I know what it's like for me because I live it every day, but I wonder what it's like for other quadriplegics in my situation and if they do the same things I do. I wonder if they do range of motion and how often. I wonder how many times a day they change position. I wonder how long they can be up in their wheelchair. I wonder if they have occupational, physical, or massage therapy. I wonder what type of technologies they have to be independent. I wonder how they get around to different appointments and stores. I wonder if they get adequate staffing to assist them. I wonder if they are accepting of their situation. I wonder what they say to themselves in times of struggle. I wonder how much they are like me.
Jenni
Sunday, February 27, 2011
Wednesday, February 23, 2011
Determination
In 1883, a creative engineer named John Roebling was inspired by an idea to build a spectacular bridge connecting New York with the Long Island. However bridge building experts throughout the world thought that this was an impossible feat and told Roebling to forget the idea. It just could not be done. It was not practical. It had never been done before.
Roebling could not ignore the vision he had in his mind of this bridge. He thought about it all the time and he knew deep in his heart that it could be done. He just had to share the dream with someone else. After much discussion and persuasion he managed to convince his son Washington, an up and coming engineer, that the bridge in fact could be built.
Working together for the first time, the father and son developed concepts of how it could be accomplished and how the obstacles could be overcome. With great excitement and inspiration, and the headiness of a wild challenge before them, they hired their crew and began to build their dream bridge.
The project started well, but when it was only a few months underway a tragic accident on the site took the life of John Roebling. Washington was injured and left with a certain amount of brain damage, which resulted in him not being able to walk or talk or even move.
"We told them so."
"Crazy men and their crazy dreams."
"It`s foolish to chase wild visions."
Everyone had a negative comment to make and felt that the project should be scrapped since the Roeblings were the only ones who knew how the bridge could be built. In spite of his handicap Washington was never discouraged and still had a burning desire to complete the bridge and his mind was still as sharp as ever.
He tried to inspire and pass on his enthusiasm to some of his friends, but they were too daunted by the task. As he lay on his bed in his hospital room, with the sunlight streaming through the windows, a gentle breeze blew the flimsy white curtains apart and he was able to see the sky and the tops of the trees outside for just a moment.
It seemed that there was a message for him not to give up. Suddenly an idea hit him. All he could do was move one finger and he decided to make the best use of it. By moving this, he slowly developed a code of communication with his wife.
He touched his wife's arm with that finger, indicating to her that he wanted her to call the engineers again. Then he used the same method of tapping her arm to tell the engineers what to do. It seemed foolish but the project was under way again.
For 13 years Washington tapped out his instructions with his finger on his wife's arm, until the bridge was finally completed. Today the spectacular Brooklyn Bridge stands in all its glory as a tribute to the triumph of one man's indomitable spirit and his determination not to be defeated by circumstances. It is also a tribute to the engineers and their team work, and to their faith in a man who was considered mad by half the world. It stands too as a tangible monument to the love and devotion of his wife who for 13 long years patiently decoded the messages of her husband and told the engineers what to do.
Perhaps this is one of the best examples of a never-say-die attitude that overcomes a terrible physical handicap and achieves an impossible goal.
Often when we face obstacles in our day-to-day life, our hurdles seem very small in comparison to what many others have to face. The Brooklyn Bridge shows us that dreams that seem impossible can be realised with determination and persistence, no matter what the odds are.
Even the most distant dream can be realized with determination and persistence.
Roebling could not ignore the vision he had in his mind of this bridge. He thought about it all the time and he knew deep in his heart that it could be done. He just had to share the dream with someone else. After much discussion and persuasion he managed to convince his son Washington, an up and coming engineer, that the bridge in fact could be built.
Working together for the first time, the father and son developed concepts of how it could be accomplished and how the obstacles could be overcome. With great excitement and inspiration, and the headiness of a wild challenge before them, they hired their crew and began to build their dream bridge.
The project started well, but when it was only a few months underway a tragic accident on the site took the life of John Roebling. Washington was injured and left with a certain amount of brain damage, which resulted in him not being able to walk or talk or even move.
"We told them so."
"Crazy men and their crazy dreams."
"It`s foolish to chase wild visions."
Everyone had a negative comment to make and felt that the project should be scrapped since the Roeblings were the only ones who knew how the bridge could be built. In spite of his handicap Washington was never discouraged and still had a burning desire to complete the bridge and his mind was still as sharp as ever.
