an instructor for State University of New York College at Cortland for their 2 week Outdoor Practicum a course required for all Recreation and Leisure Studies majors. The students stayed at Camp Huntington on Raquette Lake in the Adirondacks which is owned by the College. During the first week students were taught outdoor skills they would use the following week. When the instruction was finished students were placed into groups of 8 to 10, assigned a staff member and then taken on a 6 day wilderness experience where they used the skills they had learned. Travel was almost always by canoe, portaging between lakes.
One summer I had a young woman assigned to my group who was legally blind. Prior to our trip she and I met privately to discuss what her expectations were for the experience. I had noticed while we were in camp she could be very defensive and abrasive at times when others tried to assist her. I felt she failed to grasp that they were only trying to help. She was very upfront with me about being allowed to do things herself. We agreed that I would not step in to help unless she asked for assistance. In return, she promised to do whatever I asked of her immediately and without hesitation. There were some potentially dangerous pitfalls on the route where immediate compliance might be necessary for safety.
The trip we devised would incorporate an opportunity for her to use as many of her senses as possible. We climbed down to Raquette Falls so she could feel the spray from the rapids on her face and listen to the roar of the water. We climbed a mountain called Ampersand near Middle Saranac Lake. The climb is very demanding and lasted several hours even for able-bodied individuals. The trip proved to be a great success and I remember to this day her telling me on the summit of Ampersand, “Now I know I can do anything if I put my mind to it.”
The Group On The Top Of Ampersand
How ironic that I now find myself in the same situation with people often offering to help me do whatever it is I’m trying to do. It’s been my observation almost everyone’s gestures are well intended. Most want to convey their empathy, but sometimes I have to remind myself of that. They don’t realize their effort could be misinterpreted as, “I don’t think you can do things for yourself”; for example, when a waitress asks my wife what I would like to order, implying I am totally incapacitated by my disability. When I talk to a group I always drop a piece of paper on the floor. Ninety-nine percent of the time someone moves to pick it up for me. My wife usually intercedes to stop them. When I’m ready, I pick it up using my paper-pick-up tool. I drop a bottle of soda, a piece of a jigsaw puzzle, a book and one by one pick them up; in public schools the audience usually applauds. I tell them these are not tricks but rather ways that I have developed to function independently. I like to say disability does not mean inability. People need to understand that members of the disabled community are not totally helpless. And members of the disabled community need to remember people offering to help only have the best of intentions. So remember to tell people, “If I need help I’ll ask.”
Filed under: Behavior, Disability, Education, Observation, Personal Safety, Reality | Tags: control, life lesson, using your mind
Emergency information on refrigerator
For any of us who have serious medical issues it is probably a good idea to carry a form that would be available to anyone providing emergency care to us any time. I have a single 8 x 10 sheet of paper that has information on both sides. I have a copy on both of my wheelchairs, there is one in our van, one in my wife’s car, another in her purse and my nurses each have one. It’s folded in way so the words EMERGENCY INFORMATION are clearly visible. A copy also sits conspicuously in an envelope on our refrigerator. Obviously, the information would vary from individual to individual but also some of the data would be the same. One side of mine has information concerning Autonomic Dysreflexia which is a life-threatening condition that can develop very quickly when an individual has quadriplegia. The information includes warning signs of the condition and the protocol for immediate treatment. I’ve been to hospital emergency rooms where neither the doctors nor nurses had any idea what Autonomic Dysreflexia was or the potential it has. At the bottom of this section I have the website for the Paralyzed Veterans of America and their phone number where information is readily available on this condition.
Underneath that section I have PERSONAL INFORMATION which lists all the medicine I am allergic to and all the medicine and over-the- counter drugs I am taking morning and evening including dosage amounts. It also lists the drugs taken as needed for pain or other temporary conditions. I update this information every time there’s a change in my medications and I include the date of the last update. The paper can also be given to a doctor’s receptionist instead of filling out forms. Also included are my doctors and their phone numbers, the local ambulance number and my nurses including their home numbers, cell phone and work numbers. My wife’s cell phone number is there since she is my health care proxy, has Power of Attorney and knows where my Living Will is kept.
The opposite side contains more medical information including my address, phone number, date of birth, height, weight, blood type and other unique medical conditions I have. Below that I have a list of previous surgeries including dates and the hospitals where they were perform. The bottom half of this page includes a copy of my Medicare card my secondary insurance card (front and back) and finally a copy of my enhance New York State non-driver license which can also serve as picture identification.
