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    Kath, thanks for asking but we didn't have any real problems from the hurricane. We had about 8" of water under the house, but that's why all the houses here are on stilts.

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      Kate, would you mind giving me an idea of what your book is about. I always wanted to be a writer, from the time I was in high school. My journalism teacher was trying to get published at that time and I use to proof read for her. Funny ting was, she was an ex-nun, but goodness the things she would write, not very nun-like I assure you. Anyhow, she started me on the bug and I even had a short story printed in a magazine. Seems like a lifetime ago.
      Actually 21 years ago. But, The responsible side of me saw it as a dream and not an "adult" profession. So , I became a nurse and went off to save the world.

      So funny now....my daughter wants to be an artist, and I support her wholeheartedly. Life is too short not to follow a dream. It took me becoming an adult to understand that.

      Anyhow, I would love to hear about it.

      Stacey

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        Stacey--I'm writing a memoir about our first year dealing with sci. It starts on the day of the accident and ends one year later . . . it's coming along pretty well, though there are days when I can hardly go to my desk because it hurts to remember. I started writing it about a year ago-for myself, to sort out what the hell had happened in the only way I knew how, which is to say, in the form of a story. Then I realized that my kids would one day wonder about the actual events, so I started thinking of their grown selves as the audience. They were 10 and 12 when it happened, and pretty traumatized . . . I've spent enough money on therapists to know that some kind of record might be helpful.

        I already had a writing group; before he got hurt I was working on a short story collection and getting started on a novel . . . never really thought about writing memoir! So I started reading this project to them, because it was all I had to bring when it was my turn. Their responses convinced me that other people than those of us directly involved would find it worth reading. Also, I started to think about how rare it is to read anything meant for families. I mean, there are lots of "patient narratives" (do a search on that category at barnesandnoble.com!), but very few books like the one I'm making. It isn't really turning out to be a medical story, though that's definitely the background against which it moves.

        Anyway, I'm far enough along to be looking for an agent. Also, old enough to know that it takes a major miracle to publish anything. Thanks for asking--did you keep a journal? I did, plus I got his hospital records, good God. There's some mighty disturbing stuff in there.

        Example: One of the nurses noted in his chart that I was making it impossible for him to sleep, because I insisted on waking him up every time his oxygen sats went down. The truth was that I would be sitting beside his bed, weepy with exhaustion and falling out of the chair, while he struggled to get my attention so I could go chase down somebody to quadcough him. I caught this particular nurse asleep at the desk, which is why I was afraid to go home. He'd lost his voice when they operated (paralyzed vocal cords!) so he couldn't even call for help. Oh, my. That was definitely then.

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          Vicky - Sorry it's taken me so long to respond to your post, which tugged at my heartstrings. How many times I've felt the same way when Matt goes to a concert his friends are performing in; where, in the past, he would have been right there at the stage, yelling and clapping with the rest of them. Now, they carefully park his chair by the side of the stage, and position someone so he doesn't get knocked over. What makes me angrier is the disappearance of some of his closest buds - the ones who swore undying devotion and friendship. They've fallen by the wayside like so many leaves off the trees during autumn. Am I bitter? yes. Angry? yes. Like to strangle them sometimes? yes. I know they've all had to deal with the emotions of Matt's accident; but - it hurts to see him hurt at his friend's desertions.

          I wish the best for Bri; I think it will be good that she'll be meeting young folk who only know her as she is now; they have nothing to compare to. They'll see the wonderful young woman she is, and the chair will take a 'back seat' to their relationships with her. (HUGS)


          Kath - I know the boxes will be there tomorrow - and tomorrow - and tomorrow! We're actually making a little progress - I only have 5 more boxes of cookbooks to unpack! [img]/forum/images/smilies/biggrin.gif[/img]

          _____________
          Tough times don't last - tough people do.
          _____________

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            Kate, I think you are so brave. I tried to keep a journal. I sat down many times to do so, but just never could. IT was too painful. Instead, I would just sit and cry. I still don't think that I could do it.

            This past weekend a young man was in an accident at the local county fair. He broke his neck at C7. He's only 27. My heart breaks for that family. I've left my number at the hospital for the famly just in case there is anything I can do for them such as getting them onto this site. I know at that time I was begging for someone to talk to, someone who had been there and could tell me that I could get through it. I would have loved to have had a book to read, I just wanted to know that I wasn't alone. Friends and family tried, but they didn't have a clue what was going on when they weren't around. They never saw the despair in his eyes. He was so good at putting on a front when others were around.
            I needed affirmation that life would go on, that caring for a spouse with an sci was possible. There certainly are not a lot of resources around here. I found this site by luck and thank God everday that I did. I just want to make a horrible situation a little easier on another family, directing them here so that they will know they are not alone. Besides, there is so much information here and hope.
            Kate, keep on writing. Books like yours need to be there. Friends and family mean well, but they don't understand. I actually got into an argument with a well meaning friend today who thinks that Joe is too dependent on me. It's only been 10 months since his whole world changed. It worries me sometimes what would happen to him if something happened to me.

