Hi everyone,
I have heard from some that we might want to share inspirational stories. I think this is a great idea. We can get to know each other better and learn valuable lessons from the stories.
I can start us out. I will call this story “Do Not Give Up on My Husband!”.
I had been in a coma for 3 months and in hospital for 7 months, and lost all sight in both eyes and the ability to walk. Had lost 80 pounds and had four surgeries and many more procedures. I had finally run out of medical insurance so it was time for me to leave the hospital that had been my home for 7 months.
Very Weak, No Hope:
All doctors who had seen me during my stay thought I had no hope of ever walking again. At this point I could barely lift a spoon to my mouth to feed myself. Since I had just gone blind it was even hard to find the food on my plate and get it onto the spoon or fork without the food dropping off. I could barely sit up on the edge of the hospital bed without great effort. To sit on edge of bed I had to first brace one hand on the bed and push very hard to try to roll onto my side. Once on my side I rolled my legs towards the edge of the bed until they hung over a bit. Then I braced my hand on the bed and tried to push up until I was in the sitting position. Was not able to do this in one step, had to take many small steps. To get into the sitting position I had to walk both hands across the bed. With each small step with one hand at a time would push myself more and more upright. Eventually I was sitting on edge of bed in upright position with my feet on floor. Actually with the neuropathy my feet would not sit flat on the floor. My ankles would not bend much so my feet pointed more in the downward direction. Sitting up on edge of bed was very, very hard to do and required a lot of energy.
How To Get in Wheelchair:
I had learned to get into a wheel chair with a sliding board. My wife Kathy had come into the hospital for this training since she would be the one who would have to help me to get into and out of my wheel chair. A sliding board is a piece of smooth wood or other smooth material used to transfer to and from a wheel chair if you cannot stand. I would first have to sit up on edge of bed which as I described was not the easiest for me. Then I would put one end of the sliding board under my rear end. Kathy would place the other end on the seat of the wheel chair. When everything was secure I would then slide across the board until my behind was in the wheel chair. Kathy would make sure the board did not slip off the wheel chair seat or bed causing me to fall to the ground in between the bed and the wheel chair.
What To Do With Bill:
All the doctors and nurses were deciding what to do with me next now that I had run out of medical insurance and it was time for me to leave their hospital. They were thinking of transferring me to another local County hospital, but they would not take me. I had been in contact isolation the past few weeks and what ever contagious disease that was going on in my body other hospitals did not want. There was a rule against transferring patients who were in this type of isolation. Since doctors and nurses thought I had no hope they suggested I be put into a convalescent hospital where others could take care of me. This convalescent hospital was very far away from where I live and I knew my family or friends could not visit very easily. Not even my wife could visit unless someone would drive her. The doctors and nurses thought this was the only option since I was still too weak to do most things on my own and could not see or walk. I was too weak to question their thoughts or give my opinion on their idea. I mostly had just laid around for the last 7 months and was very weak.
This option of putting me into a convalescent hospital made my wife Kathy extremely furious. The thought of just giving up on a life made her enraged. She said “do not give up on my husband”. “I will take him home with me”.
Bill Goes Home:
Since I knew I was going home soon I asked the nurses if they could bring me to the shower so I could be washed. I knew it would be some time before I had the strength and ability to get to the bathroom where the bathtub or shower in my house was. While still in hospital with lots of help around I took this opportunity to get extra clean. The nurses wheeled me into a large shower area where they took hand held shower heads and washed me thoroughly. They even washed my hair with soap. Over the seven months they had used powder type stuff or other methods to sort of wash my hair in the later months. After showering I put on real clothes, including shoes for the first time. My clothes were very big on me since I was much thinner now to put it mildly. I used the sliding board technique to get into the wheelchair and soon I was being wheeled out of the hospital through the front doors. I felt like an escaped convict and felt very free. I had no more tubes in me and could move my arms and legs freely without these restrictions.
