I am happy to provide some heartwarming news about my nurse’s son Devin. He is out of danger and after about four weeks is out of the hospital. He had a strep infection which had entered his blood stream. It took a while for the doctors’ to figure out what was wrong because he was not stable enough to run many tests. His blood platelet count was so low fellow sailors were donating blood for him. Since he was unable to eat a feeding tube was inserted. Breathing was difficult so he was intubated. With this illness finally under control Devin left the hospital 20 pounds lighter. He will be on convalescent leave for two weeks while he regains strength and weight and then is expected to return to active duty.
Filed under: Community Inclusion, Education, Observation, Reality, Sensitivity | Tags: life lesson, lifestyle, using your mind
You can’t be a member of the disabled community without having asked yourself that question many times. Most likely there is no plausible answer, which is why we keep asking the question in the first place. When I speak to groups I am amazed that so many people believe life is safe and that we are almost always secure in our environment even though I believed that myself before my own accident; life altering occurrences were something that happened to others. A while ago I wrote a Blog entitled “Wishes and Daydreams” (April 2010) where I talked about my envy of my nurse’s son who was graduating from high school and entering the United States Navy to become a corpsman. Well, almost three years have passed since I wrote that and he is a corpsman stationed at a large naval hospital on an island in the Pacific Ocean.
Devin was home on leave in February and looked terrific. He’s just 20 years old, is a fine young man and a credit to his family and country. While here, he expressed concern for several of his buddies from corpsman school who had been assigned to the United States Marine Corps and sent to Afghanistan. Devin was concerned for their safety and felt he should be there, too.
Last week he was not feeling well but thought he was just getting a cold. Long story short, he is now in the intensive care unit of the hospital, seriously ill with an unidentified illness serious enough for the Navy to fly his mother and father to be with him. His condition is such that he is not stable enough to be medevac’d to the mainland. How ironic, his buddies are at the end of their tours in Afghanistan and coming home, and he is the one gravely ill. Why?
What a terrible reminder to all of us of the frailty of life. Most of us have already experienced it first hand and had the lesson driven home to us in an all too real way. To stress how precarious life can be, the staff at Craig Hospital, where I went for my rehabilitation, often refers to individuals without disabilities as TABS (Temporarily Able Bodied). We can reduce our chances of having major trauma by following cautious behaviors. The greatest daily risk faced by most Americans is automobile travel. The potential risk of being hurt in a car accident, like most risks, can be reduced by following certain procedures such as wearing your seatbelt, driving within the speed limit, not driving when your ability is impaired by alcohol or drugs, and avoiding behaviors which distract your concentration from driving, like talking on a cell phone. However, all the precautions in the world guarantee nothing. We are still vulnerable and often at the mercy of circumstances beyond our control.
I believe there are a number of lessons here for everyone from this situation, not just the disabled community. We must take time to enjoy every day. We should realize that our situations could still change in an instant. Instead of feeling sorry for ourselves, we should accept what has happened to us and make the best of our situation regardless of our own circumstances. Finally, we can stop asking why and just accept what is. We will be much less frustrated, mentally healthier and better off in the long run. It seems to me the best answer to the question WHY comes from Travis Roy who 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.”
Filed under: Ability, Adapting Equipment, Attitude, Behavior, Disability, Reality, User Friendly | Tags: control, dietary considerations, inexpensive solution, lifestyle, nutrition category, quadriplegia
Lose It is an app that is available free on iTunes and can be used with iPhone, iPod Touch or an iPad. It is located in the Health and Nutrition category and is designed to help people lose weight. While it is set up for the general population, it lends itself to easy adaptation for any individual with a disability. Prior to my accident I was 6’4″ tall and weighed 215 pounds. Now, 13 years later, even with major dietary adjustments, I weigh close to 260 pounds. Being a quadriplegic, weighing oneself is difficult, and using a scale designed to weigh individuals in a sling, can be costly. I have found an inexpensive solution to this problem. I use a Big Buck scale that can be purchased at Cabela’s for $45. It is intended for weighing deer but still is surprisingly accurate.
The following description of Lose It is taken from iTunes:
“Succeed at weight loss with Lose It! Set goals and establish a daily calorie budget that enables you to meet them. Stay on track each day by recording your food and exercise and staying within your budget. The average active Lose It user has lost more than 12 pounds and more than 85% of our active users have lost weight. Lose It is completely free — get started losing weight with Lose It today.”
Lose It is simple and easy to use. It has a large database of food and exercise which can be easily added to. After entering a food or exercise once, it becomes part of your personal database and can be selected the next time with a simple click. What lends itself so nicely to adaptation is the fact that you can add both foods and exercises to the program. In the exercise category I was able to add Hand cycling and several other modified activities with the amount of time I do them and the number of calories I burn. Existing categories within the exercise section can be manipulated to reflect your level of participation.
