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Are You Living Life or Surviving It?

When I came to 22 years ago and was thrown headfirst into a world that didn't include booze and drugs, I  decided I was going to put out as much energy into learning a new way of life as I had in living life loaded.

When I became disabled 11 years ago as the result of an incomplete spinal cord injury, I also became determined to live life rather than merely survive it.

It didn't matter that I didn't know how to accomplish those two things. It just mattered that I do them to stay alive and mostly sane.

In the years following those two decisions, I have come to understand that I didn't need to know how. The how of it all just sort of appeared as I kept to the path I had chosen for myself. Sometimes it seemed simple, sometimes it was so difficult that I could only keep my head above water and survive for months or years at a time but I never lost the passion and desire for learning a new way of life and living rather than merely surviving.

As much as I'd like to say that if you practice these 11 things you can learn how to live rather than survive too, I can't. What works for one may not work for another. These are just the things that worked and continue to work for me. But if one doesn't work, maybe another will or you'll be inspired to find out what does work to help you live life rather than survive it.

Be positive. Learn to recognize the negative stuff you think about: the self-doubts, the criticisms of others, the complaints, the why-mes, the excuses why you can't do something. Once you recognize negative stuff, change it right then. Stop yourself when you have these thoughts, and replace them with positive thoughts. Possible solutions, affirmations, happy thoughts, prayers, whatever- it doesn't really matter as long as it is positive. If you are not focused on the solution, you are living in the problem and that makes life miserable.

Don't suffer. I don't suffer much. I don't suffer fools or life. Life isn't all about fun and games.  We lose our jobs. A close relationship breaks apart. A loved one dies. We get physically injured or sick. A loved one becomes sick. Learn to feel the pain intensely, and really grieve. This is a part of life- really feel the pain, walk through it. And when you're done, move on, and find joy. Pain is inevitable, suffering is optional.

Focus on now. Instead of thinking about things you need to do, or things that have happened to you, or worrying or planning or regretting, think about what you are doing, right now. What is around you? What smells and sounds and sights and feelings are you experiencing? Learning this through meditation is great, but by bringing your focus back to the present as much as you can in everything helps you to live life on life's terms.

Learn new stuff. Constantly learn something new instead of stagnating. Not because you're a dolt but because learning encourages growth and fosters empowerment. Accepting yourself as you are, and learning to love who you are is a part of evolution but without learning and growth we stagnate and become stodgy and inflexible.

Find spirituality. For some, this means finding God or Jesus or Allah or Buddha. For others, this means being in tune with the spirits of our ancestors, or with nature. For still others, this just means an inner energy or knowledge. Whatever spirituality means for you, rediscover it, and its power.

Be of service. Don't just donate money or stuff you don't want anymore. Donate your time. Get out of your house and find those who live in worse conditions. Mentor someone. Be a child's advocate. Sponsor a recovering addict or alcoholic. Help at homeless soup kitchens. Foster a homeless pet. Volunteer at a hospital or hospice. Meet people, talk to them, work at understanding them. Live among them. Be one of them. Learn compassion and give of yourself. Touch humanity.

Find your passion. Take a chance and discover your calling. Make your living by doing the thing you love to do. First, think about what you really love to do. There may be many things. Find out how you can make a living doing it. It may not be easy, but you only live this life once.

Lose control. Come to understand that control is actually an illusion. We can control how we think and our behaviors to some extent but we control very little of what happens in life. It's generally a bad idea to try to control others; it rarely leads to anything other than stress and unhappiness for everyone concerned. Let others live, and live for yourself. 

Spend time with children. Kids really know how to live. They experience everything  right now, with everything they have. When they get hurt, they really cry. When they play, they really have fun. Learn from them, play with them, and work to be joyful like them.

Talk to old people. There are no one wiser, more experienced, more learned, than those who have lived through life. They can tell you amazing stories. Give you advice on making a marriage last or staying out of debt. Tell you about their regrets and failures, so you can learn from them and hopefully avoid the same mistakes. They are the wisdom of our society. Take advantage of their lives while they're still around.

Love. Maybe the most important. Is your heart a tough bundle of scar tissue? Learn to open it, have it ready to receive love, to give love unconditionally. If you have a problem with this, talk to someone about it. And practice makes perfect. Fall in love, if you aren't already. If you are in love, fall in love with your partner all over again. Abandon caution and open your heart to life. Or love family members, friends, anyone. It doesn't have to be romantic love. Work at love and being loved, one person at a time.