The sun hit my face as I left the hospital. I heard the wind blowing and birds chirping. I could smell all the smells of outside again. I had a great big smile on my face. We still had to get me into the car and were not sure how hard this would be so we both felt a little nervous. Up until now I had many doctors and nurses looking after me, now we were on our own. We did not want anything to go wrong to send me back into hospital. Once positioned the best we could with car door open Kathy took the sliding board and placed one end on the car seat and the other end under my behind. I then scooted along on my behind while Kathy held the board so it would not slip and cause me to fall into the parking lot. Once in the car, Kathy folded up the weal chair and put it in the trunk. Kathy does not weigh much, so lifting the wheelchair into trunk was not easy for her, but she managed.
I had not been in a car for seven months and it felt odd in the passenger seat. I always used to drive. I thought to myself I would never drive again as my wife Kathy started the car engine. I loved to drive and this thought made me sad. As I sat in the car seat I also noticed it hurt my behind. I had lost so much weight I had no padding back there and could feel my bones on the seat. When we drove off I rolled down my window so I could smell the outside air. It felt very odd having wind blow by my face. I looked towards where the window would be and noticed ghost images of things like poles and parked cars whizzing by me as we drove. Later I learned these are images your brain imagines from memory since the current situation you would normally be seeing such images, if you could see. Kathy put on the radio and I was shocked. Most of the songs they were playing I had never heard of. Since I had not listened to the radio for 7 months a lot of new songs had been released I was not aware of.
Soon we were home and pulled into the drive way. I imagined all my neighbors staring at us since they had not seen me in many months. Kathy helped me from the car to my wheelchair with the trusty sliding board method. My neighbors had not seen me since going into the hospital, and I wondered if they thought I would never come home.
Getting into the house was a bit hard because of the steps that led into the house. Kathy would have to tip the wheelchair backwards, then put the front of the weal chair up on the step, then lift the back again to go up each level. Once in the house we went to the bedroom by carefully navigating around furniture. Once next to the bed I used the sliding board to get into bed. I called my cats over so I could pet them. They were reluctant at first since they had not seen me in so long. I missed my cats very much and was very glad to see them again. The hospital would not allow my cats as visitors, I asked. My cats felt so furry and I could tell they missed me. As I laid in my own bed with real covers over me and not those thin hospital sheets I felt so comfortable and safe. I felt so very loved. I am sure glad my wife Kathy did not give up on me and put me away! This was just the beginning of a long and very hard journey for both of us. I could have never had the chance to make this journey if I was put away and had been forgotten about. I am so very, very lucky to get the chance to show the ones who thought I had no hope that help from Kathy, other family members, friends, organizations and others believing and helping me I am not useless! I can now walk again with help from 2 canes. I hold a steady and fulfilling job to provide for my family, help others in my community and world, and take time to experience life and have lots of fun.
Lessons Learned:
• Sometimes you have to take things into your own hands and trust yourself .
•Not even experts know everything.
• Take time to help family and friends. You’ll never know how your help can help the person you are helping. That initial help of one person could cascade into helping multiple people if that one person you took time to help helps others.
Does anyone else have any stories to share? Look forward to hearing them and talking with you.
Bill Tipton
Contributing Author,
Global Dialogue Center
http://www.globaldialoguecenter.com/
Hi Bill. Wow what an ordeal you had to go through! I will now share the long version of my story with all of you.