He tried to inspire and pass on his enthusiasm to some of his friends, but they were too daunted by the task. As he lay on his bed in his hospital room, with the sunlight streaming through the windows, a gentle breeze blew the flimsy white curtains apart and he was able to see the sky and the tops of the trees outside for just a moment.
It seemed that there was a message for him not to give up. Suddenly an idea hit him. All he could do was move one finger and he decided to make the best use of it. By moving this, he slowly developed a code of communication with his wife.
He touched his wife's arm with that finger, indicating to her that he wanted her to call the engineers again. Then he used the same method of tapping her arm to tell the engineers what to do. It seemed foolish but the project was under way again.
For 13 years Washington tapped out his instructions with his finger on his wife's arm, until the bridge was finally completed. Today the spectacular Brooklyn Bridge stands in all its glory as a tribute to the triumph of one man's indomitable spirit and his determination not to be defeated by circumstances. It is also a tribute to the engineers and their team work, and to their faith in a man who was considered mad by half the world. It stands too as a tangible monument to the love and devotion of his wife who for 13 long years patiently decoded the messages of her husband and told the engineers what to do.
Perhaps this is one of the best examples of a never-say-die attitude that overcomes a terrible physical handicap and achieves an impossible goal.
Often when we face obstacles in our day-to-day life, our hurdles seem very small in comparison to what many others have to face. The Brooklyn Bridge shows us that dreams that seem impossible can be realised with determination and persistence, no matter what the odds are.
Even the most distant dream can be realized with determination and persistence.
Monday, February 21, 2011
Sick Season
I'm definitely feeling better since my reaction last week. I can't say the same for my staff. It seems like everybody around me is getting sick, including my mom. One of my nurses was supposed to work Friday Saturday and Sunday 12 hours each day. She had to call in for all three of them because she was so sick. Friday and Saturday my mom took the shifts and on Sunday we had a nurse come to fill in.
Unfortunately, the PCA that usually works from 7 AM to 11 AM called in sick on Sunday. So my mom came down to help the nurse get me dressed and out of bed. Then the PCA that works weekdays called last night saying that she just got out of the hospital for emergency surgery and she can't work for two weeks. So, looks like my mom will be helping out with that now too until we can find someone. Staffing is hard around times where sickness is going around.
Jenni
Unfortunately, the PCA that usually works from 7 AM to 11 AM called in sick on Sunday. So my mom came down to help the nurse get me dressed and out of bed. Then the PCA that works weekdays called last night saying that she just got out of the hospital for emergency surgery and she can't work for two weeks. So, looks like my mom will be helping out with that now too until we can find someone. Staffing is hard around times where sickness is going around.
Jenni
Thursday, February 17, 2011
Total Reaction
About a week ago I started getting a fever around 100°F (about 68°C). It was so weird because it would come around 9 PM and break by the middle of the night. I was feeling fine and there were no symptoms of any infections, which usually come before the fever. Monday I had a urine culture done just to see if I had a UTI. They called yesterday confirming that I did. Haven't had one since April of 09 so that was disappointing. They put me on a really strong antibiotic called Augmentin for 10 days twice a day. I've taken this medicine in the past for UTIs and never had a problem with it. I took my first dose yesterday at 3:30 p.m.
This morning when I woke up my nurse asked me if I was warm. I told her no and asked why. She said because my face was really red. Then she said that it looked puffier than usual. I looked in the mirror and saw red dots like a rash under my eyes and a white rim around my mouth; perfect contrast to my red-face. Turns out I had had an allergic reaction to the medication. It was kind of scary at first, but the redness and rash went away within a couple hours. Despite the issues, I still went to school today. I'm going to the doc tomorrow to get checked out and prescribed a new antibiotic. Just one more medication to add to my allergies list.
Jenni
This morning when I woke up my nurse asked me if I was warm. I told her no and asked why. She said because my face was really red. Then she said that it looked puffier than usual. I looked in the mirror and saw red dots like a rash under my eyes and a white rim around my mouth; perfect contrast to my red-face. Turns out I had had an allergic reaction to the medication. It was kind of scary at first, but the redness and rash went away within a couple hours. Despite the issues, I still went to school today. I'm going to the doc tomorrow to get checked out and prescribed a new antibiotic. Just one more medication to add to my allergies list.
