Tag Archives: depression

Alternative Facts

Alternative Facts

Alternative Facts

“I Don’t Want To Be Me Today”

Struggling

Struggling

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.

Through No Fault of Our Own

Within recent days I’ve received emails from several friends all struggling with the challenges presented to them by their disabilities. Of them, I am the oldest and I’m pretty sure I have been dealing with my disability the longest. I wish I could do something or make a potion that would make these challenges disappear. But, I know, as they do, that dealing with these crises is not that simple.

Andy and his grandson

Andy and his grandson

Early on, after my injury, it was so important to me for people to understand that my injury was the result of an act of nature rather than a situation I had brought on myself by poor behavioral choices (i.e. Drunk driving). I didn’t want people thinking he got what he deserved. I was always grateful that my quadriplegia was the result of my pursuing an activity that I loved. Even though I was standing in waist deep water when caught by the wave I had actually been body surfing for several hours. A couple of the emails were from people who had been injured while mountain biking. Another was result of the onset of cancer and complications after a stem cell transplant. All causes were out of the individuals’ control. Why them, why me, these are questions we may never find the answers to. Personally, I feel all my pre-accident life was a preparation for my life now. It is comforting to me to think Handihelp, the blog and my public speaking may be helping others, which is all I wanted to do when I became a teacher.

What can be done, what words can be said to ease the physical and mental struggles that those of us in the disabled community deal with almost daily. It’s been my observation over the years that the best “solution” lies in the individual’s mental makeup. The single most important factor is an attitude which can be manipulated. If you look at my early blogs, most of them deal with that topic. When speaking to groups there are a number of observations that I have made over the past 17 years that I believe will be helpful in putting life and life challenges in perspective.

* Life is not fair and owes us nothing.
* Anger, over time, is detrimental to moving on.
* Life is precious; each day is a gift and one should take some personal time each day
to enjoy it.
* Life can be good again, enjoyable again, but it will never be the same. The
sooner a person realizes and accepts that, the better off they will be.
* The most powerful “tool” we have in adjusting to our situation is our mind/attitude.
* It may be difficult, but to ask for help is not a sign of weakness, and
there are many people who wish to help, but you may have to take the initial step.
* Love is an amazing thing, the more one gives, the more one has to give.
* A pet can play a major role in the life of an individual with a disability.
* Love makes everything easier.
* You can’t do it alone. Friends make our lifestyle much more bearable.
* There is a solution to most of the challenges one faces. It’s just a matter of how
much thought, time and effort you are willing to commit to finding it.
* Frustration and struggle will always be part of this new lifestyle.
* Nothing comes without sacrifice.
* Advice is easy to give, but much more difficult to take and even harder to act on.
* Laughter is essential.
* We are all stronger and more capable than we think.
* Life is full of risk.

What a comfort she was

What a comfort she was

Will this help others? I hope so, but it has helped me.

The Rainbow Comes and Goes

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.

The Rainbow

The Rainbow

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!

Change – Not Always For the Better

“The times they are a changin’” so sings Bob Dylan. Normally, most people believe change is good, but in my case I’m not so sure. Earlier this year, I not only turned 72, celebrated our 50th wedding anniversary, but also observed the 16th anniversary of the accident that left me with quadriplegia. These and other factors, I believe, are causing a very difficult change in me. I have alluded to it in a couple of my more recent blogs. I’m starting to feel limited as opposed to challenged.

Letting in rain take me away

Letting the rain take me away

Today it’s raining, so I donned my poncho and sat outside as I have a number of times. In the past, the sound of the raindrops on the nylon transported me back to a rainy day in the Five Ponds Wilderness area when the weather forced me to hold up in my tent. Usually, I could actually feel the warmth and security that snuggling down in my sleeping bag produced. Today I could only think about it, not feel it.
A rainy day on Grass Pond in 1989

A rainy day on Grass Pond in 1989


Lately, I have become more aware of the limitations quadriplegia places on my life. In an effort to help I read over some of the articles and blogs I’ve written on attitude and not giving in and wonder, “What the hell is happening?” I’ve had times like this before, but always seemed to bounce out of it. Maybe that will happen again, but I don’t get that feeling. It seems I’m relegated to a life of dependency. Dependent on someone for a ride to go anywhere or dependent on a group of friends that’s necessary for me to participate in an activity. I don’t have much socialization with other individuals who are disabled. I have no ideas what others experience so I don’t know if this is normal or not. I become depressed and removed very easily when like this. It seems harder now to rise above these challenges than it did just a few years ago.

When I taught mental health in high school, I was amazed how students thought their problems were unique and had no idea the person sitting next to them were struggling with similar issues. Or how relieved they were when they realized the problems weren’t unique just to them. This blog is written expressly for that reason.

Several days have passed since I wrote the above. I’ve come to realize I have to face these changes head on. My doctor has, at my request, adjusted my meds and is putting me in touch with a counselor. Some of this is probably normal for anyone who is aging and has a major disability. Also, redefining my expectations, activities and goals to reflect my age and physical condition is another necessity. I must remember I have control of this situation. I’m starting to feel better already!