For those of us who have specialized dietary considerations in addition to keeping track of calories, Lose It can be set up to monitor Fat, Cholesterol, Sodium, Carbohydrates, Sugar, Fiber and Protein in our daily diets. It also has a bar code scanner for packaged products to make entering specific nutritional information easier. Lose It has an extensive menu of foods from both the supermarket and many well-known food chains. Simple, user-friendly, adaptable and free: what more could you ask for? Give it a try; you have nothing to lose but weight!! Available now for your computer at LoseIt.com
Summer Before the Accident
Thirteen Years Later
Filed under: Ability, Adapting Equipment, Attitude, Disability, Education, Simple Solution | Tags: adapting, control, creative idea, life lesson, physically challenged, using your mind
As we all know a large number of products made for individuals with disabilities are greatly overpriced. Among the many unfortunate results of this is the fact that many people from the disabled community are prevented from returning to the activities that provide them with quality-of-life such as hunting, kayaking, and biking to mention just a few. This is one reason why Andy Dahmen and I designed what we call the Universal Chair Mount. Our idea was to place the prints on the Handihelp website where people could download them and then have a local craftsman make the mount, greatly reducing the cost. We drew up a rough set of blueprints and decided to have our mounts made locally. Mine was made in upstate New York, while Andy’s was made in Utah. Imagine our surprise when we exchanged photos of each other’s finished products.
When I stopped to think about this, I realized there is a good lesson here. As you can see from the pictures, we ended up with two very different looking chair mounts, and that’s the point. The plans, pictures and ideas shown on the pages of the Handihelp website should serve as a guide or starting point, rather than a blueprint which must be followed exactly. When you look at a “tool” or piece of equipment you should ask yourself, what do I want this to do for me? What parts are essential to its function? On the mount, for instance, there are 3 features that all chair mounts must have in common: a hole for the post to go into, a mechanism to lock the post in place, and a means to attach the mount to a wheelchair. How these necessities are produced is up to the builder. Look how different our two mounts are; yet, they both attain the desired outcome, a functional universal chair mount.
Handihelp provides possible solutions for accomplishing certain outcomes, but they should be looked at as starting points instead of “set-in-stone” solutions. What is offered here is the start of developing an attitude toward dealing with the challenges imposed upon us by our disabilities, as well as a source of solutions.
Filed under: Adapting Equipment, Attitude, Behavior, Disability, Education, Reality, Sensitivity | Tags: adapting, creative idea, life lesson, physically challenged, using your mind
D. H. Lawrence, the early 20th century English novelist, storywriter, critic, poet and painter wrote, “I have never seen a wild thing feel sorry for itself. A little bird will fall dead, frozen from a bough, without ever having felt sorry for itself.” How the hell did he know?
In December 2005, a 3 month old female dolphin was found wrapped in the rope line of a crab trap near Cape Canaveral Florida. She was taken to the Clearwater Marine Aquarium in Clearwater, which is a marine rescue center. The dolphin, named Winter, struggled to survive. The rope had cut off blood circulation to her tail which resulted in, not only the loss of her tail, but several spinal vertebrae too. Few experts believed the dolphin could survive major trauma like this. Winter not only survived, she developed a new method of propulsion. The new movement she used to move herself through the water while amazing, however, was detrimental to her spinal cord.
Winter
A well-known prosthetic specialist heard about Winter and offered his services. The challenges looked to be overwhelming: artificially reproduce one of the most powerful propulsion systems in the world, finding a way to attach it to a dolphin, and then train a wild animal to use it. Mike Walsh, Winter’s lead veterinarian, said:
“We put together a team who doesn’t know what ‘no’ means.
As long as you’re willing to try, you can make a big difference.”
After a lot of trial and error, a successful apparatus was finally developed. This story is responsible for the movie, “Dolphin’s Tale”, which is a touching movie for the entire family. In the movie, Winter plays herself. If you see it, be sure to watch after the end of the movie for some very special scenes.
There are lessons here for all of us in the disabled community, not only from the behavior of the humans but also in Winter’s behavior: their collective refusal to give up or accept failure as an answer, their ability to find alternative ways of attacking a challenge, their love and enjoyment of life itself, and Winter’ attitude of accepting what happened and to move on. The team’s persistence led not only to the dolphin’s prosthesis, but help for human amputees as well. Winter’s early rejection of the prosthesis was not due to the device itself, as originally thought, but rather to the material that was being used to attach it to her body. After realizing this, the team developed a new gel sleeve which adhered to her body with suction. This gel material is now being used with veterans returning from Iraq and Afghanistan. Additional new materials are also being developed to stand up better to salt water.
Once again, we see that positive attitude, thinking out of the box and relentless perseverance reap rewards and success.
