%%USERNAME%%    %%ACCWORDS%% %%ONOFF%% |
 |
thoughts that escape the confines of my head |
| this journal is where I vent...to relieve the pressure of taking care of so many people. I'm a mother, grandmother and private duty nurse who used to work in a hospital. The thoughts here cover my life for over 40 years. I write at home, at work, on the beach...anywhere with access to a pencil...laptop...desktop |
| I don't even know when I was here last...I have been posting here lately...not on my blog but on this site...I've been posting poems about love and the anguish of love...love and anguish are both very inspiring...I've pulled out and dusted off completed short stories and they will begin making an appearance soon...I lost another patient...he was 24 and I'd known him since he was 10...so I said that was it for me...no more nursing...that decision lasted a nanosecond...so I said okay...I'll continue being a nurse but no more young people...I'm now an overnight nurse for a three year old... |
| I'm sitting here at work...thank God for laptops...I want to write but I realize I need more than just time...I need a place away from home and work...if I still lived alone...I tell myself I'd be writing all the time...that isn't exactly true...I did live alone and I spent a lot of time doing everything except writing...I have this psychological condition called 'don't write when you can' and I need to find a cure...I should be doing nursing stuff now...not writing...that's why I'm updating my blog...then there is still the problem with learning to use WritingML in my entries...I need help with that also...practice... practice...then practice some more...somehow...I just have to start pulling it together... |
| Can You Really Walk a Mile in The Shoes of a Quadriplegic "_* _ _ _ _ _ _ _ _ ** _* _ _ * * ***_ * *_* _*_* _ _ _ _ *_ _* _ _* * ***." "Nothing ever changes." "Twelve years is too long. I'm tired of nurses. I'm tired of my family. I'm tired of wishing I were dead." I couldn't escape my client's words, or the image of him lying there using Morse Code to tap out his emotions. What could I say. How could I respond. Empathy: Webster says this is the ability to share in another's emotions, thoughts; or feelings. I don't believe that ability exists when it comes to a quadriplegic or immobilized person. How can anyone who can move, talk and do what they want without assistance, empathize with someone immobilized. It doesn't matter how good a doctor you are, how long you've been a nurse, how much you love this family member. You can't put yourself in the place of a quadriplegic and say you understand how he feels. This article will examine some real issues that separate the non-ambulatory person from the mobile one. I will demonstrate how this goes beyond the physical limitations, but touches on the mental challenges as well. Any competent adult has the ability to set their own limits. Why change the rules if someone becomes a quadriplegic. Now let me show you, not how to put yourself in a quadriplegic's shoes, but to understand why you can't. This article was inspired by one very special friend, but I dedicate these arguments to all who have faced, or will face the issues presented here. I've been a nurse for over fourteen years. I worked two years in a hospital before going into private duty. Having worked with several quadriplegic adults and other non-ambulatory patients, I've known of their mental anguish and their dreams and aspirations. I've been with my current patient for over twelve years and for more than ten of those years I've been his sounding board. His paralysis from the shoulders down is the result of a diving accident 16 years ago. Further complications and encephalitis destroyed his ability to speak. He uses a computer and Morse Code to communicate. He types everything with his chin. " ** *_ _ *_ _* _ _ _ _ _ *_ _ *_ _ * . " " I want to date." I am his voice. He conveys his needs to me and with his permission I present these needs to the family member of his choice. Today the message is presented to one of his brothers. My client waits upstairs in his bedroom. "That's the saddest thing I've ever heard." This is not the comment I want to take back to my client. I want to say: "Is this it. Is this all you have to offer." What should he say. What can any of us say to him. He'd have to have a nurse with him on a date. Depend on someone to drive him around like a chaperoned child. Another day. He taps. The dots and dashes become words. "I need my own place." He does. He's in his thirties. At twenty-two he'd mapped out the rest of his life. Photography in New York City was his major goal. He was on his way to independence. "** *_ _ _ _ _ ***_ * ** _* _ _ _ _ _ **** * _ _* *_ _ * *_* ." "I dove into the water." "I was fully clothed. I hit my head and saw a flash of light. I knew it was the end of my privacy forever." It was two days after his 22nd. birthday. He was horsing around. No alcohol. No drugs. He was having fun. He dove off a pier into shallow water. This wasn't just a loss of privacy, it was the loss of his