The Struggle Within the Struggle

Most people have no idea what it is like to live with a disability. Every day is a struggle in itself. Some individuals are aware of the obvious challenges, most are unaware of the less obvious majority. I recently read that John McCain, whose range of motion had been severely limited by the torture he received while a prisoner of war in Vietnam, had to have another person comb his hair because he could not lift his arms above his shoulders.

Senator Tammy Duckworth

Many disabilities are visible at first glance. If the individual, when in public, presents well, seems to be in “control” and well-adjusted to their situation people often think to themselves, that’s wonderful or will say “Wow, I could never do that!” Neither could be further from the truth. First, anyone has all the abilities they need to deal with a severe crisis, already in each one of us. When talking to students I will often ask if people like Gabby Giffords, Tammy Duckworth, Jaycee Dugard or John McCain, individuals who not only survived horrendous challenges in their lives, but they went on to become examples of strength and fortitude to others received something special at birth that nobody else got. If the answer is no, which of course it is, then that same strength and courage is in each of us.

Returning to the person with the disability who presents so well in public, it is easy to understand why people come to believe that’s what their day to day life is like. For most, like quadriplegics, nothing could be further the truth.   Every day involves a varying degree of challenges. There is always frustration, anxiety and at times depression. Lack of strength and range of motion issues is a constant problem for many.  Pain, of varying intensity, including phantom pain in areas that have been amputated or paralyzed is not uncommon. Individuals with high spinal cord injuries (SCI) bodies are unable to control their body temperature, have trouble regulating their blood pressure and are usually constantly cold regardless of environmental temperature. There is a myriad of other issues both mental and physical which present from time to time. This is our “normal”. However, one should remember, no matter how bad things are many can pull themselves together when in public which just helps perpetuate the myth.  But, for the individual there is always something to deal with.

The Times They Are A-Changin’

Those words are the title of the Bob Dylan song written in 1964 which has become a classic. The song discusses societal changes that were taking place. It covers a variety of new attitudes that were going to happen, Dylan believed, regardless of résistance. While the song says nothing about disability or the disabled community I would imagine it would be fairly easy for Dylan to add a verse today discussing societal changes happening towards individuals with disabilities.

Peta-Murgatroyd & Niles DiMarco

Just this month (May 2016) we have seen three sign posts that I would present as examples of what is happening in our society today. The most recent would be the presenting of the Mirror Ball Trophy on Dancing with the Stars to Niles DiMarco, who won the championship despite the fact that he never heard a note of music the entire time. Niles was born deaf, but refused to allow that to stop him from obtaining goals that many would believe were impossible. In my opinion the most poignant part of all the season was when they stopped all music while he was dancing so the audience could see the challenge he was dealing with.

Charlie Linville

The second event occurred May 19 when 30 year old Charlie Linville, an Afghan war veteran and amputee, summited Mount Everest. As if to remind us how difficult, dangerous and demanding this still is, within a couple days of his accomplishment three climbers died while trying to summit.

The final event occurred earlier in May as the Invictus (which means unconquered) Games the place for three days in Orlando Florida. The concept of the games was the brainchild of Prince Harry of the United Kingdom. Knowing firsthand the sacrifices the men and women of the armed forces make to defend our freedom and way of life he decided to begin the games as a tribute to those who had made personal and those who have made the ultimate sacrifice. The Invictus Games featured 500 competitors from 15 nations: Afghanistan, Australia, Canada, Denmark, Estonia, France, Georgia, Germany, Iraq, Italy, Jordan, Netherlands, New Zealand, United Kingdom and the United States of America. We have reached a point where our society is so interested in happenings like these that the games were televised on ESPNU. The courage and strength of these individuals were on display for the entire world to see.

The entire United States team of athletes gather on stage during the closing ceremony at the Invictus Games, Thursday, May 12, 2016, in Kissimmee, Fla. (AP Photo/John Raoux)

It is my feelings that these and other events in our society show that The Times Are A-Changin’ and most people are becoming more receptive to those with differences regardless of how they present themselves.

Chairbound Sportsman

For an outdoors-man who becomes disabled and ultimately wheelchair-bound the struggle to regain quality-of-life can be overwhelming. New skills must be developed, in spite of compromised abilities, in order to return to the lifestyle they love. But, while daunting, the development of new skills to replace the old ones lost is within their grasp if they persevere and refuse to accept failure as an outcome.

The higher the level of injury the greater the challenge. We are just beginning to see the development of new types of recreational wheelchairs, both manual and power, being developed for those who want to return to the outdoor life. Four-wheel-drive and track wheelchairs are becoming more widely available. However, in spite of these changes, especially with an activity like hunting, chances of returning to the solitary hunting lifestyle will be nearly impossible.