I was born with a somewhat rare condition called Leber's Congenital Amaurosis, or LCA. Some of you may have heard of it. I have only had light perception since then, and I cannot detect any colors or objects. In third grade I was diagnosed with polycystic kidney disease, and needed to go on dialysis and then get a kidney transplant. I am told that kidney problems are not uncommon in people with LCA. So my parents took me to the hospital and our nephrologist told us all that we needed to know in order to make an informed decision about the type of dialysis I would be on. For those of you who haven't heard of dialysis, it is a means by which the kidneys are thoroughly cleaned in preparation for a kidney transplant. There are two types of dialysis: hemodialysis, where one must go to a medical facility in order to receive daily treatments, and CAPD, or continuous ambulatory peritoneal dialysis. The latter is what my parents chose. This decision was made because my mom was teaching fulltime and my dad was still in his residency at the hospital. So my parents asked the school nurse, a trusted friend from church who had been in the medical field for quite some time, if she could give me the treatments. She agreed to do this, but the district superintendent said no way. I forget how this all was resolved, but the school nurse was finally given the go-ahead. So I went to her office once a day and she would hook me up to the dialysis machine that was provided by the hospital. In CAPD, a catheter is inserted into the stomach via a small incision. This catheter is attached to a bag containing the dialysis solution. When each treatment was done, the nurse would unhook me and I returned to class or lunch. The donor for my transplant was my mom, and everything went as expected. During my hospital stay I received get-well cards from everybody, and visits from a lot of friends and family. I was then discharged from the hospital when I felt well enough, but only when everyone had proof that my new kidney was doing what it was supposed to be doing. That all took place in 1984, and my family and I were living in Hershey, Pennsylvania. At the end of that year my dad got a job transfer, and we moved to Wilmette, Illinois. Then about six years after that we moved to the nearby suburb of Kenilworth, because we wanted to be within walking distance of the high school. I started seeing a pediatrician who had a private practice. He eventually retired, and referred us to somebody who had just finished her residency. By that time I was in need of a second kidney transplant. What's ironic about this time is that the doctor I started seeing was actually the head of hemodialysis for the hospital. I went on CAPD again, and a sister of mine donated a kidney to me this time. A few days before the second transplant, I had a freak accident which I will briefly detail. My mom and I had just come out from a dialysis class at the CAPD unit in the hospital. My mom and I had to attend 4 CAPD training sessions, since the technology had been upgraded. We decided to take a brand-new escalator down to the lobby after the final session. So I got on first, but somehow I tripped and fell down the escalator. My mom attempted to grab me by the shirt, but it was too late. I needed stitches in my leg, and my transplant was in jeopardy. However, on the morning of the scheduled surgery my leg was carefully X-rayed, and the doctors said it was fine to proceed with the transplant. I am now feeling great again healthwise. However, there is a big part of my life that is missing: a job. I have had absolutely no success convincing my state VR agency that I need services from them. Actually to be honest I don't really want their services anymore, but I guess I have to have them whether I like it or not. Despite having a learning disability as a result of the LCA, I am very bright if I dare say so myself. I just haven't been given a fair shake at all by my state VR agency, and I really think that is a shame. I went to their website and looked for information about the Client Assistance Program. The website says that anybody can receive services from the Client Assistance Program. But when my mom and I actually talked to a CAP representative we were told that I would have to be an active VR client. So I don't know what to think or do at this point. I will have to consult with some people and see what the consensus is. I probably shouldn't go into too much detail about this, but I had a VR counselor once ask me if I had ever thought of killing myself. I kid you not. I was about to meet with her regarding my job search, and my job coach was in the office right there with us. I had done absolutely nothing to trigger the suicide comment, it just came flying right out of the VR counselor's mouth. I have never wanted to kill myself, and I told her that. Then she immediately changed the subject back to the never-ending job search. She didn't even tell us she was glad that I had never been suicidal, but the job coach told me he was very thankful I hadn't been suicidal. It is things like this that really make me want to just go banging on VR's doors until they come running out in sheer panic. Thanks for reading.
Posted by: Jake | May 10, 2006 at 01:22 PM
Hi Jake,
It sounds like you had a hard time of it. Also sounds like your attitude has helped you through your difficulties. I hope your kidney problem is resolved with your transplant. I was on dialysis for ten weeks or more when I was in a coma. I am very lucky my kidneys started working again and I no longer nee dialysis. I was also lucky,( if you can call being in a coma lucky), that I was in a coma at the time of my dialysis treatments and do not remember anything about the treatments.
I wish you the best in your job search. Keep at it, like you have done your whole life and you can do it. Do not give up hope. Believe in yourself. Picture in your head that you will succeed and find a fulfilling job that you enjoy.
Thanks a lot for sharing. Does anyone have anything they wood like to share? Any thoughts.
Bill Tipton
Contributing Author,
Global Dialogue Center
http://www.globaldialoguecenter.com/
Posted by: Bill Tipton | May 13, 2006 at 06:25 PM
Hi all, hope everyone is well.
