I Want To Know What Love Is

I What To Know What Love Is                                                                                      

I want you to show me…   Foreigner

Since Valentine’s Day is Monday I will give you an example of what love is because I can’t show you. My wife Marge and I have been married 45 years.  At my son’s wedding I was asked to give a brief talk. The following quote was part of what I said: “The last 29 years have been the best of my life. Marge and I have shared laughter and tears, good times and bad, joys and sorrows; but more then that, we have shared our dreams, our inner most thoughts, our strengths, our frailties, and we have shared our love. Marge has always been there when I have needed support.  Things that happen to me when we are apart are not complete until I share them with her. Only with Marge can I truly be myself and completely relax.”

Less then 5 years later I had my accident. The accident did not just happen to me, it happened to my family but since we had an “empty nest” it was really Marge who had to shoulder the majority of the responsibilities. The readjustment was greater than we ever anticipated. It took a long time. I like to tell people that our dog realized in a few weeks what it took me years to figure out and that was that Marge was now the alpha member of the family. Many couples, unfortunately, do not survive the consequences of a readjustment of this magnitude. We were very fortunate to head into it with a strong relationship built up over 35 years. More often than not people tend to focus on me and the challenges that I have had to deal with. I think many give little thought to the tremendous responsibilities placed on the spouse. My wife epitomizes the wedding vows and lives up to Tammy Wynette’s call to “Stand By Your Man”. Marge, not only cooks and manages our home, she also oversees all my care issues, chauffeurs me everywhere I have to go and puts me to bed every night. I owe my good health and lack of complications to Marge’s supervising my care.

Birds at a feeding station station

The hardest part of my adjustment is having to watch Marge deal with the physical tasks that have been thrust on her. Yesterday and today February 10 and 11 we received several feet of snow (check the roof of the dog house in the picture). We have a wonderful neighbor who keeps our driveway plowed and open. But there is still a lot of physical work she must do like shoveling the front walk and bringing in firewood. There are also activities she chooses to do like feeding the birds. After my accident we decided that the birds would be a wonderful source of entertainment for both of us. I have built some bird feeders and we have feeding stations all around our house. The snow from the storm is waist deep so movement off paths is extremely difficult. Both yesterday and today I had to watch Marge shovel her way across the lawn, pulling a sled full of birdfeed behind her. She had to shovel in several different places to reach all the feeders. She returned to the house tired from her struggles. Why does she do it? After all it is not necessary; the birds would survive anyway. Marge struggles to feed the birds because she loves them and because she loves me. So Foreigner that’s only one small example of what love is!

Cardinal & Sparrow feeding during the storm

 P.S. If you know Marge please don’t mention this blog to her because she doesn’t want me to write about her.

Struggling

I have not written in a while because I have been struggling for several months with a significant health issue which has resulted in a high level discomfort during most of my waking hours. After the initial adjustment to my disability, I felt as though I was successfully handling most issues most of the time and adapting to the circumstances I found myself in. Currently, the ability to place things in perspective and reassert control over my situation has escaped me. I have become depressed, frustrated and withdrawn compounded by my seeming inability to gain control over my emotional state. I know the power to deal with this challenge is within me, but I have been unable to tap into it. We are still at the point where we are trying to identify the possible cause or causes of what is taking place. Early next week there should be a clearer picture of what is going on and what options are available to rectify the matter.

 This situation is an almost constant reminder of what my disability means. None of the possible solutions are very desirable. I find myself slipping into a spiral of self-pity which does nothing to help the situation. The almost constant physical discomfort makes marshaling my mental strength to fight this challenge extremely difficult. The fact that I have been extremely healthy over the last 11 years does not help matters either. Naively, I had done little to prepare for additional health problems. I feel compelled to write this blog so people understand the struggles most of us with major disabilities experience on a constant basis. I have likened the situation to a juggler keeping a number of balls in the air, and as more balls get added. It becomes more and more difficult to maintain the skill.

Turkeys

 On October 1st turkey hunting season begins, and I am hoping that this endeavor will occupy my thoughts and mind and will help provide me with an avenue for gaining better control. The turkeys and deer I hunt do not care that I am in a wheelchair and it is irrelevant to the game that I use my mouth to fire my gun. All they know is that I am another predator and that is all I want. Interestingly, this morning 13 turkeys showed up in my backyard to feed at the birdfeeders. I will take that as a good omen for developing a more positive outlook. By the way I never hunt these birds.

