Filed under: Disability, Attitude, Independent Living, Behavior, Ability, Reality | Tags: control, depression, suicide, life lesson, using your mind
Vice President Joseph Biden, while speaking at the Tragedy Assistance Program for Survivors’ (TAPS) 18th annual survivor seminar to commemorate Memorial Day 2012, deviated from his prepared remarks to share his thoughts on the issue of suicide. He told the families of fallen soldiers he was so distraught following an automobile accident in 1972 that claimed the lives of his first wife and daughter, that he himself had entertained thoughts of suicide.
Many of us in the Disability Community struggle from time to time with the issue of suicide. From my own personal experience, even though it’s been over 13 years since I was injured, it still comes to mind at times when I am struggling with depression and extreme frustration. Life with a disability can frequently seem overwhelming. This is especially true at the onset. Often suicide presents itself as a solution to all the problems one faces. Vice President Biden said: “For the first time in my life, I understood how someone could consciously decide to commit suicide. Not because they were deranged, not because they were nuts, because they had been to the top of the mountain, and they just knew in their heart they would never get there again.”
For many of us our disabilities will prevent us from ever returning to the top of the mountain, and we know it, but in time, I believe, most of us come to accept that and move on accordingly. It is being at the bottom of the mountain or starting to climb up for the first time when suicide is thought of as an option. Many of the individuals with disabilities to whom I have spoken admit they have struggled with these feelings. So, it is worthy of taking note that if you have thoughts of suicide from time to time, you certainly are not alone. For a while, I contributed blogs to a website for the disabled that refused to publish anything I submitted on suicide or severe depression. In my mind they were omitting an important subject from discussion. What message were they conveying to their readers? That life is always good? Or that one should never get depressed, and if you have thoughts of suicide there is something wrong with you? What a disservice and loss of opportunity to truly connect with individuals with disabilities.
The psychologist at Craig Rehabilitation Hospital once told me that being depressed and feeling sorry for yourself was an okay place to visit but not a place to set up permanent residence. As Vice President Biden said in the conclusion of his remarks “Folks, it can and will get better…” and most of us know that. We may have to remind ourselves of that or have somebody remind us of it, but we know it is true. We may never get to the top of the mountain again, but that does not mean we must stay at the bottom; rather it means we must continually climb.
Take note that the two “Hs” in the Handihelp logo form a ladder, to help you start your climb.
Dave Morrell
Climbing
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: 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: Ability, Adapting Equipment, Attitude, Behavior, Community Inclusion, Creative Ideas, Disability, Education, Independent Living, Observation, Reality | Tags: adapting, control, lifestyle, physically challenged, quadriplegia, using your mind
Christopher & Dana Reeve
Several months ago I was contacted by the Christopher & Dana Reeve Foundation and asked if they could do a profile on me which they did: “Once a Teacher, Always a Teacher”. This January they contacted me again and based on the information on my website I was asked to start and moderate a group on the Christopher Reeve Foundation website. The group is called Learned Empowerment and I would like to extend an invitation to you to join. You must first join the Christopher & Dana Reeve Website which is free. I hope the group develops into a place where both individuals with a disability and those in any way affected by the disabled community can share ideas, shortcuts for various tasks and mutual support.
Filed under: Ability, Adapting Equipment, Attitude, Behavior, Education, Independent Living, Observation, Reality | Tags: adapting, control, life lesson, using your mind
I sat in the chair looking at the piece of paper I had just dropped on the floor. I needed the paper for what I was doing so I had to pick it up. No big deal. Right? WRONG, it was going to be a problem. I couldn’t bend over to get it and I couldn’t get out of my chair and walk over to pick it up. You see the chair I was sitting in was a power wheelchair. Many of the simple reflex actions I used before my quadriplegia still came to me rapidly when I needed to solve a problem. Today was different and I knew it. My wife and my nurse were both gone at the time and so was the option that they could pick it up for me. I knew I had a major challenge before me the resolution of which would affect me the rest of my life.