Jenni
Sunday, February 13, 2011
ICU
The other day my mom was looking through some old stuff and found this picture of me when I was in the ICU. It was taken about a week after my accident. It's interesting for me to see because there aren't many pictures of me from when I was in the hospital. I believe by this time I was pretty aware of what was going on.
I didn't like being in the ICU at all. I was there for three weeks and it was noisy all the time; machines beeping indefinitely, people crying in pain, screaming loved ones over losses. However, the nurses were good to me and I had a lot of visitors from my friends and family. For what it's worth, this made the experience all the better.
Jenni
Wednesday, February 9, 2011
Flying
So, I've been thinking lately about flying because I love to travel and would like to see other places. I'm not sure if I want to be stuck in Minnesota the rest of my life. Don't get me wrong, I love it here with all that snow and below zero weather. But there are things out there for me to see. I know that Christopher Reeve flew places, but he probably had his own plane. I heard it's really difficult for someone in my situation to fly. I would need to buy two seats, one for me and one for my vent. At least two nurses would have to come with, one for the day and one for the night shift. I wouldn't be able to sit in my wheelchair on the plane, so they'd have to carry me to my seat. Then they store the wheelchair down below but I was told they have to disable all of the electrical portions so it doesn't interfere with the plane.
I'll have to make arrangements for staying somewhere wherever I go. It's not like I can just book any old hotel because I need a decent bed so I don't get sores and a way to get in and out of bed so someone doesn't have to lift me. Oh yeah, I forgot about all the equipment I'll have to bring; emergency backup equipment, suction machine, my vent with tubing and extra just in case, batteries and cords, enough supplies for cathing, medicines etc. Sounds like a lot of work and time when you lay it all out like that. I know it's doable, but is it practical. Any suggestions? (Buying my own plane is not an option right now, unless I win the lottery or something.)
Jenni
I'll have to make arrangements for staying somewhere wherever I go. It's not like I can just book any old hotel because I need a decent bed so I don't get sores and a way to get in and out of bed so someone doesn't have to lift me. Oh yeah, I forgot about all the equipment I'll have to bring; emergency backup equipment, suction machine, my vent with tubing and extra just in case, batteries and cords, enough supplies for cathing, medicines etc. Sounds like a lot of work and time when you lay it all out like that. I know it's doable, but is it practical. Any suggestions? (Buying my own plane is not an option right now, unless I win the lottery or something.)
Jenni
Sunday, February 6, 2011
Stress Journal-#68
For my stress management class we have to pick 20 journals to write over the course of the semester. We had to buy a stress journal that has different prompts, questions and scenarios for us to write about. Here is one of the journals I chose and my response.
#68-A Traumatic Experience
"Into our lives a little rain must fall, but it seems that once or twice it becomes a devastating flood, and we subsequently get pulled under and washed away in the currents. Broken bones, the death of a close friend or loved one, and child abuse are just a handful of life's many tragedies. "Tragedy," it is said, "keeps a person humble." It can also leave physical, mental, emotional, and spiritual scars that may take a lifetime to heal. Times like these are often referred to as "the dark nights of the soul."
Reaction may vary, but immediately after experiencing a tragedy, people sometimes talk nervously. This is one of the initial manifestations of grief. This stage is often followed by withdrawal and eventually by a slow reemergence into society. These types of experiences from years ago can affect our outlook and behavior on several issues, often without our knowledge. If you have been spared a personal tragedy, consider yourself lucky. If you have experienced an event of this nature and wish to recount it here, feel free to do so. How did you feel, and how do you feel now?"
Eight and half years ago I was in a tragic car accident. I broke my neck and injured my spinal cord, leaving me paralyzed and vent dependent. In the beginning, it was extremely hard for me to deal with the fact that I'm probably going to be paralyzed for the rest of my life. I kept thinking "how could this happen, why me, what do I do now?" As time went on it got a little bit easier to accept, although I was still in a state of shock. I believe my feelings back then were normal.
I don't think I've ever really been able to grieve about my losses. If I start to think about it, somehow it always seems to get pushed back down in my head. You know how some people are able to just let it all out when a family member dies or something tragic happens. Well, that's really hard for me to do; showing my emotions means being vulnerable, and for some reason I can't do it very often. Which I know isn't really good for you because it's better if one can share their feelings and talk about them. That's one of the core ways people do grieve.
