Filed under: Ability, Attitude, Behavior, Disability, Education, Reality, Sensitivity | Tags: control, life lesson, using your mind
Monday night is “fight night” in our house. I want to watch Monday Night Football and my wife wants to watch Dancing with the Stars. I sometimes end up giving in, even on nights when the Giants are playing. Last Monday night October 3, I was deeply touched by several of the dancers but no more so than JR Martinez. If you watch the show you know that the contestants are selected to gain the interest of many different segments of our population. Week three’s theme was to illustrate “The Most Memorable Year of My Life,” with each couple performing a dance to their song of choice. Most of the dances were well performed and highlighted a high point or low point in the participant’s life. But nothing, in my opinion, came close to the performance of JR Martinez.
Karina Smirnoff & J.R. Martinez photo by Adam Taylo ABC News
JR is not the first person from the disabled community to compete on Dancing with the Stars. In 2008 Marlee Maitland, actress and activist, appeared and danced for three weeks until she was voted off. Ms. Maitland has been deaf since the age of 18 months. Imagine getting out on the dance floor and trying to perform in front of a large audience when you are unable to hear the music. In 2007 Heather Mills appeared even though her left leg below her knee had been amputated in 1993 as a result of a motorcycle accident. She danced with a prosthesis and did quite well. There may have been others but these are the only ones I recall. Perhaps I was watching football. I was amazed and dumbfounded by these contestants on a variety of levels.
For some reason JR Martinez’s performance seems to stand above the others. Disabilities present themselves in thousands of different ways. In a society that worships physical appearance, women, men, and even children are in increasing numbers going to plastic surgeons for operations to improve their physical appearance Mr. Martinez should be an inspiration to all of us. His acceptance of his situation is a lesson we all can learn. His resilience, fortitude and perseverance have enabled him to rise above a situation which could just as easily lead to despair and hopelessness. Those of us in the disabled community would do well to emulate these characteristics. After all there aren’t any attributes in JR Martinez that aren’t in all of us. JR Martinez’s performance made me proud to be a member of the disabled community and I never thought I’d ever say that. So, my friend, if you feel like you need some inspiration look to those members of the disabled community who, like Christopher Reeve, are refusing to allow a disability to determine how they will led their lives.
Filed under: Ability, Attitude, Behavior, Disability, Education, Independent Living | Tags: adapting, control, quadriplegia, using your mind
The hospital table was tilted on a severe angle. Obviously, it was broken. My nurse took it apart and found the base had broken. Off it went to a local welder who was more than willing to fix it. The focus on my table stirred up some less than happy memories. Early on with quadriplegia, you seem to be at the mercy of everything and everyone. Little or nothing seems within your control. It became vital for me to regain control of some things regardless of the price that had to be paid. Most of my issues and frustrations still involve the same factor and that is control. When I feel as though I have control in a situation I feel comfortable regardless. When I don’t have control the exact opposite is true; I get nervous, frustrated and angry at the lack of ability that I have. When I first came home from the rehabilitation center, I had absolutely no control of anything. As my physical health improved I became desperate to regain some control over my life. In addition to the physical results of my accident, I was dealing with tremendous mental anxiety which left me frightened to be alone, afraid of the dark, fearful of the unknown and scared to be in certain places or positions. I had started having night terrors and was getting very anxious over my inability to exercise any control over my environment. The demons were worst at night, so that’s where I began. After a while I realized that it was possible to begin to exert control over basic issues that were bothering me.
