A place for healing, helping and advice for those in need.
This topic is the inspiration of fred williams, who will be along soon to explain a bit more.
Thanks to Marye and the powers that be for allowing this forum to run. It is my hope that some can benefit from it. Ok, I'll introduce myself, say a few words and then get into what this forum site is about. I'm Fred and a recent cancer survivor. My battle with cancer was long and hard. I'm sure there are lots of folks that have had something bad happen to them that they had no control over. Coincidently, I was diagnosed and had surgery at about the same time Hurricane Katrina messed with hundreds of peoples lives. That being said, there are times when bad stuff happens to good people.Things that people have no control over.... However, there is hope!!!! And that is what this site is all about. WE ARE EVERYWHERE as the old bumpersticker went. So, there are people in this community that have experienced hard times, and there are people in this community that maybe able to help. This forum is for all. Jump in, tell your story: the good, the bad, the ugly and the positive, share your knowledge, offer advice. For example, I have been through a lot, and I'll post my story soon, but I've also learned from my experience and, if that knowledge can help others going through hard times, then I can give back, and so can others. A kind of Shelter from the Storm if you will. Don't limit yourselves....Post stories, pictures, poetry, art, anything that may promote help and healing for those in need. Keep on Truckin' or KOT as I like to say. Welcome to the new topic and looking forward to see where this thing goes. Thanks in advance! Fred
Keeping your compass towards the positive is invaluable when passing through tough times. In 1984 I was driving down a small country highway along the upper Sacramento river, not far from Chico, CA. We were going to do a little fishing, see some friends for a few days in Chico and then drop down to Cal Expo and see the Dead.It was a beautiful afternoon in late May, sunshine peeking through the willows along the river, big ice cream clouds floating by, no one around for miles. Then I woke up in the intensive care unit. A drunk driver using the wrong side of the road had hit us head-on. Someone riding a bicycle just happened upon that stretch of road, come across the accident and then rode to a farm house and called it in. This was still in time before cell phones. My passenger was OK but passed out or knocked out. I was very badly injured and in the process of bleeding to death. The two in the other car were going fast as well. It took them some time to cut me out of the truck and by the time I got to the hospital I was nearly gone. I had an out of body experience in the emergency room, which is a whole other story. I had many broken bones, numerous other injuries and went through nine surgeries in three weeks. Then there was a long period of rehab, learning to walk and, at age 26, getting used to a new body. During those months I watched a lot of comedy. I must have seen "The Holy Grail" twenty times! Hung out as much as possible with friends and family who loved me, even though my mouth was wired shut for a couple of months and I couldn't talk. And always stayed on the positive. These days I get around pretty good, though I am missing a knee cap, teeth and most things don't bend like they should. It is so crucial not to waste precious energy on self-pity or bad thoughts towards others when one is healing. I am sure I never could have made it otherwise, and boy are my kids glad I did :) Peace
much food for thought there. And glad you're still with us!
I suffer from a crippling form of MS, have done now since 2001. Been a real rough road. When I had my first attack, it hit my motor function part of my brain, which left me in ICU for 4 months, because losing motor function skills involves just about everything yopu can imagine. All your moving parts, eye focusing, dinking , eating , talking, walking, and so forth. Now I have had some great people help and support me along the road to semi- recovery, including all my family, especially my folks, my wife, my 3 teenage daughters. Some days losing alot of my freedom of mobility gets me down, or the inabilty to kkep the complex web of my thoughts in some sort of coherent order. I suffer from high fatigue, just because I have to concentrate hard to do most things, but I refuse to go down without a fight. Does anyone else suffer from this condition? Which manifests itself in Manic Depressive bouts as well as a by-product? Any ideas to help me or others that suffer from it? RFrom the constant pain? etc etc. I keep myself as positive as I can, and I can say three things that helped me return from a comatose like state ( not being to eat,drink, walk, talk ) One is listening to endless hours of Grateful Dead ( Dreaming I am back at the Frost or other places, Twirling in the back, grinning and laughing my fool heart away), and a new band called Radiohead ( rather complex music), and learning all about Classical Music, through hours of listening to that as well. It kept my brain thinking at a fast rate, which aided in my recovery. But like I said, it is coping with the pain now that I need advice about, because exercise is difficult or fleeting, my diet has always been balanced. I am on massive doses of nerve inhibitors, but I am loking for anyting else that might help, especially from the Professional Alternative Medical people, or Traitional Western MEdical People. Thanks for your time in reading this cheers,
Can't imagine what you are going through there, but glad the GOGD helps you a little. Can't answer your questions either friend but I really hope someone somewhere out there can! Feel for you and send you all good wishes. Just posting to say that and keep you top of the recent posts list :-)
My heart goes out to you. May you be granted much inner peace and strength.Hal If the doors of perception were cleansed, everything would appear to man as it is, infinite. William Blake
pain-begone beams headed your way, and I wish I could think of something more useful.
