The phone was ringing. Shortly after my wife answered it, not only did I know it was our son, but I knew why he was calling. After a couple minutes she shouted to me “Mark wants to talk to you.” As I turned on the speaker my son said “Happy Anniversary.” I couldn’t believe it! We’ve been married 52 years. As our conversation came to a close, I told Mark that we’re going out to dinner at an extremely nice restaurant not far from here. Always looking to make a joke I said who knows “maybe I’ll get lucky tonight.” There was no chance of me getting lucky in the way this quote is usually used. Abstinence, while a choice for some, was just another behavior forced on us by my quadriplegia.
Wedding Day 1965
It is not unusual when I take questions and answers from a group I’d just spoken to for someone to ask me what do I miss the most. I always answer intimacy. Not sexual intercourse, which it 74 would probably not be a major activity anyway, but rather the subtle displays of affection that take place during a normal day. The warmth and security of a hug, a touch as my wife passes by or most of all snuggling in bed. All of these little shows of affection are extremely difficult for someone who was paralyzed and confined to a wheelchair. Once I’m placed in bed, I can only move my arms and my head. Being unable to roll on my side makes snuggling next to impossible. A hug with a person in a wheelchair is awkward at best. The physical presence of the chair combined with the fact that my wife has to bend way over makes contact difficult and as a result usually brief. At night or in the morning while I am still in bed, I will notice my wife walked by and touch my foot or leg. If I wasn’t looking I would never know that it had taken place.
In reality being a quadriplegic takes a lot of common everyday occurrences away from you. However, there are some things that you become more conscious of as a result of your disability. One of the first things that would be mentioned is the observation that the majority of people in our society are good, caring and loving individuals who want to do the right thing. Unfortunately, most programs on television or the Internet tend to focus on the small percentage of individuals who do not fall into this majority.
To get back to the original statement I made to my son little did I know that it was foreshadowing for the dinner ahead. Our waitress at the restaurant also works in my doctor’s office so she knew who we were. In the course of the dinner we mentioned to her that it was our 52nd wedding anniversary. When she bought our dessert there were a couple candles in it and we laughed as we blew them out. When it came time to pay she informed us that someone, who wished to remain anonymous, had already paid for our dinner. While the restaurant was pretty crowded we did not recognize anyone we knew. For some reason someone had reached out and touched us. People should know the strength and ability to persevere, we draw from such acts of kindness. The reaching out of people like this helps give us the strength we need to move through the struggles that we face in our daily lives. Thanks to all of you who reach out to all of us. Oh, and by the way I did get lucky that night.
Our family on our 50th anniversary
Posted in Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friends, Friendship, Humor, Love, Observation, Reality, Sensitivity, Stuggling
Tagged 50th wedding anniversary, life lesson, lifestyle, physically challenged, power wheelchair, quadriplegia, relationship, society
Posted in Behavior, Community Inclusion, Disability, Education, Observation, Reality, Recreation, Stuggling
Tagged depression, Insensitivity, quadriplegia, society
The doctor thought for a minute or so and said it sounds like restless leg syndrome. Which at first seemed pretty bizarre since I am paralyzed. Those are the symptoms of restless leg syndrome he reiterated. They had begun back in 1999 when I was injured. Over the years they had lessened in frequency, but I still had at least a couple of times a week. If I didn’t take the medication right away it led to night terrors and panic attacks that would possess me for hours.
Going for a Walk
As odd as it seemed just his defining the condition led to a decrease in frequency. I had learned early on to take Xanax at the earliest of symptoms otherwise it was impossible to avoid the onset. The drug would usually put me to sleep for several hours and I’d a wake disoriented. The decrease in frequency was a blessing in itself and started me wondering if there might be another way to deal with it now.
For a long time, prior to my injury, I had used imagining as a tool in my life. I realize I have already written about it a couple times (Visualization Worth Looking Into and In My Mind I’m Going To Carolina), but this was another use for the powerful practice. In thinking about it, I decided if my legs want to go for a walk, then why not take them for a walk. Early one morning I woke up around 4:30 am. As the initial feelings started; my legs feeling like cement, tingling and then progressing to the overwhelming feeling to move them, I closed my eyes and visualized myself swinging my legs off the bed and onto the floor. Next it was step by mental step walking down the hall and outside. I could not believe how easy it was and how satisfying it was physically and more important mentally. Since that night I have gone jogging and even rode my bike. However, the greatest benefit is that I have not had a recurrence of the syndrome in a couple of months.
The mind is a powerful asset.