I already had the hospital table and I knew that I had to place things on the table that would give me control of the environment, at least in my immediate area. I can’t remember exactly the way things transpired, but today on my hospital table I have several items that give me control. The most important items is a remote switching device which allows me to turn the lights on and off, not only in the bedroom, but in other areas of my home. It also allows me to use my CPAP machine. I have a large remote for the television which has a strap handle that I can grab and easily manipulate it when needed. I also have a pill container which has the two pills that I need from time to time, one for pain and the other for anxiety. I can reach them and take them any time of the day or night. There is also a small drink coozie that contains mints. Often when I wake up at night my mouth is extremely dry and having a mint relieves some of the foul taste. There is a water bottle on which I have placed handles so that I can grab and easily grip it if I need it. My LifeNet is attached to a hook on the leg of my hospital table at night, unless my wife is gone and I’m home alone. In that event, I wear the LifeNet in bed. If Marge is not at home, I also add a portable telephone to the table that is quite easy for me to use. In addition, my iPad also sits on the hospital table along with a set of headphones. If I wake up and my wife is asleep, and I want to listen to music or watch a movie, all I have to do is plug the headphones into the iPad and I’m in business. At times in the dark it’s difficult for me to find the port for the headset, so I put a small piece of grip tape along the edge of the iPad leading to the port for the headphone. I can feel its rough surface and follow it to the port. We have also strategically placed some Velcro on the hospital table; one piece is to secure the remote switching control, and the other is used to attach the mask that I wear for my CPAP machine. I use these when my wife is away or I want to stay up longer than she does. I can just grab the mask and put it on. A bed control clipped on my shirt which allows me to raise myself in bed was another addition. With the help of the CPAP mask I began to sleep comfortably through the night, only rarely experiencing my past fears and anxieties. Furthermore, as I was able to regain my control in a few areas, I began to realize I could do it in other situations as well.
Right to left: Switch Remote, Coozie, Water Bottle, Pill Container,TV Remote, CPAP Mask, iPad and Headphones,LifeNet Hanging on Leg
Filed under: Ability, Attitude, Behavior, Disability, Education, Observation, Reality, Sensitivity | Tags: adapting, life lesson, physically challenged, quadriplegia, using your mind
How does one begin to deal with the devastating changes in lifestyle brought on by a catastrophic event? One of the techniques which can help is to look back over your life and find skills you already have that can be helpful. This is why, I believe, adapting is so very difficult for young people who have fewer life experiences to draw from. At 68 years old my life certainly seems to have gone quickly. I wonder how much longer I’ll live. Not only have I looked forward, but lately I’ve spent more time looking back. The pivotal point looking back was my accident in 1999 which left me a quadriplegic at the age of 55. In the past 12 and half years I have forgotten what it was like to walk, run, and bike or make love. Hard for me to believe, but true. What I do see when looking back are experiences which at the time seemed isolated and unrelated but today look like part of a much larger plan that was preparing me to deal with my quadriplegia and its impact on my life.
I grew up in a family where hard work and inner strength were admirable qualities. Before my accident, I believe the major influence on my life was my marriage to my wife Marge. Up until that point, my life lacked stability and purpose. As a teenager I was unruly, probably drank too much and had little or no sense of direction in my life. My love for my wife and growing family gave me a sense of pride and was the cornerstone of my new life. After a college basketball injury I had become sedentary, and with the addition of my wife’s good cooking and baking, I became overweight in a few short years. As a result of a scolding from my family doctor, I began working out again. By the mid-70’s I was running up to 30 miles a week, and shortly before my 40th birthday I ran a marathon. In addition to jogging I also, kayaked, biked, skied, camped and mountain climbed. As a result I became quite disciplined and health conscious.
During this same period I was teaching Social Studies and Health in a high school in central New York. I became interested in the teachings of Buddha and especially the Four Noble Truths. Basically Buddhism taught me you can live a much happier life by being satisfied with what you have, and that being materialistic can easily lead to much unhappiness. Also a friend’s wife, who happened to be an instructor in Transcendental Meditation, taught me how to meditate. It has been a tool which I have used ever since to help me deal with stress and anxiety.
A Project Adventure group challenge
teamwork. Participants are given the time necessary to collectively figure out a solution to a particularly challenging obstacle. PA taught me that failure should not be looked at as an end in itself but rather as an experience to be learned from and to grow. Also it made me aware that there are many different ways to solve a particular problem and it’s almost always possible to come up with solution if you are willing to commit time, energy and persistence.
2nd from the left
For ten years I worked on the summer staff of a local college teaching outdoor skills and then taking small groups of students on six day wilderness trips. One year one of the members of my trip group was a young coed who was legally blind. It was a wonderful and unique experience and gave me insight into a wealth of information which has proved very useful in my own situation.