Even with these new, highly specialized chairs there is still the need for additional help from other able-bodied individuals. In order to hunt, an individual in a chair will also need some type of support system. For many individuals who become disabled the loss of self-sufficiency and self-reliance is one of the most difficult issues for them to face, which makes asking for help difficult.

Hunting requirements are very different depending on the region of the United States. Prior to my accident, I hunted in many states along the East Coast. Shots are rarely taken over 150 yards and in most areas you’re never far from civilization. While I have never hunted west of the Mississippi River I’ve received quite a bit of information from my friend Andy Dahmen, who lives in Utah, and has also hunted in Idaho and Wyoming. This fall he shot a bull elk that was over 560 yards away. The distance of the shots, the vast amounts of terrain that must be covered and the size of the animals harvested all demand a greater support system for a hunter out West. In the East you can usually get by with a friend or two, but out West is a different story.

Russian Boar harvested in Idaho

Hunting out West for an individual who is in a wheelchair requires a number of able-bodied individuals to assist. Fortunately, there are people who understand and have formed volunteer organizations to assist the disabled. One of these groups the Utah chapter of Chairbound Hunters is titled Chairbound Sportsman. I have taken their Mission statement verbatim off their website so you can understand what these individuals are trying to do.

“We create hunting, fishing and outdoor opportunities for wheelchair bound individuals and Disabled Veterans. Outdoor Activities are hard enough, but retrieving game, is next to impossible. With our volunteers, we can help with the hard stuff and make their outings a success. Our Goal is to offer experiences to those that thought they could never get into the outdoors again. Volunteers, Landowners and Sponsors are Critical to our success.”

Getting Ready to Roll

It is difficult for many individuals to understand what their kindness and thoughtfulness means to the participant. Without the support from others, many in the disabled community would be unable to participate in the activities that provide for our quality of life. Handihelp does not accept advertisement on the website. I would, however, recommend either volunteering or make a donation to keep organizations like these functioning.

Warrior Transition Battalion

On October 9, 2015 I had the special privilege to be able to address the 3rd Battalion, 85th Mountain Infantry, Warriors Transition Battalion on Fort Drum. Fort Drum is the home of the 10th Mountain Division, which is the most deployed division in the Army. The invitation was extended to me by the Battalion Chaplain Peter Bahng, who had stopped at the Handihelp display in August during the Outdoor Adventure Day on post.

Friday began with the luncheon at which time I had the opportunity to speak to many of the wounded Soldiers personally in an informal setting. A display board was set up containing pictures of some of the different activities I have engaged in and a digital picture frame showing adaptions from Handihelp.net was also running. My wife Marge and I had an opportunity during the luncheon to sit and chat with a Lieutenant Colonel Johnson the Battalion Commander and his wife.

Displays at luncheon

My talk was held in the post-main chapel and there were over 100 people present. This included not only the Soldiers and their families, but also nurses and support staff. There were displays of adaptions I had made that allow me to continue to pursue the activities that give me quality of life. Since I knew I had no real understanding of what they had been through, I spoke about my accident, the struggles and challenges I have faced over the past 16 years and lessons I have learned that have enabled me to regain quality of life. We spoke about the personal inner strength that exists in each and every one of us and if there were any doubts I mentioned a few individuals who had not only risen above catastrophic injuries, but even went on to inspire others. Individuals like John McCain, JR Martinez, Bob Woodruff and Gabby Giffords to mention just a few.

Some of the Soldiers

A PowerPoint presentation was then used to visually reinforce some of the ideas and concepts we were talking about. In telling them what I had learned from my struggles with quadriplegia I mentioned the following:

* Your mind is a powerful asset use it
* Recovery and return are a process and so will take time
* There is more than one way to solve a problem
* Know there is a way that will work
* Try to keep solutions simple
* Don’t get discouraged and give up
* Think of failure as an opportunity for learning and growth
* Think outside the box
* Be willing to change and modify
* Be open to the suggestions, ideas and help from others
* Empowerment or helplessness is a choice

In conclusion, the fact is that while we have little control over what happened to us, we have a lot of control over what we do about it. What I had showed them was not to show what I and others had done, but rather to help them realize the potential of what CAN be done by anyone who is willing to commit themselves.
Let me finish by saying what an inspiring group of men and women this was. We can all be proud of these Soldiers and the sacrifices they and their families have made for America and our way of life.

Certificate of Appreciation