A nurse mentions surgery as my consciousness quickly fades. Most of the next week or so is blurred by a morphine haze. I wake up in a neck brace, and realize I have absolutely no feeling below my armpits. The muscles in my neck are on fire with pain. I have a feeding tube in each nostril and my arms are littered with over a dozen intravenous lines. A machine is breathing for me. Is this really happening? This must be a dream.
Suddenly the memories come flooding back. A ski jump. A sled ride. A helicopter. A hospital visitor plays with my hair and brushes over a thick scab. Shortness of breath. A clamp screwed into my skull. A doctor trying to "realign" my spine. Nothing but horrifying snapshots of chaos, confusion and pain. Many of these memories will go on to haunt my dreams forever.
Of the eighteen nights I spend in the intensive care unit, I sleep only one. This is mainly because the countless monitors I am attached to sound off relentlessly throughout the night. The nursing staff tells me that these monitors are networked to every patient on the floor, so when it beeps three times, it’s me… twice, it’s someone in another room. I suffer endless anxiety attacks, because every time I hear a beep, I can never remember if it was the second or the third.
Adding insult to injury, the ventilator tubes in my trachea block any air from passing over my vocal chords, leaving me without a voice. I mouth words to people, most of which they cannot decipher, and I must resort to spelling words out letter by letter. Having no voice makes my nights even more unbearable. I’m left alone for just minutes, but it feels like hours. Panic sets in after losing count of the monitor beeps, and I know I need drugs to combat it. Problem is, I have no way to call for help. All I can do is I stare out the door and watch as my nurse passes by a number of times. Completely helpless, I begin to cry.
Teams of doctors invade my room with SWAT-like efficiency all hours of the day, barking orders back and forth. They never look at me, talk to me, or even say my name. I’m referred to only by my condition: C3-C4 complete quadriplegic. They disappear as fast as they came in, leaving me, my family and the nursing staff without a clue as to what transpired. When we finally corner one of them, he callously informs us that I will never move again, and there is a high probability that I will never breathe again on my own either. More tears.
One morning, a doctor wrongly informs me that I am being sent home because there’s simply nothing left they can do for me. Two days later, another doctor comes in and tells me they’re moving me to a hospital more than two hours away from my home for rehab. Another false statement. Finally, after two and a half weeks of what seems like an eternity in hell, I’m finally transferred to a rehab facility close to home. Little do I know, my struggles have only just begun.
Just a few weeks into rehab, I find out that the short-term health insurance policy I purchased after graduating college does not cover medical equipment for the home, forcing me to go through Washington State’s Department of Social and Health Services (DSHS) in order to pay for these necessities. This means that every single piece of equipment I need requires lengthy letters of justification from both a doctor and a therapist before the DSHS will even consider covering my medical expenses. I’m warned that nearly every request is denied the first few times, calling for further explanation as to why each item is absolutely vital. My request for a wheelchair is turned down at first because DSHS doesn’t think I need footrests.
Suddenly I’m face-to-face with my government’s absurd health-care system. Prior to my accident, I viewed politics as nothing more than semantics. "Why should I vote? It’s not like any of this will ever affect me directly." I can’t help but recognize the irony. The system I once paid absolutely no attention to is now the very system I must rely upon. A system that lacks compassion and even logic at times.
After developing a deep pressure sore on my tailbone, I become painfully aware just how backwards the system is. One of my physical therapists informs me that skin breakdown is one of the biggest causes of compromised health for quadriplegics and paraplegics. I learn that pressure ulcers can lead to life-threatening blood infections, which can ultimately lead to amputations. Because of my limited mobility, I will have to be extremely careful with my positioning for the rest of my life. I find out that sleeping on an air mattress will greatly reduce the risk of skin breakdown. In the next breath, I am told that unfortunately, this is one of the items DSHS refuses to pay for. In the event that I develop a pressure sore at home (downright inevitable on a normal mattress), an air mattress will be rented for me until it heals, and taken away afterwards.
Financially, this makes no sense. Instead of spending a few thousand dollars on a piece of equipment that almost single-handedly prevents skin breakdown, the state will rent me an air mattress indefinitely, only to take it away for a few months until I develop another problem? Apparently so. For some reason, they would much rather pay tens of thousands of dollars on amputations, repetitive reconstructive surgeries and extended hospital stays than make a relatively small one-time investment that would not only save taxpayers money, but also prevent me further pain and mental anguish.
Soon, the term "health-care" begins to feel like an oxymoron. All I see is an industry overridden with redundant stipulations that has become so sterile and heartless it makes people feel more like burdens than patients. I begin to experience the miles of red tape that have caused rehab facilities to forget that "rehab" is short for rehabilitation. The focus is solely on getting a patient physically ready to survive outside the hospital without much consideration for the huge emotional adjustment that is needed as well. Though my therapists object to my discharge, they are forced to let me go because the only thing that truly matters to the state is that I worked my way off the ventilator. When I leave the hospital, I’m in no way prepared for life as a quadriplegic.
Now, I realize that it might be hard for DSHS committees to fully understand my plight, considering most of them have never found themselves in direct need of these benefits, but it’s still no excuse. I find myself almost wishing some of these men and women would see someone close to them end up in a position like mine, as sadistic as it sounds. But if that’s the only way they will understand the devastating effects of their decisions, perhaps it’s necessary. If nothing else, they can expect a continuous stream of letters and e-mails from me until changes are made. Because as it stands now, my life as a state dependent quadriplegic will be unnecessarily difficult due to a system lacking perspective and compassion, a system that seems to be working against the very people it was designed to protect.