As I look back over these life experiences from the vantage point of today, it is difficult for me not to believe that these happenings were part of a process that was helping prepare me for the new life I have experienced since my accident. It took me a while to put the lessons learned prior to my accident into my “toolbox”, but once I did, they became useful skills that have made dealing with the challenges presented by my quadriplegia a lot easier. So what life skills are hiding in your background that may be helpful for you to use in dealing with your own adversities?
Filed under: Disability, Education, Simple Solution, User Friendly | Tags: adapting, control, physically challenged, using your mind
I would like to share with you an experience I had this weekend. I was home by myself for the weekend. My wife needs to get away for her own sanity, and I enjoy being alone for a day or two. These separations, however, have not been without problems, but rather than cancel them we re-examine the procedures to improve the situation. We have worked out a relatively fool proof system over the years tweaking the protocol every time we felt we could make it safer. I have a LifeNet button which I wear all the time except at night when Marge is home. It has bailed me out of trouble more than once. She prepares meals ahead of time, an ample supply of drinks is left, and after a lot of time and effort, I have learned to empty my leg bag. Because of my need for certain supplies during a normal day I have attached a small storage bag to each of my wheelchairs. It is called an Armrest Organizer which I purchased from Case Logic ($9) online. I prefer to call it my “male bag” for obvious reasons. The bag attaches to the arm of my wheelchair using a Velcro strap and hangs down on the outside of the arm out of the way. When you want to use it you flip it onto your lap and it lands right side up. It opens very easily, however, while there are some interior organizational features I am unable to use them because of my quadriplegia.
My Male Bag
Sunday I went outside to empty myself, and my chair malfunctioned. All of a sudden it stopped running because of a short in the wiring system. So here I was late in the afternoon sitting out on my lawn, with the proverbial storm moving in, and no way to get help. I was beyond the range of my LifeNet and was some distance from the neighbor’s house. Talk about feeling helpless and disabled. It was a rude reminder how vulnerable I really am and pretty scary. I remembered my male bag and the items it contained. I flipped it onto my lap, got out the whistle, and started to blow three loud blasts. Shortly my neighbor came, took my chair out of gear and with the help of his son, pushed me back into the house. He later told me his dogs in the house had heard the whistle and were going crazy. In addition to the whistle, the bag also contains pills, some money, a few energy bars, my Emergency Medical Information sheet, a ring pen and a magnet. As the Boy Scout motto says “Be Prepared”.
Contents of Male Bag
Filed under: Attitude, Behavior, Education, Love, Observation, Sensitivity | Tags: life lesson, using your mind
I love the odd couple. It seems like they’re around all the time. Sometimes they can be a pain in the neck but most of the time they’re a source of entertainment and amusement. Regardless of everything, they are an ODD couple. She is older, blonde, about normal height and with a nice figure. He, on the other hand, is very young, extremely short, and is constantly standing on his tiptoes to look bigger. It’s obvious from their interaction that they are devoted to each other. They spend quite a bit of the day sleeping, but in between their naps they are constantly chasing each other around and playing. The games of tag are most amusing. She is quick as the wind, and he at top speed is still very slow. We never cease to get a kick out of hearing him run across the kitchen and computer room floors which have no carpeting. One will grab a toy and take off with the other in hot pursuit; often this will then turn into tug of war. The winner of the tug will then proceed to tease the other by parading around the house with the trophy in his or her mouth. She loves to get up on the bed because he is unable to do so; but it’s not for his lack of trying. He stands on his hind legs and jumps and jumps continuously getting knocked backwards onto the floor by the side of the mattress. Even though they nap much of the day they still sleep well at night. In the hot weather she sleeps under my wife’s bed, while he prefers to sleep on the bed. I’m sure you’ve figured out that the odd couple are our two dogs. The female, Foxy, we got from the County Dog Rescue Pound and is a mixed breed. The male, Bosco, is a Bassett Hound, and we got him from the SPCA about four months ago. My wife thought Foxy was getting depressed and needed companionship.