independence and the spirit of his youth. His life lay at the bottom of a river. He taps. There's resentment in the message. "Who's my babysitter tonight." I know what this means. He's asking which of his siblings will be there to assist the nurse putting him to bed. He taps again. "No more going to bed early because my babysitter's tired." It sounds like a statement from a defiant child.. The problem is: the client has a remote controlled lift and the nurse has to learn to operate it. This gets the client from wheelchair to bed. In my client's case, a sibling is there with each new nurse the first few nights until she masters the technique. The siblings have jobs. They need their sleep. Once a new nurse learns to put him to bed alone, the client can stay up as late as he wants. This is a small consolation for someone who gets up most days at someone else's convenience. "**_ * _ _ _ _ **_ _!" "Get out!" He wants to kick everyone out of his bedroom. Out of the living room. Out of his life. His requests or demands are in Morse Code, tapped out on a computer because he's mute. But just because he has no voice shouldn't mean his words should fall on deaf ears. Let him know you're listening. Get out of his room. He knows he can't keep you out. He understands he has to be cared for, but give him some time to be completely alone. Give him at least that much independence. More taps. He wants you to hold the Insulin. Hold his liquid supplement. In my client's case, he's a diabetic. He wants you to feel his demands, even if some of them can't be met. He tells you he had a nightmare. You ask what it was about. " I dreamt I was walking...swimming...running." You didn't expect this answer. Your idea of a nightmare has a different concept. This is a reality check. Listen to it. It demonstrates what an immobile person has to deal with. " The water was my best friend...then it betrayed me." The betrayals continue. He wants a week away from his family. He'd prefer more time...it doesn't matter. He doesn't even get the week. Compromises are offered. Stay home but in a different part of the house. Family would wait for invitations to visit. There isn't enough distance. They continue to barge in on his illusive freedom. Photography; movies. To some it may sound like entertainment. To this disabled adult it's an exercise in control. What movies to see; the control of directing photo shoots. Some other adult tells you you'll see their movie tonight. Someone else tells you a different night is a better night for a photo shoot because certain programs come on tv that you'd rather not see anyway. If you're mobile you can walk away. Go to the movies alone. An adult quadriplegic should be allowed to do what he feels like doing...not what others say he should feel like doing. If we're tired. and have a day off, we may decide to stay in bed all day and read; watch t.v.; listen to music. What the hell...we're in control. What would you do if that choice were taken away from you. Wouldn't you be angry. Indignant. There are always good intentions. Someone says it's not good for your lungs. You think...one day. Can't I stay in bed one day. Now imagine someone getting you out of bed against your will. You'd fight it right: if you could move. If a quadriplegic uses a computer to manipulate his environment then all he needs is help with his switch. You take away his switch; you take away his control. A family member would probably never do this to him: but many don't realize that taking away choices is equivalent to taking away a switch that enables the quadriplegic to maintain some measure of control. Now let's try to take a little walk in those shoes in a very familiar way. You have a very private itch during a very important meeting. You can't leave. You can't scratch. Concentrate on that itch. Feel it intensify. Feel it spread to other areas. Feel the need to scratch become the strongest need in your life. Now imagine if you couldn't scratch it. Someone else has to scratch it for you. Now imagine they won't. Seeing the big picture is what a lot of us fail to do when looking at a disabled family member, friend, client. Some of us think it could have been worse. He's lucky to be alive. Lucky to have all his wits about him. Does he feel lucky. Is lucky quadriplegic an oxymoron. We should never say to a quadriplegic; what's done is done; deal with it; get used to it. How can any adult get used to their life being in the hands of someone else. Why should any adult with a competent mind have to get used to it. We see the life of a quadriplegic in frames of taking care of him. He's an adult and sees his life in terms of the amount of control that he's given. What family members and care givers must realize is that the only thing a mentally sound adult quadriplegic can't do is walk. He can and should be involved in all decisions concerning his care. His social life and extracurricular activities should be completely his choice. No one should ever tell him what to think, feel, watch or listen to. He cannot walk away from decisions we make for him, so let him make those decisions himself. How many of us have faced off with someone who says they're doing something in our best interest. If we don't agree: we challenge it. We know better than anyone what we feels is best for us. Right or wrong, it's what we feel. We cannot put ourselves in the shoes of a quadriplegic. That's the big picture. The best we can do is step back, open our eyes wide; and take a closer look. |