Understanding

I have come to understand I will never climb a pyramid in Egypt or visit Antarctica.

I may never be the woman I once dreamed I would become or even the kind, bohemian old lady who lives down the street.

I may never write the best selling book that will touch millions.

I will never be a saint.

But I will always be a good listener, a faithful friend, one who speaks straight and true, one whose word can be trusted, and one who never truly loses faith or abandons hope entirely.

I will always stand for the weak, speak for those who have no voice, work to protect the innocent.

And I will always be a person filled conflicting and sometimes contradictory characteristics, a person prone to deep solitudes, tinged with sadness, a person whose life is filled with moments of gorgeous brilliance and moments of impenetrable, inconsolable darkness.

I am more than I ever hoped to become but less than I have dreamed.

Life: A Few Years Later

Monday, March 19, 2001
To whom it may concern-

I am tired. I am tired of not being to clean my house. I am tired of not being able to wash a full load of dishes.I am tired of keeping a positive attitude. I am tired of trying not to be too much of a burden on my loved ones. I am tired of reminding myself there are others who have it much worse than me. I am tired of struggling to get out of bed in the morning. I am tired of having to use a motorized cart to do my grocery shopping. I am tired of pain. I am tired of having to sit down and rest every 10 minutes when we go to the mall. I am tired of being an albatross. I am tired of walking into a new store or restaurant and looking for the bathroom, "just in case". I am tired of being fat. I am tired of not being able to exercise enough to burn enough calories to not be fat anymore. I am tired of being awakened a half a dozen times at night because of leg and foot spasms, cramps and twitching that WILL NOT GO AWAY.

I am tired of looking ahead. I am tired of needing to use a handicapped placard. I am tired of pretending not to notice people watching me to see if I really am disabled. I am tired of the looks in old friends' eyes when they remember how I used to be and compare it to what they see before them now. I am tired of strangers asking me if I am really disabled. I am tired of fighting with an insurance company and with my attorney just get treatment I desperately need. I am tired of pain. I am tired of having to take medication.I am tired of losing my balance. I am tired of watching the weather channel to see what kind of pain the weather will bring each day. I am tired of "rating my pain".

I am tired of needles and doctors and tests and procedures and hospitals and physical therapy. I am tired of medical double talk. I am tired of feeling new pains. I am tired of numbness. I am tired of being tired. I am tired of asking for help. I am tired of beating myself up for not being the person I used to be. I am tired of having special needs. I am tired of not feeling whole. I am tired of not being "normal". I am tired of not being able to…(fill in the blank).

I am really tired and I just want my life back.

______________________________________

I wrote this and included it in my first assemblage (below) about my disabilities which was created in 2002, two years after my last spinal surgery. Since then I have learned I have something called and generally referred to as "accquired disabilities", meaning I wasn't born fucked up. These disabilities are also referred to as largely "hidden and invisible", meaning that I have no discerning or visible evidence or deformity that would suggest that I am anything but "healthy and normal", albeit a bit fat. This is especially true if I am minus a cane or my motorized scooter until you see me get up and walk. Because of this, I have had to learn how to be disabled. My cane became "The Legitimizer". The scooter, the difference between enjoying days out instead of getting through them. Life changes.

I have learned that an incomplete spinal cord injury is not enough to make you disabled in the eyes of the Social Security Administration. However becoming chronically dysthymic (chronically depressed) and mildly agoraphobic because of the incomplete spinal cord injury does.

I have learned more about pain that I ever thought existed. I hate pain. I always have. Before becoming disabled at 11 years sober, I drank and used drugs for 10 years in attempts to eradicate the emotional pain of an unhappy and troubled childhood and physical pain was something you took a pill for and it went away. Now, I know about chronic pain and nerve pain and that you can still feel pain in the numb places. I've learned pain also buzzes, vibrates, and burns. I know about pain that never goes away. Syndromes and terms for the complications of multiple spine surgeries have appeared and changed and remained the same for the last several years: Cauda Equine Syndrome; chronic pain and depression; suspected mild fibromyalgia,; blah, blah, blah...

I've learned some of your oldest friends completely disappear because they can't cope with the "new you" and others find their way back to discover you aren't the same you they once knew. Sometimes, you're lucky and they take the time to get to know you again. Sometimes, you're not.