Our story coincidently begins with hurricane Katrina as well. We were gassin' up our Uhaul as the first bands of rain were coming in the Mobile area. We were moving up to North Carolina so we could have our son up here. I was interested in going to graduate school so that I could change my career to better suit my family situation. We moved to Brevard, NC and lived there for a year while we sold our place in Mobile and looked for a house in the Western North Carolina area. Our future was still kind of shaky, we were taking a leap of faith big time, still are really. We didn't know where we would end up, all we knew was that we didn't want to end up stuck inside of Mobile. It was a long year. We had a baby and I spent nearly seven months at sea. We had debts to catch up on and a down payment to save. We were really up against it, financially we were about as organized and calculated as you would expect from a couple of dead heads in lower Alabama. It was hard, especially with Marjie at home alone with the new baby and all, but we made it through. Just as soon as we got comfortable in Brevard, we moved a couple hours away to Lenoir. We could afford a house, garage, log cabin and eight acres for what our tiny house in mid-town Mobile cost. It was a triumphant victory for our family after months and miles and some of the biggest idiot real estate agents you could possible imagine. I wish I had time to tell it, just looking for real estate is a dramatic event. So anyway, we got moved to Lenoir, me Marjie, our dog Sally Rae, and our cat Ted. Finally we had landed, home, our place, our land, our future. We could afford it with what I made out at sea, and it was commuting distance from Appalachian State, my top choice for state schools here in North Carolina, mainly based on location and proximity to Asheville. We were broke, but we'd been there before, a sailor's family is used to the feast or famine lifestyle. All we needed was a sea trip or two and that would be that. I got on a ship right after the move, once again leaving Mariie alone in a new town. I was exhausted, I was beat. I was totally motivated to do my job, work my overtime, and ball that jack all the way home to my family for good. I had a heat stroke the first day. I had been sailing for some time by that point. I had worked all over the world under all kinds of conditions. That day in Houston I felt my mortality for the first time. I felt like I was going to die. The next morning I woke up in the hospital and the ship was gone...and we were broke. I took the next ship I could get. A new ship for the company, the "Harriette" was supposed to be this big piece of shit and nobody wanted the job. I was a second engineer, but I took a third's job just so I could get paid. It was a food run going to Durban, SA and Mombasa, Kenya. All I heard was long trip, lots of overtime. That was all I needed. Tunnel vision, get ready for the trip...get the place squared away, do something about the trash....the dog and cat......and what about the skunk? No time now, gotta go, I love you guys, and I'm off and that was that. The Harriette was a piece of shit, but the kind that makes close friends and good shipmates. I began to think for the first time that I might have found a ship I could call home. Finally a ship I could go back to before I was broke, and make and save and maybe go to school... but mainly take care of my family. I was on the ship a month, a week at the dock while we fucked around the engine room and loaded cargo, and three weeks down in the middle of the south Atlantic. I was going down for the mid watch, that's the midnight to four in the morning. The time change had created what Marjie and I call the email vortex, and so I was checking my mail on my way down because I expected a new message. That was it, that was the one. What mammogram? You remember...Oh, yea, that's right, my mom had to come and watch Jack and....Oh my god. The first was this cool cat from Florida by way of Boston named Anthony. He was a constant and consistant smoker. He and I knew each other pretty well by then, he knew me, he asked if I wanted him to take my watch. I said no. He just handed me his pack of smokes and a lighter and walked out. This cat was as hyper active as me, and he was quiet for the first time since we had met. So was Trent, his watch partner who I had known and fought with and made friends with and all that all on another ship. He and I were like brothers. My watch partner was always silent. He was a great guy though, and I could trust him to take care of all our routine shit while I sat in the machine shop smoking cigarettes and eating Klondike bars out of the galley. Coffee, devil coffee....engine room coffee....up all night.....maybe the next night too...three more weeks to Durban and I got off the ship. By the time I made it home Marjie had had her lumpectomy and they were getting her ready for the port. It would be alright. We could borrow some money and get back on track. I would catch the Harriette the next time around, relieve the second this time and Anthony would be going chief. Not to mention that I was friends with the chief mate from yet another ship and he would be going captain. Great ship....good guys.....lots of overtime.... no problem.... Then chemo. We woke up that morning (Thursday morning) almost as usual. Dead Air and the Wednesday night Jar of Jam on WNCW had kept us up late, so the morning was foggy; foggy