As a teacher I had been working with students for over 34 years and was involved with some unique adventure based activities which tried to teach students to find alternative ways of problem solving. Mostly as a result of these experiences I truly believed there was a simple way to pick up that piece of paper. The real challenge I faced was to figure out how to do it. The solution finally came to me although it was not that day. Like most of my problem solving creations the answer was the result of hard work, frustration, failure, modifications and persistence. The ultimate success of my solution encouraged me to move on and find other simple methods of adapting ways l could solve other everyday challenges.
I believe the key lies in one’s attitude. It is human nature to rely on methods and solutions which have been successful in the past. This often encourages us to use only limited means to accomplish a given task. When speaking to a group I like to use the example of catching a fish. If I choose ten people in the audience and ask them to catch a fish for me, chances are great the majority would grab a fishing pole and head to nearby body of water. When initially dealing with the challenges placed on those of us living with a disability, I think we often try to solve problems using the same skills we used before our impairment. This approach can create extreme frustration and an acute awareness of the limitations placed on us by our condition. Now suppose I presented this same challenge to an audience of people from the United Nations.
It is a real probability we would see a variety of methods which could include nets (both casting and stationary), wiers, noodling, spears, spear guns, bow and arrow, or use of other animals, such as cormorants and many additional ways. So in reality, if we think about it, there are usually many ways to solve a particular problem. The first attitudinal change must be the understanding that more than likely there is a solution for what you are trying to do. Begin by freeing ourselves of cultural restraints. At times such limitations are really in our own minds. Learn to think outside the box and experiment with different approaches. I have become convinced over the last twelve years that attitude is much more important t than ability to individuals who are physically challenged. Looking at a new situation not as a problem but as a challenge needing to be met, may actually set one’s mind free of the mental restraints which prevent finding a solution. This initial attempt at finding a solution, I believe, is of critical importance because it will establish a lasting mindset. I can or I can’t; which will have greater significance for the future? If we give up or allow failure to deter us from continuing, the implications are obvious. Failure, if approached with the right attitude, provides opportunity for learning and hence for growth which eventually can lead to success. If a small child decided there is no reason to continually struggle to get up after falling down time after time, he or she would never learn to walk. I had a graduate student in a workshop sum up my supposition in an e-mail she sent me: ”I was particularly struck by your juxtaposition of self-created learned helplessness (I can’t do that, so how can I do this) with what I might call learned empowerment (I can do that, so why can’t I do this?)”
Some suggestions I would make in regards to finding alternative solutions:
1. Know there is a way.
2. Keep things simple.
My Poor Man’s Trigger Adapter cost under $2.00 to make
3. Don’t get discouraged and give up.
Professor Randy Pausch in his book The Last Lecture wrote, “The brick walls are there to give us a chance to show how badly we want something”.
4. Think of failure as an opportunity for learning and growth.
5. Observe with an active mind.
After noticing hockey and lacrosse players had placed continuous wrapping of tape on their sticks to prevent their hand from sliding past a spot, I decided to do the same. The placement of these “stops” allows tool manipulation without a strong grip.
6. Think outside the box.
7. When possible make tools multi-functional.
Try to create tools that can be used for different purposes.
8. Make tools interactional.
Any one of my tools can be used to pick up a different one if I should I drop it.
9. Be willing to modify.
I am constantly revisiting the tools and ideas I have already come up with to try and improve them or make them more functional.
10. Be open to the suggestions and ideas of others.
11. Remember success builds success.
Filed under: Ability, Adapting Equipment, Attitude, Disability, Independent Living | Tags: hunting, lifestyle, physically challenged
I have waited for this moment for a long time. May 26, 2010 – 9:15 AM. Today I harvested my first turkey in 11 years. I had been an avid hunter prior to my disability. I believed I would never be able to hunt again, especially by myself. Today’s success was the result of the labors of many people: my wife, who walked me out and help me set up, my nurse Rhonda, who came at 6 AM the mornings in May so I would have more time to hunt, my neighbor Mike, who allows me to hunt his land, my friend John, who gave me his time to set up blinds made out of snow fence and camouflage material, and so it goes. My wife likes to say “It takes a village”.