I have learned that within the "disabled community" there is discrimination. For example, I have been told I am not really disabled because I am not in a wheelchair or paralyzed in someway. I have been told that because I appear to function fairly well most of the time and work hard not to let my disabilities interfere with my life, I must not hurt as bad or be as disabled as I tell people. These things have been said to me by other people with and without disabilities. It's as though because I can walk, control my pain fairly well through drug therapy and sheer endurance, and manage to keep a smile on face and a sense of humor most of the time, I can't be as disabled as I say.

I have also learned there are people who want to stay disabled not only in body but in mind. They remain stuck for the rest of their lives in chronic pain support groups and chasing the illusion of the magic pill that will make it so they can "live life again". I've relearned the vast difference in powerlessness and helplessness. If I had spent the last several years waiting around "to live again" instead of just living again regardless of circumstances or pride, I would still be waiting.

I've also learned I can't abide the attitudes and excuses that exist for people with disabilities which prevent and in some cases enable them from having any expectations of what they can do or accomplish. Anyone who knows me, knows that I have a special place in my heart for people who live with cerebral palsy and autism. "Normal" people mistakenly think this is because I feel sorry or them or because I think their disabilities are "worse" than mine. I do not feel sorry for them nor do I believe they have it worse than me. I've learned the severity of a disability is largely relative to the person who is living with it. Plainly put, I am inspired by the sheer determination and hope of the people I know who live with these challenges and who do not allow other people's lack of expectations limit what they expect of themselves.

I have learned that art and writing are my strongest, best and most effective in my arsenal of pain management. (The collage to your left for instance got me a new anti-dressant when I hauled it in to show it to my headshrinker..heh.) Often I can work on a collage or assemblage or essay for several hours before I realize it's time for a pain pill or a rest. Art was and continues to be a huge part of my healing process. It helps me feel more centered and serene and continues to sustain me through challenges and changes. It has allowed me to take the small steps that were necessary for me to reconnect with the world after my injury. The more I create; I become more familiar with my art and the creative process. If I had not had my visual art to retreat to for solace and expression in the months when I was unable to sit and write, I can't imagine I would have been able to make the strides in healing and confidence I now have in my work and in my new life.

I learned that love really does play an important part of healing well. Without Manthing 's quiet, steady support, I doubt my recovery from the spine surgeries would have gone well. It wasn't easy but he stood beside me and supported me, often without my realizing it. Without his love and caring I doubt my recovery from the spine surgeries and all their complications, would have gone well as well as they did. It wasn't easy but he stood beside me and supported me and loved me when I felt unlovable. And still does. Everyday.

Maybe I have come to understand I will never climb a pyramid in Egypt or visit Antarctica. I may never be the woman I once dreamed I would become or even the kind, bohemian grandmother who lives down the street doling out irreverant wisdom to inquiring minds. I may never write the best selling book that will help millions. I will never be a saint. But I will always be a good listener, a faithful friend, one who speaks straight and often true, one whose word can be trusted, one who loves wholly and one who never truly loses faith or abandons hope entirely. I will always stand for the weak, speak for those who have no voice, work to protect the innocent. And I will always be a person filled conflicting and sometimes contradictory characteristics, a person prone to deep solitudes, tinged with sadness, a person whose life is filled with moments of gorgeous brilliance, happy accidents and moments of impenetrable, inconsolable darkness. I am more than I ever hoped to be but less than I have dreamed.

And there's a good chance none of it would have happened, none of it would have been realized,  if I hadn't become disabled.

*All of theses images are assemblages and collages created by me about my disability.

Undamaged

My childhood was not a "normal" one in the classic sense of the word but as I get older I often wonder if anyone's childhood was normal. Even what passes as normal really isn't. I think normal, like art is a subjective matter. I believe others had easier childhoods than I by virtue of the fact their parents were simply more balanced and sane than the ones I had.

Undamaged is born from the realization I had not so long ago that in my forties, I am finally beginning to feeling undamaged again. It came with a collage I did entitled Undamaged that included an altered photo of me at four years old.       

 

I have found myself over the last several months drawn toward the pictures of the child I was before the damage began. Before my father began his betrayal. Before I began reminding my mother of the trouble I was. Before I reminded her of my father. Before I formed my own opinions that differed from her own. Before I began seeking and creating ways of removing myself from her presence and household once my father left. The pictures of the child I was and the child I grew to be become markedly different as I grow older. It's in the eyes somewhere. Some spark or fire grew steadily dimmer until you have to look hard to see a light anywhere in those small eyes. When I look at the Undamaged photo, taken when I was still indeed undamaged, I smile because I am reminded that the flame was only hidden while it needed protection.