Posted in Ability, Attitude, Behavior, Creative Ideas, Disability, Education, Reality, Sensitivity, Simple Solution, Stuggling
Tagged adapting, control, life lesson, lifestyle, physically challenged, quadriplegia, using your mind
Those were the words I whispered to my nurse in the shower this morning. I was in the midst of a panic attack which had started shortly after I woke up. Early on after my injury I had them all the time, but now I only get one or two a month. At the earliest signs I have learned to take the medication prescribed for them. Waiting, hoping it will go away only allows it to get more developed. Once the symptoms start, it’s just a matter of time. I’ve never been diagnosed with PTSD, but I have most of the symptoms. They usually begin with my legs. There is an overpowering, all-consuming urge to move them and at times, like today, that’s combined with the fact that they feel like solid cement. There are no words to convey the overpowering attitude that takes over my mind. These attacks are characterized by facial distortions, crying and the feeling of being totally out of control. Sometimes I thrash and want to throw myself out of bed, but it is impossible because of the quadriplegia. It scares the hell out of me.
At times like this I have seriously considered smoking marijuana in an effort to totally change the way I feel. I have never smoked it before and am anxious about my mind would react to it. Craig Hospital, where I did my rehabilitation, is strongly opposed to marijuana use by those who have been paralyzed.
This morning it took almost 3 hours for my medication to take effect. The peaceful calm that I feel when it kicks in is a welcome relief to the terrible anxiety I have been feeling. Usually, after I’m up I get tired and fall asleep for a while. The struggle one goes through can only be understood by one who has been through it. It’s all consuming.
The question at this point becomes what can one do about it? The feeling, while it is going on, is like being possessed and rational thought is impossible. Well-meaning intentions of others are irrelevant. It’s been over 17 years now and I have no idea or advice for dealing with these. The only good thing about them is that they always end.
Posted in Attitude, Behavior, Community Inclusion, Disability, Education, Reality, Sensitivity, Stuggling
Tagged control, depression, life lesson, physically challenged, quadriplegia
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.
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.
Posted in Ability, Adaptive Technology, Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friendship, Observation, Reality, Recreation, Sensitivity, Stuggling, Wounded Warriors
Tagged adapting, control, Courage, life lesson, lifestyle, natural environment, physically challenged, Recreation, relationship, society, using your mind
This is the title of the new book written by Gloria Vanderbilt and her son Anderson Cooper. This morning they were on Live with Kelly and Michael. I thought the book title was an amazing metaphor for life. Years ago I wrote a blog called Talks Cheap – Test Time, which was about my struggle between positive attitude and depression / suicide. At the time, my blog was being carried by a website in Australia. They refused to publish it because not only did it talk about suicide, but it also mentioned some ways I thought about doing it. They felt it was a bad idea to share this with their readers. I argued with them that it is important for others to know that they are not alone in their struggles for a meaningful life and that life is full of challenges. They still refused, so we parted company.
I believe it is difficult for most able-bodied people to understand the roller coaster of emotions many individuals with disabilities go through on a daily basis. When I am with others, regardless how bad I feel, I am always able to project the image of one who is in control and well-adjusted to my situation. But, like the rainbow that comes and goes, when I am alone, or just Marge, at times the frustrations just seem to be overwhelming. It’s difficult to reach out to others because of their lack of understanding or I don’t want to project the image of one who is struggling to cope.
Many factors prove to be a continuing struggle which is often difficult to handle. Some of the frustrations are the same that were present prior to my injury, but the coping mechanisms I used are no longer available. When I was younger and getting “hyper” my kids would say “Dad, you need a physical fix”. I could go jogging, biking, kayaking or hop in my truck and drive up into the state forest land by myself. None of those are options anymore. The spontaneity is almost completely absent from my life. Plus, there are now new factors that compound the old ones. Weather is one, health and fitness for a couple of others. Even though I was sequestered most of the winter and it’s now April I’m still housebound. Part of my frustration right now is that it’s sunny and absolutely beautiful out, but the wind chill the last few days has been in the middle teens and this pattern is supposed to continue. Add to this the almost constant nagging health issues that happens to be present most of the time or that I’m unable to get my weight under control and you end up with a situation that seems almost overwhelming. At times like this, it’s almost impossible for me to motivate myself to do anything. The thing I want to do the most is to be out in the natural environment and that’s almost impossible. People have suggested going shopping or out to eat or to the movies, but none of these are what I really want to be doing or need to do to quiet the demons.
This blog is one attempt to relieve some of my frustrations. Knowing that there are others who will read this and understand what I am saying is comforting. To know there are some who will read it and say, “Oh, I’m not the only one struggling with these issues” also makes me feel better. After all, we must remember that the rainbow comes and goes!
Posted in Ability, Attitude, Behavior, Community Inclusion, Disability, Education, Friends, Friendship, Nature, Observation, Reality, Sensitivity, Stuggling
Tagged depression, natural environment, outdoors, physically challenged, quadriplegia, using your mind