I knew the second I woke up on that mountain that I was paralyzed. I had no idea, however, how far my struggles with both my body and my government would take me. I’m currently gathering as much information as I can to present a strong case to my local congressman because, while there is nothing I can do to change my physical situation, I can try to change my political one. All I can do now is stay informed, make my voice heard, and hope it doesn’t take such extreme measures for the rest of the politically apathetic members of my generation to reconsider their obligations as citizens. Because as you can see, it’s a harsh reality to face; finding out that the health-care system you unknowingly put into place by your lack of participation doesn’t really care at all.
Kenny Salvini 
hi Kenny, I just found your site and have sat here and read thru all of it, and it is almost 2am and I have to get up early!! lol….I stumbled onto your site…heard Train and said "hey, I should read this guy". Then when I saw my fav movie listed…THE BOONDOCK SAINTS…I knew I had to stay and read. You have been through so much, I wonder if I could have survived at that age? Like you, I have family and friends that would let me lean till I could make it on my own. You have a great voice. Keep writing, if not here then somewhere!! Now I have to sleep.
i accidently found this site but i like what i.ve read so far,,yes your right about the careless goverment i,m an advocate in canda for the disabled an i myself have a spinal cord injury in florida but came up to canada for our so called free health care but like the states their is more paperwork than a telephone book from la lol..not so funy tthought they reject every first application and then when they do authorize something they show u a cadillac and give u a lemon,, doeas this sound familiar,, anyway i,ll come back and probably ask u how u got this site or blog or whatever they call it this days ,, aperson up north fighting the cause of the inpeersnnal way they threat us ,, your right they should have a person feel the painand agony we go thru Turk i call myself lucky because i came out of my paralazis
Good luck with keeping up with all the comments today! I see that you are featured on MSN\’s home page today. I was yesterday and it was insane! I guess it\’s cool being famous for a day though. 🙂
Kenny, Good Morning. I came in to work this am and was looking at the news for the day and somehow ended up reading your story. I must admit I am not very computer literate but was taken away by your story! Your accident happened to take place on my birthday which was kind of an odd thing. So I had a girl I work with help me so I could send you a message and say hello. Give your dog a hug for me. I have three myself. Animal lover for sure. My dogs are Bagger and Crombie and Fitch. Well thanks for sharing your story. Take care and if I am doing this right I will continue. Scotty
Hey man,
I know what your goin through. I am a c4-c5, my accident happened in 89. Pressure sores and bladder infections do suck, but eventually you will figure out routines to avoid this. The ridiculous medical system that is now an integral part of your life is more dificult however. Having doctors, therapists, and other professionals that know you and will bend the rules is very important. My need is focused around nursing. The way that medicare sees it, if I am not going to leave my house (homebound) then medicare will cover a nurse. If I work or go to school, medicare will not pay. So I should stay home and get drunk and high on painkillers to spend our tax dollars? That doesn\’t work out to well. Keep fighting that sh*t, let me know if I can help.
If it helps you at all, I can say that these things that you miss will become a part of your life again or will be replaced by things just as valuable. Like your skiing, I was into surfing. Eventually I found that a boat on glassy 4\’-6\’ swells and a sunny tropical day is pretty nice too. Believe it or not, I have run into situations that cause, "ridiculous happiness" even as a quad.
I just left a comment as no name. The c4-c5 quad. My email is mrpepperster@gmail.com. My name is Mike.
More power to you. Keep fighting. And you made it to the home page of msn again!
Aly
Who can I write or what can I do to help?
Again, you are truly Amazing Kenny! How can I help? I strongly agree with you and the health Care CRAP! I live in Canada, but I am willing to provide you assistance in any way that I can. There are so many Canadians who want to change our Health Care system to be more like the US, however I know that it would be a HUGE mistake, and definately something irriversable once the Government put it in writing. We pay taxes, taxes and more taxes….all for what? There is a massive shortage of docotrs and nurses. Hospitals are all backed up, with inadequate equipment to use and people are suffering more and more everyday. Ya, let\’s make it so that the rich can afford great healthcare services, can buy thier way out of an ailment, and all of the low income families can suffer! Right on!(NOT)
Cheers to you and trying to make a better tomorrow!
Luv & Hugs
Amanda
I want to reach out and give you a hug! Here is the deal, my husband and I just literaly walked through your shoes…well close. Last October, my husband, an avid sports enthuisiast, broke his spine and became a T-4 T-5 Complete Para. He had trouble breathing, thousands of tubes, sleepless nights in ICU. Another difficulty we faced, was this was all in Italy, so neither Shane (myhusband) nor I understood a qaurter of what was going on. The ups and downs, the constant roller coaster of emotion, and misinformation. I know what you are feeling, I know what your family is feeling. I am going to first tell you this, have one of your family members go out and find the movie "Murder Ball"… if you have not seen it yet, it will help, at least it has helped us, and some of our "friends on wheels" as we say. Another thing, I want to email you contact information for us. Shane has many friends that are going through the same thing that you and himself are, he says that it helps to talk to others. Because you are different now, and very few understand how little that changes, yet at the same time, how much it changes. You take care, and write me when you have a chance.
Kala C. Fagan
You go Kenny! I work in the medical profession and see this and other crap everyday. It just really makes me unproud sometimes to live here. So much red tape…for what? Who\’s fault is it? Who can correct it? Nobody wants to take the blame or the responsibility. Nobody cares unless it happens to them! Hang in there! Be heard!
I found your blog this morning through MSN, which I\’m sure a lot of people have.
I\’ve been reading for several hours now, and felt I needed to write. I\’m sure you get a lot of these, but I think it\’s important to tell people when they\’ve touched you.