Was reading an interesting story I thought fit into our topic of inspirational stories I thought I would share. Have you ever heard of Richard Radtke before? I had not until now.
Richard Radtke is professor of biological oceanography at the University of Hawaii's School of Ocean & Earth Science & Technology. An authority in fish biology and an American Association for the Advancement of Science Diplomacy Fellow, he is the first handicapped scientist to accomplish research in Antarctica, for which he was awarded a U. S. Presidential Commendation.
A couple of quotes from Richard’s story
I've come to realize that it's not what happens, but what I do, that makes the difference.
I had been accepted for a prestigious post-doc in Canada, and I was going off to adventure.
Two years later, I was diagnosed with multiple sclerosis, and the bottom pretty much dropped out of my world. At 6'4" and 220 pounds, I was proud of my physical strength, pleased to carry sofa beds up stairs and help people move into their apartments. I couldn't imagine my life without that strength and ability.
During the first couple of years, I examined my life and its tenuous future. I had been given books that depicted life with MS as one dependent on others, curtailing life's most rewarding activities. They were horror books that shook my very being.
One long night I came to an important conclusion. I had two choices: I was either going to terminate my life while I still had the ability, or I was going to live life the way I wanted to live. I chose the latter. It's been tough.
The trip to Antarctica was arduous, at best; still, I accomplished my research on Antarctic fish. I was able to touch fish that, as a boy in Indiana, I'd dreamed of studying, and I became a part of the South Pole drama I'd read about. I learned I could still live my life the way I wanted.
I have been in a wheelchair since 1984, a quadriplegic for almost 14 years. Now, at age 48, all my movement of going to different places, movement in taking care of myself, and even my bodily functions has to be addressed by someone else. Without the strength and mobility I took such pride in, I once thought I'd be unable to contribute to society and would only be a taker or receiver. I have come to realize that my contributions can come in other than physical forms. I have taken on my new charge with a vengeance.
Read Richard‘s story at http://www.wabash.edu/Magazine/2001/SummerFall2001/turningpointsummer.html
Some thoughts that came to my mind when reading.
• Now that I have lost a couple of my physical attributes I to have found ways to compensate to overcome what I am physically missing in life. Most of the time I do not even notice I cannot see anything and cannot stand up without something to pull myself up on.
• I think with the tragic loss of my eye sight instantly and loss of complete leg use I still have managed to lead an productive life. Not to say there has not been challenges; there has been for sure.
• Just because we are labeled as disabled, does not mean by far we cannot contribute to society. I think at times we can even be more productive in our professions and contribute to humanity than people who might not have a disability.
Look forward to hearing your thoughts and other stories.
Bill Tipton
Contributing Author,
Global Dialogue Center
http://www.globaldialoguecenter.com/
Posted by: Bill Tipton | May 13, 2006 at 07:03 PM
Hi All,
Sincere thanks to Bill for opening this forum, a great place to share & network! In reading everyone's contributions, I find myself reflecting on my own situation more deeply, while feeling a desire to contribute myself.
A bit about myself, my name is Erich and I live in Massachusetts with my wife Lisa, 8-month-old daughter Ellie & Border Collie puppy Charlie. I am 33 years old, and was diagnosed with Retinitis Pigmentosa at age 3. RP is a multi-faceted visual condition which gets worse as I age, leading eventually to total blindness. In my experience, the two most challenging components of RP have been night-blindness and tunnel-vision.
There is no doubt in my mind for a person with a degree of physical limitation, the mere act of getting out of bed and going through the day-to-day takes more energy than it otherwise would. What moves me especially about Bill's & Jake's contributions (Richard Radtke, too! Also, Google "Marla Runyan" if you've not heard of her...) is that it seems we've all reached similar conclusions: "Just Do It". As Nike ads of a few years back have stated, no matter what the obstacles or challenges, the most important thing we can do is to get out there and do it! When given the choice to attend an event in-person vs. via webcast/teleconference, I applaud the decision to be there live.