Winter's Prosthesis and Gel Sleeve
Filed under: Ability, Disability, Education, Observation, Reality, Simple Solution | Tags: control, lifestyle, physically challenged, using your mind
The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.
Here’s an excerpt:
A San Francisco cable car holds 60 people. This blog was viewed about 2,800 times in 2011. If it were a cable car, it would take about 47 trips to carry that many people.
Click here to see the complete report.
Filed under: Ability, Attitude, Behavior, Disability, Education, Reality | Tags: adapting, control, life lesson, quadriplegia, using your mind
I am always stressing about attitude in dealing with the challenges of having a disability. I have even gone so far as to say that attitude is more important in dealing with a disability than ability, and I really believe it is. But what happens when your attitude deteriorates? It doesn’t happen to me often, but it does happen and it most likely happens to you also! I like to compare my situation to that of a juggler who can keep just so many objects in the air at any one time. It doesn’t matter whether the objects are the same or different, just add one more and everything comes tumbling down.
Well, I have too many objects in the air right now, and as a result my attitude has crashed. The last week of November into early December I started getting severe headaches followed by mental confusion. Saturday and Sunday December 3rd and 4th I went to the local hospital but on Monday I was transported to Upstate University Medical Center in Syracuse, New York. I had suffered a “chronic” subdural hematoma (bleeding on the brain). I was scared, confused and very aware how helpless I was. I thought about all the limitations that my situation places on me. When I’m in this frame of mind, it’s hard to simply consider them as challenges. I begin to wonder if I really have quality-of-life, and when I’m like this seriously question if my life is worth it. I’m going to die someday anyway, so why postpone the inevitable. Giving up would be easy. It’s going on day after day that’s tough. If I stop and think about this for a while, I remember how hard I fought the first six months after my accident doing whatever I had to in order to survive; however, that was at age 55, and now I’m 68. When I get in this mindset it’s hard to put the limitations aside.
The last ten years of my teaching career was spent with a class of high school students who had emotional or behavioral problems. I often found my- self doing more counseling than teaching. Most of them thought life had given them a lousy deal, and they were right. At times, I feel the same way, so I remind myself of what I told them. The Gambler, sung by Kenny Rodgers was current at that time, so we would talk about its meaning; life deals you a hand of cards and you must play them. You can wish all you want but the cards aren’t going to change much. The gambler knows this so he advises:
“If you’re gonna play the game, boy, ya gotta learn to play it right.
You’ve got to know when to hold ‘em know when to fold ‘em,
Know when to walk away and know when to run….
Now, every gambler knows the secret to survivin’
is knowin’ what to throw away and knowing what to keep.”
So according to this old sage, it’s not the hand you’ve been dealt that’s important but rather how you play it that determines the outcome
“Cause every hand’s a winner and every hand’s a loser,
and the best you can hope for is to die in your sleep.”
What is the gambler trying to tell the listener? I believe it’s that life is like playing a card game and how we handle life is all up to us. Our success is more influenced by our attitude then the cards we’ve been dealt.
“Happy” New Year? The choice is ours!
Filed under: Adapting Equipment, Disability, Education, Simple Solution, User Friendly | Tags: control, hunting, using your mind
A major disability takes so much away from the individual. I’ve lost not only the things people normally associate with quadriplegia, but so much more; such as control of body temperature, intimacy, ability to act spontaneously to mention just a few. Why should we be deprived of any more of the other things we love to do? I often reflect on the words of Christopher Reeve:
“I refuse to allow a disability to determine how I will live my life. I don’t mean to be reckless, but setting a goal that seems a bit daunting actually is very helpful toward recovery.”
With these words in my mind, I faced my new life with quadriplegia. That was over 12 years ago, and a lot of things have changed since then. After my injury, I was shocked and outraged at the exorbitant pricing of articles sold specifically for individuals with disabilities. What really upset and perplexed me is that many of the online “stores”, promoting these products, were run by people with disabilities. Many individuals, especially those newly disabled, are often prevented from participating in activities because of this overpricing. My early “tool” development was an outgrowth of efforts not to let my situation prevent me from partaking in things I used to enjoy and not to pay the ridiculous prices. I created Handihelp.net with the idea of providing simple alternatives that are either inexpensive or costs little to be made.
Much of the interest on Handihelp centers on continuing activities that individuals enjoyed prior to their disability and principle among those activities is hunting. Many of the e-mails I get are similar to the following letter from Dan:
“I am a C-5 6 quadriplegic complete… . I broke my neck over 40 years ago, and have been trying to find a good wheelchair mounted gun holder and trigger mechanism. Before I got injured I was an avid hunter, fisherman, and son of a farmer. I have tried different mounts but they tend to get very pricey. I would love to be able to hunt Whitetail deer with my brothers and one great friend who has been through this with me from the beginning. I’m not well-off but I’m very happy. I have a Ruger .223 semi-automatic rifle that I would love to use as a groundhog gun. I have a bold action 30-06 that I bought the year before I got hurt never getting to use it. I don’t think I can use the bold action, so I would use it one shot at a time. I truly appreciate any help and guidance you can give me in obtaining this dream. This has been a dream of mine for the last 40 years. To be able to use my rifle and shotgun would be the coolest.”