I\’ve run the gammut of emotions while reading your entries. Most of what I felt was sheer admiration for how you\’ve handled this crisis in your life. Your sense of humor, and lack of bitterness, is so amazing. I smiled and I chuckled ….until I read the right hand section where you listed the things you miss….and then I cried. Most of the things you listed were things that I would anticipate missing were I to become paralyzed, but some really made me think.
I\’m really glad that I took the time to read your blog. Thank you for writing it.
Although I cant give my name. I can give you some possible information. Call the following number for human trials going on Indiana with a device that has shown some improvement in paralysis. Current studies are going on with pre-existing paralysis. I just happen to come across the notation of reading your blog on MSN. Hope this can offer some assistance.
See if you qualify for this treatment, all expenses are paid. I know, as I am a part of this \’happening\’ but can\’t give more information than that. I am not a patient, I can tell you that.
Call : 317-630-6941. Scott Shapiro is the neurosurgeon implanting a device in humans. The first bout is over, and great improvements occured in the patients they used it on. You may qualify to be in the next round. Take care and good luck.
Kenny,
I am one of the masses drawn here from MSN home page. Congratulations on being featured! It seems after reading through your blogs that this is not the first and I can see why. You write beautifully. It was like finding a special book that you just can\’t put down. I hope that one day my son, 15, will be able to find his voice and express himself so well and also have the strength you show to face this roller coaster ride called life. So far so good, his father walked out of his life 3 years ago and never looked back and as painful as it was he did not let it pull him down. Once you find that special lady you will not have to worry about holding her hand because she will know that you hold her heart within yours.
May God bless you and grant you peace!
While I definitely understand that having health care is better than not, I agree that it has a nasty habit of screwing you over when you need it the most. Health care needs to be seriously re-evaulated. I imagine that you have far more issues with it currently than I do, and I know that from my vantage point I\’ve got cause to be up in arms. Write all the politicians, bitch and complain. If they\’ll listen to anyone, it\’ll be you. I think I\’ll take a cue from you and present my case as well. Thanks for the push.
"I\’m mad as hell, and I\’m not gonna take it anymore!"
-m
Featured again – not a surprise.
Our health care system will be something that future generations look upon with disdain, the way we turn our nose up at Renaissance sewage treatment (aka dump it out the window!) or Victorian era cures (bloodletting). Diseases, injuries, everything is psychosomatic – the mind and body work in tandem and influence each other, and if you ignore one, it is to the others\’ detriment. I\’m sorry they ignored your mind, your emotional needs, during such a terrifying time. I\’m sure the love and support you received from your family and friends helped your body heal as best it could in such an otherwise sterile and cheerless environment.
I can\’t help you much – I can only be a witness. And vote. And I do. Best of luck.
I have not been where you are…but I am a rehabilitation nurse so I understand what you have been through.
I have sat with the young and the old and listened to their frustrations be it with learning to do your own bowel care…cathing…dressing..you name it..its like learning evrything all over again.
I have seen the worst of Drs. Nurses…and patients..LOL
Best of luck to you…remember…your life is not over..Just beginning.
Take care
Hello there! I was drawn to your blog while browsing the MSN website. It may seem cliché, but you are one amazing guy. Like so many readers here, your words certainly moved me. It\’s hard to imagine losing everything. I\’m a music student, and my hands and arms mean everything to me because what I do defines who I am. Like you, if I were to lost the ability to lose my hands and arms, it would mean my entire identity would have been lost.
I once worked as a home health aide and many of the patients I worked with were paraplegics and quadraplegics. I can certainly empathize, especially when the government health-care system can be such a sham. I see this kind of crap all the time and not just in health care, but also in other places like welfare.
It sickens me that the elected officials in Washington have turned a blind eye to those who need them the most. The assumption that the needy is often someone who is poor, uneducated, and especially someone who isn\’t white. And that is not always the case. The needy has all kinds of faces and comes from all different walks of life. Make sure your voice is heard!
Hang on, and hopefully someday there will be a cure for paralysis. I\’ll keep you in my thoughts.
I apologize that I don\’t have a MSN space, but I do have a Myspace. Feel free to check it out.
In my best Mary Katherine Gallagher voice from SNL…
"SUPERSTAR!"
That\’s you. Again. Ha!
Hey Kenny,
Congrats on being featured on MSN again, bro… Last time it led to me meeting the love of my life – that little wiseass that commented below me 🙂 hehe
Take careKeith
Like many others I came across your blog this morning and couldn\’t stop reading…I didn\’t stop until I read all of them that were listed. WOW!! I am speechless…your blogs left me in awe….You seem like an amazing person with such an awesome look on life!! God has blessed you with something special and he\’s not done with you…not even close!!! You are going to do amazing things! Your a true inspiration! Someone commented that your blogs were like a good book that couldn\’t be put down until it was finished…That was me this morning. I was mesmorized by your words…by your truth….your a genuine person!! And if you only revealed just a small part of who you really are, I can\’t wait to read more!! You are trully an amazing blessing!! Thank you for sharing your memories!! You are a motivation!
Welcome to Blogworld…my last entry is about some random skirt I found on sale – and I come here to another powerful and well-written entry by Kenny about one of the hot-button issues in this world today.
I\’ve read the stories about crap-healthcare and your story gives me the same reaction; scared-as-hell…as really we all should be. One day you\’re living life, the next day you could be in dire need of something you swept aside the day before.