That being said, I really need to be better about this myself! Even at age 33, I find that so much of my mental energy seems wasted with concern about what others think. How do we stop caring about this? And should we? It's hard. For example, my daytime central vision is still useful enough to allow me to navigate well-lit areas reasonably well. I have a white cane I use at night or in dim settings, which at this point is largely to alert others that I may not see them. I am struggling with switching from times of not using the cane to using the cane. Case in point, I work in inside sales, which often calls for more socially-geared work functions, after work hours. I have about 200 co-workers who see me all day long, navigating my way around the office unassisted. Move this scene to an after-hours business social in a dimly-lit restaurant or hotel function room, and my ability to interact comfortably is severely limited. In this setting, I can no longer see or recognize faces with ease, cannot see hands extended for a handshake or comfortably move to or from the bathroom without aid. Logically, I should be simply pulling out the cane to tell everyone "Hello, if you go to shake my hand, I might not see it" and "Sorry about crushing your foot with my 210-lb frame, but I couldn't quite see you". I'm not finding it that easy, though. In my estimation, far too much of my time is spent worrying about what peers who've seen me all day without a cane thinking I'm nuts because I now have a cane, and they don't completely understand that blindness vs. sight also includes low-vision. Anyways, I'm venting a bit, but I digress.
The point is, get out there and do it. That's living. People immersed in their day-to-day's are generally not noticing every little detail about what I'm doing, and many are more concerned with the fact that they need to stop for a loaf of bread and a gallon of milk on the way home. Continue to push ourselves and our limits, and be unencumbered by what others may think or do. It's not about them, anyway.
Speak with you soon,
Erich Manser
Posted by: Erich Manser | May 15, 2006 at 08:38 AM
Thanks for a great website! I am a social worker in a dialysis clinic and was looking for inspirational stories for our patients.
Posted by: Andrea Vidrine | May 19, 2006 at 02:32 PM
Thanks Bill. Yes, I have indeed had a hard time of it. Judging from what I have heard over the years from various voc/rehab personnel, and also having very good knowledge of the Internet and putting that knowledge to use, I have found that VR counselors most often fail to think outside the box. I truly think this is something that needs to change immediately. In another posting I mentioned my FLFP team, and I am going to really get serious and set up a meeting with all of them to see what we can come up with. The team consists of my parents, my roommate's mother, (his father is deceased), and two friends. One of these is a friend from church, and the other is someone I met through a nonprofit organization in which I took part. My parents both work full-time, and these two friends also work full-time. My roommate's mother is retired. An uncle of mine, who happens to be an O&M consultant, is also on the team but he lives and works in the Seattle area.
Posted by: Jake | May 19, 2006 at 06:03 PM
Hi Andrea and all who have joined our conversations,
I am so very glad you and others have found us!
Your dialysis patients must be very happy to have such a compassionate person helping them. I have a feeling they can sense your true caring. I know when I was in hospital I could sense the true caring of the nurses and doctors taking care of me night and day.
I ride paratransit to and from work. Many times in the early morning I ride with dialysis patients. They give me inspiration when I talk with them. Some are on their way to treatment and some are on their way home. Sometimes possibly because of treatment they might not feel like talking much. Even so everyone I have talked to is so pleasant and thoughtful. By the time I get to work my outlook on life is even higher after getting the privilege to meet a new person with such a good attitude when things are not going as one would like.
Thanks again for finding us. Hope you and your patients find our information, tips and stories valuable and in lightning. Please share anything, if you like.
Hope we hear from others as well. Have a great day.
Bill Tipton
Contributing Author,
Global Dialogue Center
http://www.globaldialoguecenter.com/
Posted by: Bill Tipton | May 20, 2006 at 01:46 PM
Bill, in your last entry you mention that you took paratransit. How was your experience with the service? I ask because I was also a paratransit rider at one time, but I had nothing but problems with the service. Not to go off on another of my tangents, but I absolutely hated getting up at the crack of dawn the day prior to my scheduled ride and calling in, only to either be told right then and there that all my chosen times were booked, or to be called later that evening and be told that I might have to cut class early in order to make my ride. Half the time I wasn't even told that the ride would be late or early, or anything like that. Were you ever late for a dialysis treatment? I would think that late drop-offs for medical appointments/treatments would constitute some sort of legal action.