Reality

Reality

Sometimes It’s Really Tough

You’ve probably heard about the snowfall totals south of Buffalo, New York this week. My understanding is in some areas, it approaches 7 feet. The same lake effect snow event produced large amounts of snow, where I live, east of Lake Ontario. The big difference is the fact that Lake Ontario’s eastern end is quite a bit wider than the end of Lake Erie. As a result of that, the wind direction here can oscillate and spread the snow over a much larger area reducing the totals in any one place. Usually when there is a lake effect storm off Lake Ontario the major accumulation is south of us. However, the snow bands were moving over our area most every day. Because of the force of the wind blowing, drifting is quite a problem. New York’s governor has declared Jefferson County as well as a number of other counties in a state of emergency.
Lake Effect Snow Total Nov 2014

One of the hardest adjustments I’ve had to make is the confinement the winter causes for me. Prior to my accident I was very active in the winter months jogging, downhill skiing, cross country skiing and snowshoeing were all winter activities that I loved participating in. The quadriplegia, resulting from my accident almost 16 years ago, had a tremendous impact on my lifestyle. I have struggled over the years to regain control of my quality of life. It hasn’t been easy, but I think I’ve done a pretty good job persevering.
Without a doubt the activity I still love the most is hunting. Harvesting game was never the major reason I hunted. The time I spend outdoors sitting in a blind is what gives me a chance to renew my inner self. When the weather cooperates, I usually spend 4 to 5 hours a day sitting outside. It’s an unusual day when nature doesn’t share some of her special happenings with me. Another one of the beneficial effects on me is the impact on my mind of the solitude around me. That’s hard to contrive in my regular daily life.

I know my wife is right when she tells me I need to get out more, but out where? Going to the movies, out to dinner or any of the number of similar activities just doesn’t do it for me. It never did and it never will. It can be a sore subject at times between my wife and me.

I couldn’t wait for the blizzard to stop so I could return to hunting since there are several weeks left in New York State deer season. But conditions are preventing this from happening. My four-wheel-drive wheelchair will not be able to navigate through the drifts and get me where I want to go even though it’s not very far away.

It’s a constant struggle to keep this frustrating situation from developing into depression. As I read over this blog, I’m sure it seems petty to most able-bodied individuals. Only another individual who is paralyzed knows the struggle we go through much of the time to maintain a positive attitude. As I said in the title sometimes it’s pretty tough. Weather Bureau just issued another Lake Effect Advisory

A different Year

I Want You To Know Daniel

Daniel lived next door to me. He was 16 years old and a junior at the local high school. He was a teenager filled with ideas, dreams, aspirations and adolescent insecurities. Daniel was also shy, sensitive and caring. He loved the out – of- doors and nature. To his neighbors, he was a very special young man.

David, the neighbor on the other side of our house, had cancer which was slowly spreading. In 1999 I was on vacation in the Caribbean when I was struck by a wave which left me a quadriplegic. Daniel was only a year old when that happened. As I struggled over the years to regain my quality of life, Daniel and I became closer and closer. He began to play an important role in David’s and my lives. As Daniel grew stronger, he began doing more and more for us. The doctors were unable to cure David, and he got weaker and weaker. Daniel did whatever chores he could and always found time to just sit and visit with him. David passed away in November of last year, but Daniel continued to go over to the farm and help out David’s wife, Gail.

For a person with quadriplegia not only do your legs not function, but your arms and hands don’t work normally either. Daniel became my hands as well as my friend. As he grew older he would do more and more. Early on he put up birdhouses and stayed the night with me when my wife was away. We called it adult sitting. He would come with me when I took my 4 wheel drive wheelchair into the woods and fields around the neighborhood. In an effort for me to return to hunting, Daniel built blinds out of snow fence to hide my wheelchair from the deer and turkeys. We both enjoyed these special times we had together. For the last several weeks he had been helping repair my 4×4 wheelchair. Just recently, we talked about what we were going to do when the weather broke, and I could get outside. I took a picture, intended for my website, showing him as he was drilling holes in the new seat pan he had just put on the chair. He looked so proud and happy.

The last picture taken of DanielLife is a struggle for me, but I never knew the depths of the struggle Daniel was going through. Over the last few years we had talked about the taunting, teasing and bullying he was experiencing at school. As a former special education teacher, I shared strategies I had used with my students. This year things seemed to be improving. Daniel was on the honor roll and he seemed more confident and self-assured. What we didn’t realize was after years of attacks, he was being driven into a desperate act to escape. Monday night it all came to a head and he lost HIS struggle.

Who has done this? A few, hiding behind the anonymity of social media, can text and Tweet whatever they wish. Can they not look and see what can happen? Will they not realize the full extent their actions, or are they already looking for another vulnerable target? I have learned that there are enough challenges and pain in life already. Why make it any harder for anyone else?

As I look out my window I can see Daniel’s tracks in the snow from when he shoveled, brought in wood or filled our bird feeders. With the coming of spring, these signs will melt away. But his memory will remain locked in all our hearts, minus the piece of our hearts he took with him.

…Oh and I can see Daniel waving goodbye
God it looks like Daniel, must be the clouds in my eyes…
Lord I miss Daniel, oh I miss him so much.

Daniel by Elton John