On another note it\’s interesting to see the comments from people new to your site via your most recent MSN highlight – whereas I\’ve been appreciative of your writings for more than a year now-
Thank you for the continuous insight into a world that is foreign to many-
Hey there, you are amazing! Please go to
http://www.themiracleman.org, this guy healed himself of paralysis. Also try http://www.thesecret.tv.com. You will be amazed at what you are capable of!
Take care
Dear Ken: My name is Ken also and I am a retired police sgt and presently a civil sheriff\’s deputy. I have very few people that I can truly say that I admire or call heros. One of them, passed away several years ago. His name was Andy Katz, a young strapping, good looking, football player in his senior year in high school, 1963. Andy broke his neck in a diving accident and was a quadrapalegic with no movement below his neck. He did however, learn to use limited motor skills for his wheel chair and did everything by mouth. He could draw and he was truly an amazing young man. He was in his 50\’s when he passed away and during his lifetime he developed amazing devices for the "handicapped" and deaf and mute and everything in between. He had his moments but never felt sorry for himself or let others see his pain and frustration.
One day, I had the honor to be the bodyguard for BobbyOrr, Boston Bruins star, and he had gone to a luncheon at a local bank and I walked down to the police station to get my check. Andy was there and had just finished completing the hookup for the deaf and mute to call on a telephone device in an emergency. I spoke with him a bit, and he lit up as he always did whenever he saw me and the school gang. I asked him if he wanted to meet Bobby Orr and he was estatic. I pushed him up the hill several blocks and into the bank and Bobby was just coming downstairs from the luncheon. I went over to him and asked him if he wanted to meet my hero and explained everything to him.
He lit up and told me that it would be an honor and even had his photographer take a picture with him and asked me to be in the picture also. I can\’t tell you the feeling that consumed me but that was one of the proudest moments of my life and happiest. I regret that I didn\’t see Andy as often as I should have and I miss him each and every day. I loved and still love Andy and always will.
I was injured on the job, struck by a cruiser while arresting a car thief. Over the years I have had 7 knee surgeries, with a total knee replacement this past April. I have 3 grown children that I still try to care for and my parents. I am extremely fortunate and my strength comes from my grandmother, my mother, and Andy and very few others. I am here to help others and for reasons unknown to me. There are too many horror stories concerning health issues and veterans that need to be addressed and corrected.
Continue Andy\’s quest for equality and humanity and do not give up hope. You are an amazing young man and a gift from God. I have seen children without legs and arms, with incureable disease and I am eternally grateful for my ability to try to make a difference, even though I am but a pebble on the beach of life. I have lost friends, brothers, to needless violence and others to terrible disease. Yet, through their pain and tragedies, they gave me strength, courage and the ability to look at life as someday it may be for all. My oldest son and daughter care for the mentally challenged and autistic and they too are special and heros and above all, God\’s Angels.
My prayers are for you and your family that you accept your challenge and take inspiration in others who have preceeded you and have achieved greatness for others and in their personal life. There is no doubt that one day you will be able to do what others take for granted and without a second thought. Life is precious and delicate. Your name has been eternally added to the list of Angels among us. I am proud to have met you, although I truly wish the circumstances were different.
Take good care of yourself and be kind to yourself. Your tears are a way of cleansing the soul and filling us with resolve to complete our tasks presented us. My love to your family and to you. Drop me a line and let me know your progress and I will do the same if you send me your email. Until we talk again.
Ken
Ken, wrote you a note. Email is MrKGCop@hotmail.com. Give me a shout. This is just the beginning. Ken
Once again, the perfect song…… coolio, you MSN Rock Star you…..
😉
j
I have started this about 10 times and every opening line seems trite. I came across your blog while checking my email and felt compelled to read it. I am currently a student of Occupational Therapy (OT) who plans to specialize in Spinal cord injuries (SCI) and Traumatic Brain Injuries (TBI). I don\’t think I have to tell you to be careful of any "experiemental" processes or procedures, true the medical field is progressing by leaps and bounds but just do remember to do your home work. As to you presenting a legal case to your congressman you may want to check out the AOTA website. They have articles and cases that center on evidence based practices and adaptive equiptment. You may also try contacting a local OT school for resources, I know that the instructors at mine are champions at getting items donated. Another thought is to contact medical suppliers directly and ask for donations of close out items. No guarantee of sucess but you never know until you ask.
I don\’t know how you cope and deal with the dramtic change you life has under gone. The only thing I can tell you is the admiration I have for people like you and the desire I have to help you reach your goals is why I chose the career I did. Please feel free to contact me if there is anything I can do to help you with your case.
Sincerely,
Jaime
Ken– thanks for taking the time to share your experiences, thoughts, and reactions w/us. My name\’s Kevin and I\’m an avid snowboarder living and riding in the Wasatch mtns of Utah. Like everyone who reads your blog, I am touched by your story and admire your strength (and your writing– you have a rich and descriptive ability that\’s very compelling– don\’t stop).
Anyway, I\’m not sure if you\’re familiar w/the National Ability Center (NAC) in Park City, but it\’s a world-class rehab facility specializing in all sorts of recreational therapy. I had the opportunity to do some volunteer work w/their waterski program where I helped paraplegics, quadraplegics, and people w/cerebral paulsy learn to waterski (they do the same in the winter with snow skiing). I\’ve gotta say that as unfortunate as their and your stories are, people like you are so much more inspiring than you can ever imagine. The courage, enthusiasm, fearlessness, passion and never quit attitude that these people had could move mountains. They all had a fire in their eyes. I thought "here\’s a guy w/no use of his arms and legs and he\’s absolutly determined to be strapped into a chair attached to a big fat waterski and dragged behind a motorboat. That takes balls, big ones." These guys and girls are badass.