Over the years my own efforts to “create” additional equipment became more ambitious. Letters like Dan’s helped me decide to try and find some relatively inexpensive equipment which could be easily modified for use by a person in a wheelchair. This, by far, would be my most challenging effort to date. My research led to Bog Gear in Fredricksburg Texas, who after hearing my story, donated several pieces of equipment for me to experiment with. After some minor modifications it became the Inexpensive Gun Mount (IGM) which cost about a $110 and can be purchased from Cabela’s.
I developed my Poor Man’s Trigger Adapter (PMTA) for my personal use and later I put it on my website. It can be made and placed on a weapon for less than $2. The final piece of apparatus was a chair mount to attach the gun mount to a wheelchair. With input from Andy Dahmen, a fellow quadriplegic hunter, Doug, of Colonial Welding and Don from Don’s Pro Shop we came up with a device we believe will be relatively inexpensive to make and can be placed on almost any wheelchair. Plans for the Universal Chair Mount (UCM) can now be downloaded from Handihelp and constructed by a craftsman in your area hopefully, further reducing the cost. You should be able to get the mount made for around $80. All of the equipment necessary to hunt should cost around $200.
The (UCM) is not to be limited to just gun use, any piece of equipment such as a camera, table, binoculars, fishing pole adapter, telescope etc. which is supported by a 5/8” post can be held by the UCM. Handihelp plans to work on additional pieces of equipment to be used with the UCM. As projects are created information will be placed on the website.
The fulfillment of this project far exceeds any ideas I had when I first started the website in January 2008. To help other quadriplegics, like Dan, return to the activities they love and to demonstrate to others what is possible when you free yourself of perceived limitations is very satisfying.
Universal Chair Mount
All these plans can be found on my website.
Filed under: Attitude, Behavior, Disability, Education, Love, Observation | Tags: adapting, control, life lesson, quadriplegia, using your mind
The CD player clicked off, and my struggle began. For months went from mild anxiety to full blown night terrors. I would thrash back and forth in the bed, shaking, crying uncontrollably and paranoid. They started bringing me out to the nurses’ station every night. The rehabilitation hospital even brought in a psychiatrist from outside hospital staff to evaluate me. As things got worse they had an attendant stay with me through the night. Nothing worked. I was so scared I would do anything, use anybody in my effort not to be alone. The silence scared me, the dark scared me and being alone was more than I could handle. When the psychologist asked me how I could combat this, I said to use meditation and imaging. I had used both very successfully in my life prior to the accident, so I believed these strategies would work. I was ready. Then the CD player ran out of music, clicked off, and I went berserk again. It not only continued when I got home, it got worse. I threw myself violently back and forth in the bed screaming, crying and threatening to throw myself out of the bed. My wife was not a rehabilitation specialist; she was a fifth grade teacher. She had no support group to fall back on, just her and her out of control husband. Night after sleepless night this went on and on. We entered into a frightening nether-land, both of us close to exhaustion from the crazed, sleepless encounters. Eventually I ended up at the local hospital for a mental evaluation. I began seeing a psychiatrist for chemical intervention. It did little good. Finally, to his credit, he admitted to us he’d run out of drugs and could do little more. He recommended a Sleep Study be done in the local hospital. After my night in the hospital, they immediately put me on a Continuous Positive Air Pressure (CPAP) machine and everything instantly changed the first night.
Recovering from a major disabling experience is a process, and it is critical for people to understand that. One of the doctors at Craig Hospital explained to my wife, that at first you will have more bad days than good. Then after a while the good days and the bad days will be about even. Finally, after another period of time you will realize you’re having more good days then bad, and this trend will continue as time goes on. After more than twelve years I can attest to the truth of this concept. I think it is hard for people in the early phase of recovery to believe that things will ever change, but they will. The other night I woke up at 3:30 am and could not go back to sleep. I sat up in bed, took off my CPAP mask and grabbed my iPad. I put on my headphones, hit the Favorites playlist and began playing solitaire. After several hours I started to get tired and, leaving my headphones on, laid back down and closed the iPad returning to the darkness. I was unable to sleep so I lay in the dark and was taken to a place of peace and tranquility by Whitney Houston, Celine Dion, Lionel Richie and others. It was hard to believe I was ever so terrorized by the nighttime.
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.