but not hung over. Jack got us out of bed with his cooing, and that was that. Omlettes, toast, coffee, and all the usual morning treatments. I stayed as high as possible so that I would be able to rush her out the door without an ounce of frustration or aggrevation. After my peanut butter and jelly and cooking and medicine, there was no time for me to shower. Stink and stuble and out the door, what would you expect? Marjie had to run back into the house several times to find things she had forgotten and sent me in once for things she had taken in during her searches. Finally she sent me back in to pack a bowl. We drove fast and listened to one of our favorite Dark Star's all the way. We got there late, but we still had to finish the song and our discussion about Pan before going in. We were stoned, we were armed against the death and sadness inside. My small book bag held my various books and notebooks and it hung on my shoulder. I carried in one hand Marjie's purse and her trapper keeper, and in the other hand her books, notebooks, and drugs and whatnot. It was reminiscent of the good ole days of gathering up all our favorite toys and bubbles and music and cigarettes and settling down for twelve hours or so of laughing and deep conversation. We were high and in no way ready for the insurance dilemma that greeted us at the will call. She could have the treatment but not some follow-up shot to help her blood count. they could do some 3 shot deal but it wasn't as good. We could give her the shot ourselves. What the fuck? Doesn't insurance cover that? "Just give it to her and fucking bill us. I'd rather owe you guys than some of the goombas I've owed for drugs." Marjie squeezed my arm. "I'm sorry." I said, ""that union insurance is bullshit." She seemed to understand. We all agreed that I should be quiet. The lady seemed to be on our side. As usual we were the dirty hippies stuck out on the road with cars whizzing by and not a ride in sight. Despite my outburst things worked out. Our preparation would pay off and treatements would begin on time. I might make my ship and everything will be okay. The Red Devil is the worst.......... As the nurse was busily disconnecting the tubes and pulling out needles I realized that I had seen all of it one time before in a dream..... This was only the beginning. Over the course of her treatments Marjie's port malfunctioned and she was put on this heinous blood medicine to keep clots from forming around it. She was passed down from one doctor to another without she or the other doctor being told. A P.A. that worked there suggested that she skip the white blood cell shot deal after her second treatment. We spent a week in the hospital after that. TIP for newcomers to cancer, check all your local hospital's billing policies before you go to one. Despite the fact that everyone told us that she would not get it Marjie ended up developing lymph edema in her right arm. All the while I was putting off sea trips and planning this and borrowing that and now suddenly here we are hours from any family and broke and I can't go back to sea. We sold our house. We are selling our stuff. We have been bouncing around now and moving, but we finally ended up in a great town. We don't know what we are going to do. I am still planning to go to grad school, we just have a couple more eyes to cross and a couple more tees to dot before that is feasible. Our son is two now, and loves living in town. He starts daycare next week, and I truly feel like that will make all the difference in making things happen for us. I love him, but damn if I don't wanna take a piss once in a while without pushing shoving or holding twenty five pounds in one arm in some isometric exercise. Our futures are still blowing in the wind. We don't know what we are going to do. I've applied for jobs, and yada yada yada. I can say this, I've been my son's daddy now for all last year, a big part of his life, a rock for him, a buddy and a playmate....a father. I wouldn't have done that otherwise....I would have been off making money, no doubt about it. Marjie is getting better. Her hair is growing back. Our family is suspicious of us, we are poor and unpopular. Fallings out with everyone, and mostly over money. So what....who cares.......my son is happy, Marjie is beautiful as ever and smiles when I look at her over my glasses....we've been humbled and we know it...and to be honest we are happy for it.....and the music never stops.
Your words and story are both inspired and inspiring Hozomeen! Good wishes to you and your loved ones....ever thought of being a writer?
What a story Hozomeen! Your post is absolutely perfectly written, and has me sniffling over my Sunday morning coffee. Thank you soo much for sharing those beautiful words to remind us that no matter what; when there is love, there is hope. Needed that reminder very much, so thank you again!!!!!!********************************** Don't part with your illusions. When they are gone, you will still exist, but you have ceased to live. Samuel Clemens
Marjie is a lucky lady to have you by her side! Stay strong for your son and Marjie they need you. Healing vibes to Marjie. Peace. Gigi Wake up to find out that you are the eyes of the world, the heart has it's beaches, it's homeland and thoughts of it's own. Wake now, discover that you are the song that the mornin' brings, But the heart has it's seasons, it's evenin's and songs of it's own.