One time a storm was rollin in and it looked like we\’d have to pack it in early. It was getting windy with lightning in the distance and the wind was making for very rough water. There was a patient with very advanced CP, I think his name is Jose, who absolutly refused to go home w/out getting at least one lap on the ski. My job was to get in the water w/him and essentially load him into the bucket-like seat of the ski then assist w/ the launch, keeping him stable. It was gnarly– the storm was moving closer, you could hear thunder now and the water was really choppy for a lake, but it was still far enough off that it wasn\’t a direct threat and there are plenty of people on hand to ensure safety. Jose was FIRED UP to say the least. He was loving it. Yelling, charging, and laughing, he was like a warrior making a stand against whatever powers-that-be that have rendered him to be in the condition he was in. I think it was his way of giving the middle finger to CP. It was powerful stuff that made me think about all the lazy people who take life for granted and sweat the small stuff. Through the course of a day w/these "patients" a transformation occurs and they become friends, not patients. The few times I helped out I noticed that as time went on I began to notice their ailment less and less and their spirit more and more.
You and others like you who refuse to back down from life are such an inspiration and let the rest of us know that truly anything is possible. You are a warrior. Spiral out. Keep going.
I dig the Dumb and Dumber reference for the song of the day. Ever ski Aspen? I here France is beautiful. Must be Burt Reynolds or something.
Damn… my mind immediately snapped back 11 1/2 years ago to my similar experiences. I don\’t want to get too in depth right here, but it may benefit you to contact me one day regarding some of these items.
As far as being involved in the political process, I have always voted, but like you I ignored some of the real issues at hand. Caring for our fellow citizens and human beings of the world is a vital part of being an American. As the richest country in the world we should not allow any of our citizens to be forcefully warehoused because we do not really want to take care of them where they belong, at home.
Your fellow pain in the neck, Billy (Quadius)
I\’m new to the blog thing, but I stumbled upon your story on msn.com and have read several of your entries and comments that people have left. In reading it occurs to me that maybe the Lord does work in mysterious ways. You have an enormous support system and your words, reflections, and anecdotes seem to move everyone (including me). You\’ve written about certain people in your life being "the glue that holds it all together." I think you got it backwards. You seem to be surrounded by beautiful people, both inside and out, and it seems to me that your strength, light-hearted sense of humor, positivity, love, and general down-to-earth personality is the glue that brings and keeps everyone together. I am humbled by your humilty. I think most people will get a glimpse of what\’s really important in life in reading your blogs. You are testamony that there is still some good and rightiousness in the world. Take care, be strong. Cheers
Did I miss something? And when did you change your name to Ken?
Word.
Hey sweet Kenny, how are you feeling these days? Look at you, famous again!! I must sound like a broken record, but have I told you lately how fan-freake\’n-tastic you are? You do realize that all my friends know you as Kenny… my imaginary boyfriend. 😉 I think all my coworkers have visited your space now, as I\’ve been caught more than once browsing through your space, when I should be working. *titters*. A girl needs a break every now and then, right?? Sheeesh. Anyway, while reading this blog, I got to thinking… you, my friend… should be on the board! The big board… the board that determines what should stay and what should go. It only makes sense to have something who can appreciate the whole gamete. Indeed, health-care… how ironic. It pains me to think of everything you have been through, and go through on a daily basis. But it truly brings me to tears when I read your story, visualizing you laying in your bed, motionless, unable to speak, and nurses and doctors avoiding all eye contact with you, and referring to you as C3-C4. It makes me feel an actual ache in my heart. But you are so strong, you persevere, and you\’re always looking at the next turn ahead. I so admire your character and strength… it\’s uplifting… ironic, don\’t you think? You lift US up, Kenny. (hug). I pray for you, and I hope that you will find a way to really make a difference. You\’re just the right man for the job! Every time I read your blogs, I either laugh, cry… or both. And often, there\’s a few "awwwww\’s" in there too. I could just squeeze you!! Anyway, I\’m just babbling now. Incidentally, I featured you in one of my stories (blogs), I probably should have told you this out of courtesy a while ago. Here\’s the link, if you\’d like to read it some time. Keep well, sweet Kenny… and keep on… ((tight hug)).
http://yvonnespage19.spaces.live.com/blog/cns!FE1B8CE9F602C4F0!479.entry
Hi Ken,
I really am at a loss of words here.. your story along with your writting are both breathtaking and devestating .. just know please, that my prayers are joined with yours.. you have a great following here, and support group..
I pray your day is soft.. hugs ~Hope
Hope your day is going well Kenny…
Did you check out the story I mentioned…I left a comment here earlier with the link. Perhaps let me know if you\’re painting or drawing with a brush or pencil in your mouth 🙂 It\’s truly sexy, don\’t you think? 😉 ha-ha! A sunny brilliance if you ask me. Challenges feel good. Try it. I anticipate what you\’re feeling when you do. Perhaps consider it your next challenge (only if you believe it\’s meant for you to do of course, and not b/c I\’m asking you). You may even see it tie in with your political hopes, dreams and accomplishments. And remember, every attempted challenge is an accomplishment that helps you heal and grow. You are still, and always will be – an athlete. Don\’t you dare to consider it over. Don\’t you dare!