| ...I haven't written about Michael in such a long time...he was a patient...he was a friend....Michael died...he couldn't use his computer...he'd gotten confused...then he went into the hospital...he was septic...his blood was infected...I knew something was wrong...very wrong....he couldn't tell us....but I know he knew something was wrong...but how long was he sick...he faded away in a matter of days...one day he was making CDs like always...then he couldn't even type out anything...his chin clicked his switch and there was no sense to what he was trying to tell us...his family didn't understand...we nurses didn't understand...the last shift I worked...Michael was incoherent most of the time...I talked to him...I think I knew he was dying...he'd so often said he was tired...I told him...Michael, I don't know if you can hear me, but I know something is wrong...I said, if you're tired of holding on, if you're only holding on for your family, then it's okay to let go, I said, if you are only holding on for others, not for yourself, then let go, if you're tired Michael, just let go...that was at the end of my shift...just before 3p.m....it was Tuesday...November 9th...Michael was taken to the hospital during the 3-11 shift...they called me at home and told me this...on Thursday...November the 11th...I received the call that Michael was gone...it was Veteran's Day a few years ago....that day a man on t.v. showed a collection of Western New York military people who'd been killed in Viet Nam...he'd worked on that for years...as I cried over Michael's death...I watched pictures of dead soldiers flash across the screen...I thought to myself, "it would be tripped out if they show a picture of my older brother", 3 pictures later...my brother's picture flashed across the screen...I'll always remember that day....seeing my brother's picture....who died in 1966...and Michael dying decades later...on Veteran's Day... |
| ...If I could understand...just figure out the WritingML...I'd use them...I guess that would make the site more inviting...I keep trying to figure it out...but my mind is on the words whirling in my head...I've been here for years and have yet to use a WritingML...I try and try but can't wrap my mind around that concept...okay...I'll just write and write since it's what I know best...not PC stuff...just mind to paper... |
| why do I keep getting lost on my way to where I'm supposed to be....is anyone really watching where I'm going...am I...I didn't make any resolutions...they don't do me any good...I try to make a plan...I do 'to do' lists in my head and I can't even write those down...but my love of writing never falters...and I don't know how to put the WritingML in my posts to get noticed...so who am I here... |
| ...ok...there is no real venting going on...I just need to write more often...I have hard copies of a lot of writing...I have short short stories that have no home...I will post them here...I feel a need to share more...to not be afraid to disappoint...I need outside criticism...not just my inner voice which is pretty cruel at times and may be more of a hindrance than anything...and I really need to learn more about using this site... |
| ...Congestion clogs up highways...chests...heads... so that's where my heads has been...stuck in the traffic jam of every day life...writing should be the thought that starts and ends my day...I once read that "life is what happens while you're making other plans" possibly true on so many levels...not writing is not my chosen option...but life does get in the way...right now I finally have a place to write...but being there is hard...and this place is in my home...I pass it every day on my way out and every night on my way to bed...so it may take another 78 days 22 hours 37 minutes before I blog again...but I hope not...someday soon...sooner I hope... |
| ...it's another year and so much time was wasted in 2007...I didn't write the way I should have...I missed every deadline there was...I can't start over in a new year...I just have to go on from here... |
| ...gone too long...so many working hours...but I have been taking off too...Cleveland...Richmond...Vegas...my patient got a pool...a deck...a lift...summer has been busy...but I never want my writing to take second place to anything... |
View Portfolio
Visit Notebook
Send Gift Points
Awards
Badges
Send Email
Community Newsfeed
General Discussion
Sponsored Items
Book of Trinkets
Static Items
Books
Groups
Interactive Stories
Audio
Campfire Creatives
Community Notes
Crossword Puzzles
Documents
Folders
Images
In & Outs
Madlibs
Photo Albums
Polls
Product Reviews
Quizzes
Survey Forms
Web Pages
Word Searches