The blind
I am also proud of myself. Over the 11 years, I got discouraged; turkeys often were close enough to harvest but something always went wrong. In the beginning it was my inability to camouflage my wheelchair well enough, then my finger couldn’t pull the trigger, or I had a muscle spasm which alerted the turkeys to my presence and were instantly gone. But I persisted and attempted to correct the challenges as they presented themselves. But at the end of each spring I had the same results — NOTHING. Often it was a process of trial and error, but gradually my efforts began to improve my chances. I created a trigger adapter which allows me to fire the shotgun using my mouth. Not only does this solve the problem of trying to find the trigger, but it also allows me to use both hands to steady the gun. At many points along the way it would’ve been easy to give up and quit. I know from experience it’s a lot easier to give advice to others than it is to take it myself. So get discouraged, get frustrated, but don’t give up.
My trigger adapter
One of the things I like the most about hunting is that it is totally irrelevant to the game that I am an individual with a disability. To the turkeys I hunt, I am just another predator and that’s all I ask for. Today was definitely a day worth waiting for.
The turkey on my lap. On my right knee is a turkey call I adapted to sit on my thigh so I could use one handed
Filed under: Adapting Equipment, Disability, Independent Living, User Friendly | Tags: adapting, creative idea, User Friendly
Flower Box In Bloom
Would you like to raise some flowers and/or grow some vegetables for your own consumption? Raised bed garden boxes will let you do that and it is great exercise. Each spring the soil must be worked up and planted. During the growing season the vegetables must be weeded and thinned. If the weather is not cooperating the plants must be watered. The wilted flower heads must be picked off the plants (called deadheading) which is great exercise for fingers. A box does not take up much room if space is an issue. Prior to placing a box, the area under it must be prepared. This is not necessary if it will be placed on cement or any other solid surface. If placed on the ground you must assure good drainage.
Plans For A Raised Garden Box
The height of the box opening should be a few inches taller than the armrests of the wheelchair. The width of the growing area should be several inches less than twice the gardener’s arm length which will allow one to cover the entire planting area. Built from pressure treated lumber, the box is open on two sides so one can drive a wheelchair underneath it and work straight on.
The first year my boxes presented some unique problems because of the construction. The 2” by 8” which made up the planting area did not allow for the soil to be deep enough for vegetables so most of the vegetables planted did not grow very well. The following year, as you can see from the picture, we added about 3 inches to the height of the planting area. This allowed adding another 250 pounds of soil to the bed. Also, in an effort to cut down on moisture evaporation we added Hydro-Sorb to the soil. Hydro-Sorb retains water and releases it a little at a time. These two changes made the boxes much more successful. We did not find it necessary to increase the depth of the flower boxes.
I have 6 boxes, four I plant with vegetables and the other two with annual flowers. I enjoy working these boxes very much. I use adaptive garden tools which can be purchased online. The vegetable boxes can grow salt potatoes, broccoli, onions, baby carrots, beets and garlic. Gardening is good for many different reasons.
Working at one of my garden boxes
Filed under: Adapting Equipment, Creative Ideas, Disability, Independent Living, User Friendly | Tags: adapting, control, creative idea, lifestyle
This morning when I open my e-mail I found the most interesting letter. Dominic Valento wrote me about a website he constructed called Button Board buttonboard.com , which allows an individual to surf the web using just a mouse. He built the website for his own personal use but was wondering if it would be helpful to other people who have limited range of motion or other problems. I tried the website and it works great. It amazes me the technological skills that some people have. I encourage you to try the website and forward it on to anybody you believe would find it useful. Please if you have created something like Dominic which would be useful to others contact us.
Picture of Button Board