I know you\’re a positive soul, here\’s some further insight for you…
I know how it feels to feel up and down about the wrongs in politics, for politics touch upon so much of life but rarely satisfy or help it. Love can also be the same when one is not true to themselves, therefore not true to others. But that\’s where people can make the world of difference a better place. I once had so much anger and pain. One day I took it and told myself to turn it to feeling love – even though my differences. I took it as a challenge upon myself. It was a self discipline I had to work on – a habit or practice I had to learn, and a desire I had to instill in myself every time I thought about my experience and how it connected with politics. Every day has been a difficult process to get back to who I was. I had never known anger, pain or even dislike before, believe it or not. It was all very new to me. Sometimes I think back and the anger and pain can come back all over again – if I let it – but I think of love instead and it changes everything at that very instant all over again for me, so in turn I\’m not distracted – I go back to the way I was, the person I\’m supposed to be, the person happy, the person born. I could never stay with the feelings of hopelessness and loss, anger, pain, or even feeling cheated, for then I feel a huge disappointment in myself – and that feels more a stranger to me, and one I cannot accept. I\’d rather fight like hell and stay true to me than to break down to someone elses\’ punishment.
Smile 🙂 It feels really damn good!
Kenny,
I forgot to add a link which supports your contention that it is cheaper to prevent ulcers utilizing preventative measures rather than allowing them to occur in the first place.
http://www.decubitus.org/cost/cost.html
Quadius (Billy)
Hi Ken, (just to annoy a certain jealous someone 😉
Great entry
Yo Pinky…
Ahhh the perils of healthcare. Don\’t you love it?
Congrats on MSN. You f\’n rock.
Love, L
How much are you paying MSN anyway? 😉
This is why I first contacted you – I want to do a book about it. I have recently met Patch Adams (you know from the movie where he is portrayed by Robin Williams) he would like to change healthcare and has been on a mission to do so both on an individual basis with patients who he calls by their frist names (thank you) and also politically raising conciousness.
My history with working in healthcare and then being in my own hospital and a former rehab that I worked in truly openned my eyes. I remember at the ER for a follow-up problem the admissions lady wouldn\’t take my healthcare card – I said in between puking – "listen, what ya got in your pocket? cause I work here and this was issued by you all and to y\’all" Needless to say I was allowed in but I looked back at the waiting room at the group of people and thought no way. This is insane.
the amount of follow-up care and the way it is addressed is so stupid that it boggles my mind – yes, pressure sores which cost health insurance millions seem to be paid more regularily than preventive measures. Not to mention the needless pain and risks involved for the individuals. i remember the rehab hospital where I worked in 1993-6 was dealing with this same issue – and trying to make change – they are a great team of caring people and I was setting up continuing ed on the subject, but you are right, depite the few docs that are fanulous and have it right – the insurance companies have made it impossible. At one point the hospital sent part of my insurances (huge company) manual back to them and asked them to clarify a point – would you believe it nearly made it to the top and even they couldn\’t make heads or tails of their OWN manual!! hideous. The thing is is what you are trying to do is spot on with telling your story. The thing that continues to plague me is the correct and most efficient path towards creating change. Through a sort of documentary presentation of sorts I have wanted to cover the issue from a personal view point of making it known that these are not "patients" or "account cases" but people with names by doing a widespread account accross the country and presenting it to congress and avenues I have yet to explore. The hardest part for me currently is trying to figure out exactly what to address about the insurance companies – reading the manuals is like reading greek and that therein is how they get away with it I feel quite often. I have always felt that in order to address a problem I must try to see where everyone is coming from – so what is the insurance companies logic? How did they get away with this and have it come to such extremes – what are the consequences of a different all together healthcare model and what would it mean for doctors that are training and having to pay tuition for med school. Malpractice seemed to want to thwart healthcare insurance companies and was a reason for its implimentation but in reality it has made the life of a doctor less productive not more responsible health care coverage- it was a plan that backfired. Many great doctors have changed location to areas with lower malpractice premiums and/or quit the profession. I\’m rambling but… Anyway there are these new healthcare facilities going up around the country called "Community Volunteers in Medicine" I\’m tracking them and wondering about them. Doctors volunteer their time, but which doctors and do the patients still get the best care – will it help or hurt the efforts to change the healthcare coverage system by bypassing it completely? See the clinic so needed makes the insurance company actually look like it is doing a better job for less money – the number of people needing services unprovided goes down and the insurance companies get to "look" better on paper. But I support the clinics wholeheartly because meeting the people in them makes it personal. I cried when I met the first kid treated there. I knew that for him he couldn\’t and shouldn\’t need to wait for change to happen to get antibiotics nor should I. So it is a cycle and an interesting one taking place. A beautiful community venture to take care of people much the way that Patch Adams started – people taking care of their neighbors and funding healthcare through donations. The communities I have visited would be devasted without these clinics. But still are these clinics the best or are the people in the hospitals getting more just because? Actually in some cases I think the clinics are better than the hospitals. But I still can\’t help the notion or image of someone sitting at a desk at an inusrance company with a grin and changing the bottom line and laying claim to the fact that their company is adequate and doing better everyday.
I\’d love to hear your thoughts Kenny.
I hope my opinions do not offend. I welcome any misinformation to be corrected. I\’d love to be corrected when it comes to this.
-patti
hey you…
I just got out of the hospital… AGAIN! I came down with pneumonia yay me! It feels like I\’m NEVER going to get any better. I feel like the healthy part of my life is over and now it\’s just pain, surgeries and struggles.
I know you can relate, you can remember that day and recite parts of it as thought it was happening right now. I really hope that our futures hold something much better because right now life pretty much SUCKS!
I\’m got my fingers crossed for you as I know you have for me… I\’ve missed everyone sorry for the lack of updates and comments.