            By the way, I had to laugh reading your nurse story. I can just imagine what was said about me! I refused to go home when he was in the ICU. I was on those nurses like crazy when he was in rehab. I let nothing slide, I expected nothing less that what he deserved. Many mornings I arrived at rehab to have the nursing director meet me at the elevator so she could explain her side of the story before Joe told me what had happened during the night!
            Nothing worse than having a patient whose wife is a very loud nurse!
            In my defense, though, I give my patients the same care I would want my family to have.
            Anyhow, keep writing. Books like yours need to be out there. I would love to buy your first copy!

            Stacey

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              Hi, all - Sent out my new email addy, but not sure if I got everyone; if not, you can reach me at:

              marmalady1@comcast.net

              Can't believe someone else already had 'marmalady' on comcast!!!!

              See my post in Care, re what we've been through with Matt since the move. Hopefully it's coming to an end, and we're finding some good folks.

              http://carecure.org/forum/showthread.php?t=6362

              _____________
              Tough times don't last - tough people do.
              _____________

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                Wednesday 11:20 pm

                Back at this desk again. It's an old scarred-up oak thing that belonged to Bruce's grandfather. Sits in the room called the "dining room", because I think that's what it was designed to be, though we've never used it for that. We don't have a dining room table, and if we did, it would quickly become covered with loose mail and books and things we can't seem to figure out where to put.

                At first this was a kind of extra family room--we had an old couch somebody gave us that the girls liked to jump on, and piles of their toys against one wall.

                Then when they were too big for toys, we put one of the computers here, plus the dog's kennel. Now there's a lift where the kennel was, and this desk, and nothing else. The old couch is long gone. It's become kind of a glorified hallway! The dog got moved out to the deck, which doesn't seem to trouble him . . . anyway, here I am at the family desk, not going to bed.

                I won't be around for a couple of weeks--we're taking our whole dog and pony show out to the midwest to visit Bruce's family. Travelling by car, not because of airline scares, but because I want to see Montana, and we have some stops to make along the way. Be well, all of you!

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                  Dare I - should I - oh, well, here goes - do we even want to think about an autumn Caregivers Gone Bad? I really would love to get us (or as many as we can!) together! The private topic is still open for any 'private' responses!!!

                  Things are beginning to settle down here; the remaining boxes are just becoming part of the decor! [img]/forum/images/smilies/biggrin.gif[/img] I have never had a more stressed out move. I just did the DMV thing - thought I had all my ID but had nothing to prove I live where I do! And they couldn't get their tiny little minds around the fact that Matt doesn't own his van - the trust does. Just like a business. I finally said, look, if the van was owned by Disney Enterprises, you wouldn't expect Walt Disney to be here, would you???? I hate beaurocrats!

                  We are finding some nice docs for Matt, tho; a urologist we can work with, who's literally right around the corner (and the hospital is 5 minutes away), have a physiatrist appointment in two weeks, and a neurologist is next on the list.

                  We don't have the fawns, but we do have little baby lizards - they're pretty cute!

                  Has anyone noticed the boom in the membership on the forums here lately? Amazing. It's getting hard to remember everyone!

                  Ta for now, take care, be well, all. Jackie

                  _____________
                  Tough times don't last - tough people do.
                  _____________

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                    Monday evening...

                    and I'm taking a break from packing and organizing. I'm flying out tomorrow for Atlanta, to be officially trained and sworn in as an AmeriCorps/Vista worker! (Honest to God, there's an oath!) I'll be gone until Saturday, so this should be interesting. The paperwork about the training session said things like, "Bring a sweater because you'll be inside in AC all day long." "This is not a vacation; don't expect much free time." "You can not leave early, so don't even ask us." [img]/forum/images/smilies/eek.gif[/img] Does this sound like a Federal Government party or what??

                    I wonder if they'll make us sing Kumbaya...

                    I'll let you know how it went when I get back...
                    Vicky
                    ____________________________
                    "God warns us not to love any earthly thing above Himself, and yet He sets in a mother's heart such a fierce passion for her babes that I do not comprehend how He can test us so."
                    ~Geraldine Brooks, "Year of Wonders"


                    "Be kind...for everyone you meet is fighting a great battle."
                    ~Philo of Alexandria

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                      Summer is winding to an end! Monday is the first day of school and my 5 year old will be heading off to Kindergarten. To add to this special event he lost his front tooth last week. He has a crazy looking grin and an attitude to go with it!
                      My 5th grader is terrified to return and I am certain Monday will be full of tears. The 5th grade team read the kids the riot act at the end of the year and he has spent the summer in tears as well as fear. School does not come easy for him so this is very disheartening to watch. He is wild about his new school supplies (has had them organized for weeks) but does not want to go to class.