The Odd Coulpe Napping
Foxy can be a free spirit at times, and Bosco can be very stubborn. I love these characteristics and would never want to change them. The dogs are a constant source of amusement and love. Their daily routine keep us laughing and in an upbeat mood. Their love for us is unconditional. They flatter us with their attention and affection, and they bring much happiness and joy into our lives every minute of every day. When one of them sits on my lap, it makes me feel so very special and reminds me how wonderful it is to be alive.
Tug of War
While we are trying to teach this odd couple good “dog manners”, they have taught us a number of useful things: there is nothing wrong with being different, every day is a new day, unconditional love is wonderful, life is more enjoyable when you have someone to share it with, and it’s better to be happy and have fun than to be depressed and take lots of naps.
Filed under: Attitude, Behavior, Disability, Education, Love, Reality, Sensitivity | Tags: life lesson, using your mind
Since my accident in 1999, like many other things, the word friend has taken on a totally new meaning. Prior to that time I prided myself on being self-reliant and able to take care of myself and family in any situation. We grew or raised most of our own food and heated our house with wood we cut from our 40 acre wood lot. We took trips into wilderness areas of Canada and New York’s Adirondacks Mountains. Being a C6 complete quadriplegic and a big man (6’5” and 265 pounds), now it is difficult for me to do most activities by myself or just with the help of my wife. Friends have stepped up and offered their time and efforts to help me participate in the activities I love.
Although it’s still difficult for me to ask for help, I am definitely getting better at it. I’ve come to realize that friends enjoy helping me as much as I enjoy what they are enabling me to do. However, helping is not as cut and dry as one might initially think. People approach me with different attitudes and expectations. Some will wait to be asked for their assistance. Some will wait until you struggle and then step in. Others feel they need to do everything for you. It’s very easy for an individual with a disability to get frustrated with someone helping too much. Their actions could easily be misinterpreted as, “I don’t think you have the ability to do anything on your own”. I must remind myself of people’s good intentions and, when necessary, tactfully intercede on my own behalf.
Friends helping me kayak
Quadriplegia has taken many things away from me. Primary among them is the majority of physical contact I had with my wife. Marge remains beside me, takes care of me, but most importantly she is still my best friend.
Andy
Although I am no longer able to be self-reliant and provide for most of my family’s needs, my life has been enriched by the kindness of both old and new friends and their willingness to step up and help empower me. How very fortunate I am!
Filed under: Behavior, Creative Ideas, Disability, Education, Observation, Reality, Sensitivity
My situation finds me home more than ever before. In the winter, the temperature and snow depth keep me inside and home most of the time. Summer, however, can also be trouble-some. Quadriplegics lose the ability to regulate their body temperature because of several different factors. Warm to hot days can raise our body temperatures, and we are unable to realize it until it has reached dangerously high levels. It can rapidly cause autonomic dysreflexia which is life-threating. So, the result is, a lot of time we stay in our homes. I decided if I was going to be spending so much time in my house, I was going to make it user-friendly and reflect my personality, interests and lifestyle, both inside and out.
I have always enjoyed watching wildlife, growing flowers, being aware of the weather and having my hands in the soil. We embarked on a plan to draw wildlife closer to the house. Even though I was born in Brooklyn, ever since college I have always lived in a rural area. Prior to my accident we had always fed birds in the winter but now decided to feed them year round and try to bring them closer to the house. We placed a feeding station just outside the window by my computer. Other feeders were placed strategically near or on certain windows. We bought and I built some feeders and bird houses. The gardening boxes were located in spots readily visible from particular house windows. Different weather instruments, such as a thermometer, weather vane (including wind speed cups) and a rain gauge in warm weather or a snow gauge in winter were placed in close proximity to each other to create a weather station. A turkey feeder was put on a back part of our lawn. These efforts have all born fruit. Two of our garden boxes I plant in annual flowers which I can see from the inside and work in when I’m outside. The same is true of our four vegetable boxes. In addition to deer, turkeys and other occasional unusual wildlife, we have a great variety of birds throughout the year and are able to watch the young being raised and given early flying lessons. These areas also provide an opportunity to take many photographs, which I also enjoy doing. Inside, in addition to all the plants, we have many pictures of places we have been to and things we have done.