It hurts to be on my computer. the abdomen isn\’t playing nice on this office chair.
love you guys,
mt
oh jeeps – I realized in my last comment here that it may seem like I\’m not supporting local community vonlunteer medicine efforts and that is not the case at all. I think everyone should donate to these great new facilities. They are indepensible and so needed. I just hope everyone stays on the insurance companies backs to promote change that\’s all.
You were featured on MSN again?! If anyone needs to be shared with the world it\’s you. Just think of all the lives you will touch from that new posting. I was thinking about you (and Marisa actually too) while I was driving home from work today. I was thinking about how you were planning out your future, just kinda bumbling along through life like we all are, when suddenly something happened and that vision of "your future" was snatched away. Souls far weaker than your own would be broken by something like that. Yet here you are. Not just existing, but making a difference in innumerable lives. I find you both to be exceptional people. Marisa thinks she isn\’t courageous but she\’s completely wrong. She makes me proud to call her my friend.
Keep on keeping on, Kenny.
Oh-Oh, you were featured on msn home page again. Looks like another million hits and hundreds of comments a day. Good for you, you are an incredible communicator.
On your latest entry, as a nurse case manager in a health dept., I see many sides of the "health-scare" issue. Most of us regular government workers have the best intentions, but we also are subjected to jumping through the hoops of bureaucracy. And there is MUCH fraud and abuse and mismanagement in the Medicaid programs. The "government" itself is not caring, because "it" is not a person, "it" can\’t have feelings. So I agree with you 100% in that the most effective thing we all can do is make our voice heard politically. The changes need to come from the top. Those of us at the bottom, who truly do care, don\’t have much power within the organization. So keep shoutin\’, Kenny. You are doing a world of good.
Love to you and those you hold dear,
andrea
kenny, I have been reading your blog for about a year. a good friend of mine got me hooked. This might seem weird but I fell in love with who you are, the way you write and everything about you. I was wondering why you do not have any new pictures of yourself on your blog? I just wanted to say THANKS for the insipration you are, for your writing and strength.
nefertitigodess@yahoo.com
G
Kenny,
That last paragraph or two was the perfect capper to this nightmare-made-reality that turned to even worse suffering because of an outmoded, half-assed health-care system. My mind was ticking off "send this to Congress", "send this to your state rep", and then I felt such relief to learn that you were doing just that.
We need your insights, your spirit, your heroism — a term I figure you may scoff at in your self-effacing way, but you are heroic in the way you ride out the despair — a special voice like yours can change things, make them better not only for yourself but for others. That universal leap can transform just about anything into something better.
Thanks for sharing this with us. I hope you get a larger and larger readership.
Abe Munder
I accidentally ran across your blog one day, boy does it hit home! A VERY dear friend of mine is a parapalegic. We have fought battles with the insurance companies to get medical supplies covered, a new chair covered. The system is a TERRIBLE one! You have a great support system, which means the world! You are in my prayers! Take Care!!!
So apparently I am not meant to write a long comment. . .this is my third attempt at getting my message to you. I lost the last two which took me a good 30 minutes to write each of them-what can I say- maybe I am a bit long winded. This is my final attempt and it will be brief. . .
Your story has touched me in many ways. I am an occupational therapy student and we are currently learning about the health-care system and the politics that go along with it. Ironically I stumbled across your health-scare story and was so touched by it, I read it to my class today. I wanted them to know how truly appaling the health care system is. Going into the health care profession, it is up to us as well as the clients we work with, to make a difference and make our voices heard. Like you, I am 26 and before I got into this field I didn\’t think twice about health insurance or the health care system(except of course the $30 health insurance through school). It wasn\’t that I didn\’t care-it was just that I was never directly affected by it, until about four years ago. I volunteer with a wheelchair sports team and have friends who are in chairs. I see some of the absurdities they have to face with the government and in the end it is a no win situation. I admire your strength and your sense of humor. I find myself laughing my ass off while reading your stories. Your have made an impact on my heart and my political views. I wish you all the best. . .and just know that I am on your side 110% of the way. Like you have, I hope to make a difference in some one\’s life.
Thank you for sharing your story.
Autumn
i\’m so happy to be canadian. our healthcare isn\’t perfect by any means but it\’s definiatly a blessing. hang in there big guy, your a fricken MOUNTAIN, they can push you away all they want but your not going anywhere. 😉
oh yeh i forgot. coudos on the chouce of music. \’change\’ will come, i promis.
This was a wery powerfull entry Kenny…
As a medic in \’my passed life\’ I use to pull people out of cars, and help them get into the hospital as fast as I could drive them there… On my way I would attempt to reasure them that they wher going to be in the best hands possible… becouse I was taking them to the best trauma center that I knew of…
Still though, not often did I have time to go back and ensur ethat thouse whom I took care of for a very short time where OK afterwords.
Qite ofter, when they could not feel me touching them as I was puting them on a streatcher…
Yep, I would LIE.
Not becouse of wanting to be dishonest… But becouse I have seen medical miracles myself as well… It was extreamly difficult to deal with though as a medic, becouse I really wanted to be able to help them to walk.
That is my naturall tendency. And that is why I belive that God has placed me in the filed of Human Resources…where I have been dwelling for the last 4 moths happily.
Take care Kenny… and thanks for writing again.
Anita
Wow, hard to know what to say…..I am a nurse and share your frustrations with the healthcare system we have. It is difficult to work within the system, and do the good you would like to do…It is the challenge of life, working with it as it comes, reaching higher, attempting to impart grace in broken situations, systems, and lives.
Have you been able to obtain an air-mattres at home?
Just wondering, and wondering what I could do to help this happen?