Posted by: Super-Fly! | May 23, 2006 at 07:29 PM
Hi Bill. This really is a great way to know that we really aren't alone or that much different from others who have suffered an illness or disability.
My story is rather long, so I'll give the short of it.
I'm 46 years old, married to a wonderful man, and have a great dog Maggie. Unfortunately I do not have any children of my own.
I have survived a double brain aneurysm which was about 12 years ago. I have a low white cell blood disorder, hypothyroidism and fibromyalgia.
Might sound like alot, but I'm so grateful I'm still here and plugging along.
I just wanted to say that the number one thing that kept me going was my humor. I think people really need to make fun of their illnesses or disabilities and share that humor with everybody.
It puts people at ease when they have no idea what to say to you. I feel it gives others inspiration and if the time would come when they have to deal with something catastrophic, maybe it will be a little easier for them to know they will be okay, and still can keep going if they choose to.
Bill, keep up the great work!
Joni Waseity Beadle is an author and entrepreneur for
In Sickness and in Wealth, a continuing education and business
developing company, inspiring others with an illness or disability
to change the focus from their illness, to focusing on their dreams and goals.
Sign up for my free newsletter at: http://www.insicknessandinwealth.com or
visit my blog at: http://www.thejourneyofjoni.com for health articles, work at home ideas and successful heart felt stories plus much more!
Posted by: Joni | March 26, 2008 at 10:20 AM
Hi Bill. This really is a great way to know that we really aren't alone or that much different from others who have suffered an illness or disability.
My story is rather long, so I'll give the short of it.
I'm 46 years old, married to a wonderful man, and have a great dog Maggie. Unfortunately I do not have any children of my own.
I have survived a double brain aneurysm which was about 12 years ago. I have a low white cell blood disorder, hypothyroidism and fibromyalgia.
Might sound like alot, but I'm so grateful I'm still here and plugging along.
I just wanted to say that the number one thing that kept me going was my humor. I think people really need to make fun of their illnesses or disabilities and share that humor with everybody.
It puts people at ease when they have no idea what to say to you. I feel it gives others inspiration and if the time would come when they have to deal with something catastrophic, maybe it will be a little easier for them to know they will be okay, and still can keep going if they choose to.
Bill, keep up the great work!
Joni Waseity Beadle is an author and entrepreneur for
In Sickness and in Wealth, a continuing education and business
developing company, inspiring others with an illness or disability
to change the focus from their illness, to focusing on their dreams and goals.
Sign up for my free newsletter at: http://www.insicknessandinwealth.com or
visit my blog at: http://www.thejourneyofjoni.com for health articles, work at home ideas and successful heart felt stories plus much more!
Posted by: Joni | March 26, 2008 at 10:21 AM
Hi Bill,
If you would be interested in receiving my book "The Fire Within" and music CD "Recovery" I would be pleased to send it to you for review. In short, it's my life story in words and music.
The book, The Fire Within, and the album, Recovery, tell deMeyer’s remarkable life story in words and music. They chronicle his early days as a traveling musician during the sixties and seventies with pop stars Friend & Lover, the Chicago production of Hair, folk legend Bonnie Koloc, Kevin Cronin of REO Speed Wagon, and numerous other artists of that era, his intensive effort to recover from a life changing spinal cord injury, his marriage to Elle (who first came into his life as an occupational therapist at the Rehabilitation Institute of Chicago) and his struggles and triumphs in the world of business as he turned away from music and put his creative fire to work in different venues. Recovery and The Fire Within mark deMeyer’s return as a serious musician and songwriter 30 years after the accident, and his debut as an author. Each work stands on its own, but taken together they weave an inspiring story of refusal to let the physical impact of the accident (he never regained functional use of his left side) limit deMeyer’s growth as a person and musician.
If you would care to contact me with any questions, or learn more about my book and Cd, please visit my website www.chazzdemeyer.com
Thank you for your time and consideration.
Regards,
Chazz deMeyer
Posted by: chazz deMeyer | March 25, 2010 at 09:08 AM