My accident has definitely changed my outlook on life. I feel very fortunate to be alive and don't take anything for granted. I value my life and my things more and try to do good for others. It seems that my accident has had a profound effect on me, good and bad. Yes, it has left emotional and physical scars on me. I am reminded every day of the tragedy that happened when I look at myself. However, I believe I'm a better person today because of it and have learned a lot over the past years. I've also met some wonderful and amazing people with whom I never would've met if this hadn't happened to me. Overall, although there have been some bumps in the road and challenges to overcome, I am still here and trying and that's all that matters.
Jenni
#68-A Traumatic Experience
"Into our lives a little rain must fall, but it seems that once or twice it becomes a devastating flood, and we subsequently get pulled under and washed away in the currents. Broken bones, the death of a close friend or loved one, and child abuse are just a handful of life's many tragedies. "Tragedy," it is said, "keeps a person humble." It can also leave physical, mental, emotional, and spiritual scars that may take a lifetime to heal. Times like these are often referred to as "the dark nights of the soul."
Reaction may vary, but immediately after experiencing a tragedy, people sometimes talk nervously. This is one of the initial manifestations of grief. This stage is often followed by withdrawal and eventually by a slow reemergence into society. These types of experiences from years ago can affect our outlook and behavior on several issues, often without our knowledge. If you have been spared a personal tragedy, consider yourself lucky. If you have experienced an event of this nature and wish to recount it here, feel free to do so. How did you feel, and how do you feel now?"
Eight and half years ago I was in a tragic car accident. I broke my neck and injured my spinal cord, leaving me paralyzed and vent dependent. In the beginning, it was extremely hard for me to deal with the fact that I'm probably going to be paralyzed for the rest of my life. I kept thinking "how could this happen, why me, what do I do now?" As time went on it got a little bit easier to accept, although I was still in a state of shock. I believe my feelings back then were normal.
I don't think I've ever really been able to grieve about my losses. If I start to think about it, somehow it always seems to get pushed back down in my head. You know how some people are able to just let it all out when a family member dies or something tragic happens. Well, that's really hard for me to do; showing my emotions means being vulnerable, and for some reason I can't do it very often. Which I know isn't really good for you because it's better if one can share their feelings and talk about them. That's one of the core ways people do grieve.
My accident has definitely changed my outlook on life. I feel very fortunate to be alive and don't take anything for granted. I value my life and my things more and try to do good for others. It seems that my accident has had a profound effect on me, good and bad. Yes, it has left emotional and physical scars on me. I am reminded every day of the tragedy that happened when I look at myself. However, I believe I'm a better person today because of it and have learned a lot over the past years. I've also met some wonderful and amazing people with whom I never would've met if this hadn't happened to me. Overall, although there have been some bumps in the road and challenges to overcome, I am still here and trying and that's all that matters.
Jenni
Wednesday, February 2, 2011
Thoughts on SCI
There are over 400,000 people in this country living with spinal cord injuries. They range in age from children to adults. This injury can happen to anyone, at any age. I can only speak of having this injury as a once very active teenager. I believe that unless you are a close family member or close friend of someone with a spinal cord injury, it is difficult to understand what life is like for them. I don’t think most people understand what it is like to cope with the tremendous losses; the loss of the use of your body, the loss of living a normal active life, the loss of some friends. They don’t understand the depression and anger of having no control over your body and life. I am never alone. I have nursing care 24/7. Nothing about me or my life is personal anymore.
I think most people are afraid of the unknown. If people could gain more knowledge about spinal cord injuries, I think they would be more understanding and not be so afraid to talk to the person with the injury. When I go out in public I feel like people are afraid to approach me and talk to me. If they would they might meet a new friend. I think most people would be happy and willing to share their stories of living with this injury. I know I would.
Before my accident when I thought of someone with a spinal cord injury, I automatically thought of Christopher Reeve. I thought of his steps of achievement, his opportunities, and his hope for the world of spinal cord injured people. There is some research that’s gone on to help cure this common injury; however we have a long way to go.
Jenni
I think most people are afraid of the unknown. If people could gain more knowledge about spinal cord injuries, I think they would be more understanding and not be so afraid to talk to the person with the injury. When I go out in public I feel like people are afraid to approach me and talk to me. If they would they might meet a new friend. I think most people would be happy and willing to share their stories of living with this injury. I know I would.
Before my accident when I thought of someone with a spinal cord injury, I automatically thought of Christopher Reeve. I thought of his steps of achievement, his opportunities, and his hope for the world of spinal cord injured people. There is some research that’s gone on to help cure this common injury; however we have a long way to go.