I believe making a living space reflect ones interests is more easily done in a rural setting, but there are things which I believe could be done to create this type of habitat in a city. Many bird feeders attach to the outside of a window as do some nesting boxes. There are mobile flower or vegetable window boxes which can be used inside or out. I also believe some city areas have gardening plots in nearby lots or on roof tops which you may be able to utilize. The point I am trying to make here is to make your home a more enjoyable and reflective place to be. Once again think outside the box, and make your home environment your very special place.
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: Attitude, Behavior, Creative Ideas, Disability, Observation | Tags: life lesson, lifestyle, using your mind
Probably most of you have already experienced spring, but living close to the Canadian border it comes late. The entire month of May in New York State is spring turkey season. I spend most mornings from the time I’m up until noon (one can only hunt until 12:00pm in NYS) out in a blind hunting and enjoying the natural world. This year is an exception to that pattern. We have received so much rain this month that we are more than half-way through May, and I’ve only been out three times. Even so, I am still able to watch the earth spring back to life in front of my eyes. We consider ourselves fortunate to live in the country where the bleak look of winter changes into a light green and just becomes richer and fuller. The colors are not uniform but rather separated into the myriad shades of the rainbow.
Feeding Station
While I have not been able to hunt, I am still able to enjoy the natural world right from my house. Last spring I bought a Gardman Wild Bird Feeding Station Kit online for about $35. My wife put it up outside the window facing my computer. The station has a number of places to hang different types of feeders, and well as, a small waterer. The station has regular bird seed, nijer seed, oiled sunflower seeds, a hummingbird feeder and a suet feeder. The food varies from summer to winter, but birds are always around. There is, however, a greater assortment of birds in the spring. I realize how fortunate I am to be in a location to observe nature first hand. I glance up from my computer never knowing what I will be treated too. Talk about colors and hues, this spring I have seen a variety that includes: Ruby Throated Hummingbirds, Rose-breasted Grosbeaks, Cowbirds, Blue Jays, a Female Baltimore Oriole, Rufous-sided Towhee, Sparrows and Finches of all kinds, Downey & Hairy Woodpeckers, Cardinals (the color of the female’s beak is one of the most beautiful in nature), Mourning Doves and an Indigo Bunting. These birds differ in size, color, flight patterns and behaviors. How fortunate I am to be able to stop and observe part of nature’s world from my wheelchair every day.
Looking Out
Filed under: Behavior, Disability, Education, Observation, Reality, Sensitivity | Tags: control, life lesson, physically challenged, using your mind
I just finished a blog yesterday that has gone to my editor (my wife) before publishing, but now I feel guilty. How can I write about spring and the beauty of the natural world when so many of our brothers and sisters are struggling with the Mississippi River flooding and inundating their homes? Most of us with disabilities face daily frustrations that abled bodied people are totally unaware of. We can only imagine the additional burdens the floods are causing for individuals who are challenged. Whenever there are natural disasters everyone in the area is affected, but the demands must be compounded for members of the disabled community. We go on with our “normal” routine often not even thinking about what others are experiencing. Right now I am frustrated by my inability to get out because of the unusually heavy and constant rain we have been having in upstate New York. But I need to take a moment and put things in perspective. Imagine in addition to dealing with all your usual daily challenges, you were uprooted from your homes, perhaps permanently. Where would you go? What would you do? How would you survive? Over the twelve years of having my disability, my home has been modified to make my life easier and as uncomplicated as possible. Neighborhood friends are aware of my situation and keep an eye on me if I am alone. There are places I can go near my house to get some peace and quiet time. These things help provide me with quality of life. Think about being uprooted from this and going to who knows where and doing who knows what, wondering if things will ever be the same. At the very least we can keep these people in our thoughts and prayers and be thankful for what we have.
Mississippi River Flooding