                      I sit back in awe that the boys are now so grown up. Seems like yesterday that my youngest was born and now Dad will be taking him to class on Monday and spending the first day with him (only an hour). My 5th grade is in his last yeaar of elementary school and then on to middle school. Yikes! Add to that the oldest boy is in his senior year and our daughter is now out of school. Mom is feeling a bit lost.
                      We are closing out the summer with trips to the pool, laundry, packing backpack and deciding on clothes for next week.
                      What about other? This thread has been a bit quiet.

                      "Don't worry about the world coming to an end today.
                      It's already tomorrow in Australia!"----- Charles Schultz

                      Every day I wake up is a good one

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                        This is Sally not Charles. I'm not trying to be incognito, I just haven't taken the time to register myself. Besides which, I have so many user ids and passwords from work that I try to minimize whenever possible.

                        I was just browsing, found some great articles and emailed them to Charlie, and stumbled onto Kate's Journal. Kate will know of course but for all you posters, I wanted you to know that I have had the absolute honor and joy of having Kate and her family stay at our house the night before last. Her and her family are everything you'd imagine them to be and more.

                        We are so happy you took the time to stop and of course, grateful for the inspiration and hope that Bruce's recovery has and will bring us when Charlie gets to see the video you made of Bruce walking.

                        Like so many probably reading this now, Charlie and Bruce have taken their rehabilitation pretty much into their own hands. And from what I've seen, it's definately paying off.

                        So, without writing a book I'll say, it was such a joy and pleasure to meet Kate and her family and now consider myself with new, dear friends. And as for Bruce and Charlie, I am so proud of you for suffering through excruciating pain and personal sacrifice beyond comprehension. I don't think I could've done a fraction of what either of you have.

                        Charlie will be home from UT in two days. My brother and brother-in-law are in the design stage already for his weight suspension system over the treadmill in the garage. Seeing Bruce reduced absolutely any shadow of a doubt in my mind that he can do this.

                        The article I mentioned earlier was about a study where 79% of the people doing tread mill therapy were successful at either walking or substantially increasing their mobility skills. Only 1 person was not helped by just 22 weeks of therapy.

                        It will be wonderful to have Charlie home again after 6 months. I am so grateful for all of the recovery Charlie has experienced in the past 14 months. He seems so much happier with himself and I'm so happy to be here to help him with as much and far as he wants to try to go.

                        So much for not writing a book.

                        TTFN

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                          Sally, that was massively sweet; thanks for the kind words, and thanks again for the hospitality.

                          For all of you journal-followers, know that this woman is amazing . . . after working a full day, driving an hour-long-each-way commute, coping with a busy--and adorable--toddler, she welcomed the four of us into her house, fed us an enormous dinner, gave our kids her son's bedroom, gave US her own bedroom, talked for hours, got up and made us cinnamon rolls, talked some more, then went to work (late!) and left us to let ourselves out and be on our way.

                          Before we left, the girls made drawings for Nevada . . . Emily's was a picture of our house with stick figures of our two families standing in front together. Charles looks very tall. [img]/forum/images/smilies/smile.gif[/img] We're all looking forward to that visit!

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                            Nice to hear people are getting on with living wonderful, productive, adventurous lives!

                            _____________
                            Tough times don't last - tough people do.
                            _____________

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                              Hey everyone~

                              Back in town, ready to get back to work! The VISTA training in Atlanta was quite an experience. I met some wonderful, dedicated people...all ages, religions, races...and the number of young twentysomethings that were there, ready to go out into poor communities and try and make a difference in the world was truly inspiring. They kept us busy from 7 am until 8 pm every day, but it was interesting to come together with so many people and hear about their projects. We all are scheduled to get together again in October to do another training session.

                              I can hear a rumbling moan in the mountains here as all the kids get ready to go back to school; I guess summer is officially over?? [img]/forum/images/smilies/frown.gif[/img]

                              Vicky
                              ____________________________
                              "God warns us not to love any earthly thing above Himself, and yet He sets in a mother's heart such a fierce passion for her babes that I do not comprehend how He can test us so."
                              ~Geraldine Brooks, "Year of Wonders"


                              "Be kind...for everyone you meet is fighting a great battle."
                              ~Philo of Alexandria

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                                Wait, I forgot!! I guess I'm no longer a caregiver, as Brianna did a GREAT job here without me!! Well, she didn't do any laundry, or really cook anything, but I don't think that has anything to do with her injury [img]/forum/images/smilies/wink.gif[/img]
                                She's ready to live on her own...and bring her laundry home on the weekends, apparently...
                                ____________________________
                                "God warns us not to love any earthly thing above Himself, and yet He sets in a mother's heart such a fierce passion for her babes that I do not comprehend how He can test us so."
                                ~Geraldine Brooks, "Year of Wonders"


                                "Be kind...for everyone you meet is fighting a great battle."
                                ~Philo of Alexandria

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