Jenni
Tuesday, February 1, 2011
Enjoy Every Moment
A Dog's Purpose
(from a 6-year-old).
Being a veterinarian, I had been called to examine a ten-year-old Irish Wolfhound named Belker. The dog's owners, Ron, his wife Lisa, and their little boy Shane, were all very attached to Belker, and they were hoping for a miracle. I examined Belker and found he was dying of cancer. I told the family we couldn't do anything for Belker, and offered to perform the euthanasia procedure for the old dog in their home. As we made arrangements, Ron and Lisa told me they thought it would be good for six-year-old Shane to observe the procedure. They felt as though Shane might learn something from the experience. The next day, I felt the familiar catch in my throat as Belker's family surrounded him. Shane seemed so calm, petting the old dog for the last time, that I wondered if he understood what was going on. Within a few minutes, Belker slipped peacefully away. The little boy seemed to accept Belker's transition without any difficulty or confusion. We sat together for a while after Belker's Death, wondering aloud about the sad fact that animal lives are shorter than human lives. Shane, who had been listening quietly, piped up, 'I know why.' Startled, we all turned to him. What came out of his mouth next stunned me. I'd never heard a more comforting explanation. He said, 'People are born so that they can learn how to live a good Life -- like loving everybody all the time and being nice, right?' The six-year-old continued, 'Well, dogs already know how to do that, so they don't have to stay as long.'
So live like a dog: Live simply. Love generously. Care deeply. Speak kindly. Remember, if a dog was the teacher you would learn things like: When loved ones come home, always run to greet them. Never pass up the opportunity to go for a joyride. Allow the experience of fresh air and the wind in your face to be pure ecstasy. Take naps. Stretch before rising. Run, romp, and play daily. Thrive on attention and let people touch you. Avoid biting when a simple growl will do. On warm days, stop to lie on your back on the grass. On hot days, drink lots of water and lie under a shady tree. When you're happy, dance around and wag your entire body. Delight in the simple joy of a long walk. Be loyal. Never pretend to be something you're not. If what you want lies buried, dig until you find it. When someone is having a bad day, be silent, sit close by, and nuzzle them gently. ENJOY EVERY MOMENT OF EVERY DAY
(from a 6-year-old).
Being a veterinarian, I had been called to examine a ten-year-old Irish Wolfhound named Belker. The dog's owners, Ron, his wife Lisa, and their little boy Shane, were all very attached to Belker, and they were hoping for a miracle. I examined Belker and found he was dying of cancer. I told the family we couldn't do anything for Belker, and offered to perform the euthanasia procedure for the old dog in their home. As we made arrangements, Ron and Lisa told me they thought it would be good for six-year-old Shane to observe the procedure. They felt as though Shane might learn something from the experience. The next day, I felt the familiar catch in my throat as Belker's family surrounded him. Shane seemed so calm, petting the old dog for the last time, that I wondered if he understood what was going on. Within a few minutes, Belker slipped peacefully away. The little boy seemed to accept Belker's transition without any difficulty or confusion. We sat together for a while after Belker's Death, wondering aloud about the sad fact that animal lives are shorter than human lives. Shane, who had been listening quietly, piped up, 'I know why.' Startled, we all turned to him. What came out of his mouth next stunned me. I'd never heard a more comforting explanation. He said, 'People are born so that they can learn how to live a good Life -- like loving everybody all the time and being nice, right?' The six-year-old continued, 'Well, dogs already know how to do that, so they don't have to stay as long.'
So live like a dog: Live simply. Love generously. Care deeply. Speak kindly. Remember, if a dog was the teacher you would learn things like: When loved ones come home, always run to greet them. Never pass up the opportunity to go for a joyride. Allow the experience of fresh air and the wind in your face to be pure ecstasy. Take naps. Stretch before rising. Run, romp, and play daily. Thrive on attention and let people touch you. Avoid biting when a simple growl will do. On warm days, stop to lie on your back on the grass. On hot days, drink lots of water and lie under a shady tree. When you're happy, dance around and wag your entire body. Delight in the simple joy of a long walk. Be loyal. Never pretend to be something you're not. If what you want lies buried, dig until you find it. When someone is having a bad day, be silent, sit close by, and nuzzle them gently. ENJOY EVERY MOMENT OF EVERY DAY
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