Wishes and Daydreams

Both of my nurses have children graduating from high school this year. My primary nurse has been with me for almost 11 years now. Her children are almost like grandchildren to my wife and me. It is her son Devin who’s graduating. When he was young we used to play together. Over the years he has done work around our house, has stayed with me overnight when my wife was away (we call it Adult Sitting) and I’ve watched him grow up. He is a fine young man, as well as a good soccer player and I’ve seen him play a number of times. Devin will be going into the United States Navy, after graduation, and will train to be corpsman.

I’m envious! He’s young and I’m old. He’s got his life ahead of him; most of mine is behind me. He’s fit and I am not. I want to be him, young, healthy, virile with so much to look forward to. Just the other night I was thinking it is too bad life doesn’t begin at old age and go backward to childhood. However, wishing and daydreaming isn’t going to change my situation. But what it does do is help me look at my life and put things in perspective. People come and go every day and little changes in the grand scheme of things. All this is wishful thinking, I guess, but the reality is only the earth goes on. It reminds me of part of the Serenity Poem which was stuck on a bulletin board in the kitchen at my best friend’s house.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference. *                                                                               

*Reinhold Niebuhr

So, all things considered, what is the lesson to be learned? Deal in reality, enjoy your life as it is, change what you can and take time each day to smell the roses. We are not here very long so we should make the best of our situation.

Senior Year 2010

Senior Year 1961

Christopher Reeve, Inspiration and Success

Did you know, CNN is doing a story on Parenting with Disabilities. I’m sure it’s very difficult for many of us to feel comfortable opening up and sharing ou stories. Although I found the switch to give me the passion to come forth and become some what of an exhibitionist , it’s not always easy. Well I also noticed while watching television , shows aren’t always delivering content involving issues, actors or athletes with disabilities. I wonder to myself sometimes since my disability I watch more television. I wonder if any of you experienced this as well and if so I asked myself, if television is mostly viewed by individuals with disabilities. If this theory is true then why aren’t we seeing ourselves or representations of our real aspiration on film and television.

Ratings are made up of human viewers, if no one is watching , industry is dropping. My comrade Larry the Rolling Filmmaker is a big advocate on putting more actors with disabilities working in Hollywood, I’m sure seeing this would give many more inspiration as well. The few friends I made that are aspiring to break down barriers as well as fulfill their dreams are continuing to pursue their passions. I’m not a famous actor, I didn’t grow up in Hollywood and I don’t have famous friends but I still see those who are struggling within their own careers. I didn’t truly become more of a name among my peers on my own. It took everyone I met on Care Cure Community to help me get to this point where I’m taking a stand on this movement for supporting each other.

It’s been my statement that Christopher Reeve is my inspiration, I learned more about spinal cord injury because of him. Not just learning about the research, politics and technology but collaborating and helping others. Although it’s very important we support each other for the things we need to live we also need to enjoy life. We are still human despite our disability but sometimes we feel detached from the world considered normal. I’m assuming we possibly make up a very large percentage of viewers when it comes to television ratings. I’m sure someone would enjoy researching this idea but I know the many friends I chat with online many are stuck at home. That’s no luxury like some may think. I had a few people say to me I live like a King having people cater to my needs. If being stuck in bed and can’t get up and having to wait for someone to wake up to help me eat is living like a King, someone please dethrone me.

Back to the topic about what we see on TV. I would like to finally see a network about disability, they can call it TDC The Disability Channel, not an unique name but something to get us relative television. I can be conceited saying this but that’s just another theory, I bet if Christopher was here we had a television show maybe a network by now. Christopher seemed to have the super powers to be forever Superman and he broke more barriers then most actors with disabilities for disability, not only for himself. I feel beyond whatever reason others may feel they can’t get ahead , many times when you use your talents or power for others you succeed a lot more. That was Christopher, no matter what ever anyone thinks, he didn’t use his power for self gratification he used his power to help all of us.

So finally what I’m trying to say, is we need to try to support bringing disability in the media. If there’s no ratings there’s no sponsors. CNN called me to be part in a promotion about Parents with Disabilities. The show has nothing to do with me but I will support, watch, blog, bulletin or send out a newsletter. No matter weather you are a disabled parent or not, post , watch, add a video of your support. The key to balancing all these TV shows we say are crap yet get the most air time is going to need the same attention. So please pass on this link and encourage others to if not get involved, read the synopsis.

http://www.facebook.com/l/9ed79;www.ireport.com/ir-topic-stories.jspa?topicId=432759&hpt=Sbin

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