To no name…
The frustration with health care is real… It becomes more and more frustrating as I sit and listen to the political debates on TV of how to fix it, and who\’s responsible for the loss of quality care… Why do some relatively poor countries have excellent health care systems: Sweden is number one in the world… yet their only natural resource is fish… pretty much… well there is some of the ice… and salty water… but other then that? what else is in Sweden?
And US… the best of the best… the ONLY one in the world that actually PAYS for the expensive drug studies and the invention of technology in the health care system… is barely number: 6th for infant mortality rates… and something like 12th for overall life expectancy…
Studying naturopathy and holistic medicine… after just being too frustrated with the main stream filed all together, and my own inability to FIX it (I quit after running my own company doing home health by bringing the doctor to my patients because they where homebound and unable to get themselves to a doctor… It\’s not just that I quit… quite frankly it was Medicare that ran me out of business, because I WOULD use my own credit cards to purchase the air beds, tube feedings, catheters, traches… rent the ventilators… oxygen tanks… duo derm… and I am still 35 000 in debt because of it…. and even though the doctors that I worked with DID fill out the necessary paperwork MEDICARE still did not pay out the money that they owed… I DID not filed for bankruptcy, and chuck that debt as a \’school loan\’ that is costing me 1000 a month… And I am very happy with the fact that I had a chance to help out many… that otherwise would have not had the chance to…. in most of my patient\’s cases… die with dignity, and comfort.)
I ran the other way, because I feel a calling in changing the system… Not by lobbing or trying to ruin my family of 5, but by education people on what I believe in:
I believe in consumer drive healthcare, self care and … natural medicine….
There is an old saying that I keep on my desk:
"He who has health has hope… He who has hope has everything"
As healthcare professionals we have a duty… to give hope to our patients… and then do everything that is in our will to follow through with facilitating their healing.
Speaking of that air bed Kenny…
Did you ever get it?
Do you know anyone that does need one?
I got rid of most of mine, but I do know people that still have them.
They are here in the Midwest, but I think it would not be that big of a deal to get one…
The less expensive ones… when you don’t rent them… cost about 3000 cash… Rent on them is about … 400 a month for the first 6 months… and then Medicare pulls them from underneath you… It\’s always better to just buy one and not pay rent on it, because… and you are a math major… After a year one could have 2 mattresses for that price.
Hope your feeling well.
Anita
A joke for you, Kenny. Smile!
Health Care Two patients limp into two different medical clinics with the same complaint. Both have trouble walking and appear to require a hip replacement. The first patient is examined within the hour, is x-rayed the same day and has a time booked for surgery the following week. The second sees his family doctor after waiting a week for an appointment, then waits eighteen weeks to see a specialist, then gets an x-ray, which isn\’t reviewed for another month and finally has his surgery scheduled for a year from then. Why the different treatment for the two patients? The first is a Golden Retriever. The second is a Senior Citizen. (Could be ANY U.S. Citizen, this was just sent to me by my 70 year old aunt)
Your friend in cyberspace only,
andrea
Hey Kenny! Just popping in to wish you a great weekend.
I in no way can understand what you have been through. But I do understand the whole medical/insurance/healthcare thing. My insurance doesn\’t pay for check-ups. Now wouldn\’t it make sense to pay a little for preventative care then to pay thousands when problems go unnoticed until they are huge?
I do know the importance of check-ups so I always go but unfortunately every penny comes out of my pocket.
I am glad that you are trying to to make a change. Everyone will thank you for it.
Have a good week,
Sarah
Hey Kenny…Your statement…"I find myself almost wishing some of these men and women would see someone close to them end up in a position like mine, as sadistic as it sounds."
Yes…That is a harsh statement… But it is so true…
Better yet…Imagine how much better care and diagnosis would be if all medical professionals involved would live just one day as a quad. It would scare the crap out of them and into compassion and understanding. I feel ya brother…It was the biggest nightmare one can endure in life…Trapped inside your body. Sure…I can at times, piss and moan about all my pain, not being the big tuff guy I once was, and constantly battling fatigue. You bring me back to reality. Looking at me I look like a normal guy. But nobody understands the prayer that is necessary for me to stay on my feet. Kenny…My prayer for you is a future bringing forth many breakthroughs into your life and for your loved ones…Greg
Although I\’ve felt at the healthcare \’system\’ in our country, I confess that I\’ve been far less eloquent in engaging the debate, and far less resourceful than I have the capacity to be than you are.
You encourage me.
I wish you success in your foray into politics. With you leading the charge, the bureaucrats don\’t stand a chance!
Just dropping by to say good morning and TGIF!! 😀 Hope you have a fantastic weekend. *HUGS*
Nebraska Kelly
Although myself not a Quad, the Doctors placed their bets on black jack coming in over me when I had pneumonia.This is the silver lining from the condition had from which I try in vain to reach out towards you through the petty idiom of words. To try to emphatise from an electron, a hieroglyph of words, through time and space, only an image of feeling.Each second each gasp for air is eternal, each breath hades wall of fire, throat parched worse than coarse sand paper, lungs that exert on emptiness, limbs sapped of strength, sucour lay in the constant pain and the vast emptiness of black and white when I blacked out.Untouchable, unexposable to any living breath least death finds me quicker. That was my world. Surely as lighting, the panic of pain and of death finds me. My breath goes sharper, shallower, cutting pain from throat to lungs and out through the limbs and anus.Today, I am fortunate beyond what words can express that I recovered. Yet I feel a tinge of longing and sadness.Yet all those words I have just typed are meaningless, worthless. Only a break through in your life will reach you for which one day words will mean more than their inferences. God be with you.My two pennies worth.
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