Thanks a bunch ya'll. I really do appreciate it. I have thought of becoming a writer. In fact, it is a dilemma I have been pondering a good bit lately. I could go into another engineering field, which would be the "smart" thing to do I guess, but then again writing is like a compulsion for me, something that just comes out of me. I was thinking of going into photojournalism, but I don't know that much about it or more importantly whether or not there would be an audience for it if I did. Thanks again for your nice comments, it makes me feel good about pondering something that feels so irresponsible. I laugh at myself for feeling that too, writing stories and poetry was once a homework assignment, something I was supposed to be doing. I want to do that again I guess. If you guys want to read more here are a couple of blogs I am getting started. One is poetry and short stories and the other is a journal I am keeping for my son. The photo galleries are some B&W photography I have posted. More of that to come as well. One is a trip I made to Bangladesh, the other is our honeymooon. See if you can guess which is which. hozomeen.wordpress.com somedogs.wordpress.com http://hozomeen.myjalbum.net/Bangladesh/ http://hozomeen.myjalbum.net/Coventry/
Hi, this is Marjie! Thank you all for so many positive vibes--they brought me to tears. I am so glad that other people besides myself get to read my husband's writing. We have hundreds upon hundreds of pages of emails that we sent each other while he was out at sea. What an incredible blessing to be the recipient of such beauty that should be shared as openly as he writes. The story below is one that I wrote just a few days ago. Since I posted that on my blog, things have turned around immensely. I knew it would, but some days just feel desperate after a long and arduous 2007. Thanks again for all of your kind comments. Title :$1.14 February 27, 2008 Today, February 27, 2008, my sweet family of three only has $1.14 to our name. We don’t even have change to roll, we can’t get our prescriptions filled (even for our 2 yr. old son) and we don’t even have enough gas to drive to a bigger city where charity organizations can help us. Exactly one year ago on February 27, 2007, I found out that I had breast cancer, and on top of that, I had to email the news to my husband who was in the middle of some far away ocean. I couldn't even call him which mortified me. Please God be with him as he reads my ominous message. Please let him feel my immense love thousands of miles away. That is all I could think about after I got the news while sitting alone in a cold waiting room (the news from a surgeon that seemed to care less, he just told me to look up breast cancer on the internet, and ushered me out the door as I confusingly made the decision to have a lumpectomy instead of a mastectomy). One whole year has passed and we are still suffering the devastating effects from that one diagnosis. It has changed us in ways that we are only beginning to understand. We are tougher than we’ve ever been, but that doesn’t come easy. It comes from being beat up and bruised and sick and mentally taxed beyond compare. Now a year later, this is where we are: we no longer have health insurance, my husband has to hold his boots together with goo, cork and screws and still cannot work out at sea because of the permanent disabilities I now have, we eat only because we qualify for food stamps (believe me, we could have never even imagined being in this position), our clothes are literally falling apart and the best thing going for us is blind faith, the deep love and closeness we share, and the decision that we will one day help other families like us that have and will go through the unimaginable effects from one simple medical diagnosis. We are survivors, but please, one dollar and fourteen cents a year later. That sort of sounds like one of those stories of family devastation that you find in Reader’s Digest. We just want to get on with our lives. We’ve had to sell our house, move to a new town where the rent is cheap, and worry that one of the bald tires on our car (bald from endless days of commuting to the closest city that can administer “the red devil” and other such chemotherapy drugs/four surgeries/six and 1/2 weeks of daily radiation) will blow—potentially hurting our toddler that means the world and more to us. The love we share is indeed the most amazing thing I’ve ever experienced in my lifetime, but we really need a break, we really need help recovering from this, we plead for kindness and understanding as we try to get on our feet and beyond.
I hear you Sister! Similar financial mudhole, different details. Like when your husband was at sea-am alone in another place so that my children can have a life. Peace and love to you and your family.********************************** Don't part with your illusions. When they are gone, you will still exist, but you have ceased to live. Samuel Clemens
I know we got some horror story`s. but wow man , we hope the best for you and your family .. Life has it`s ups and downs , sometimes more downs then ups, but the good times really do out weigh the bad times .. am glad you got to be a daddy to your son .. that time is eriplacable ,,.. oh I agree with cosmicbadger , have you ever thought about writing for a living ? if you write an autobiography i`ll buy it for sure.. Peace , Happiness and best wishes to you and yours !!
Thanks everybody so much for your comments. It goes a long way. We wanted to share a tune with you guys, one of our family favorites. Go to the following link: http://panicstream.net/streams/jerry_garcia_band/1974-09-01/player.html advance to song number 6 the whole show is good...number 4 is also a little different and interesting....number 3 is a good siting in limbo Thanks again for the good vibes and I hope you enjoy......
you oughta be ashamed of yourself, putting an add in here in the manner that you did
Deadnet just hacked me out of the ice from the early 70's so tell me.......is spam a bummer?....Is it solicitious?Some of these posts are like trying to read "desolation row".....I cant seem to finish reading them......thx
the spam in question is probably gone. It sneaks in there, but it doesn't last. We gotcher porn spam, yer designer handbag spam, yer viagra spam, yer travel spam, you get the idea.
You know better than I know "them".........thx marye...really!.Like I said Im primitive.Some of the long posts are just fine to read.Its hard for me to see spam I guess.People have stories and wanna tell em here.....
it's not people's stories we're talking about. It's the blatant and very obviously non-Deadhead solicitation to buy many and usually sleazy wares.
Slam bam thank you uncle Sam
I'm radar guided vermin for asking........[head hanging down]
"The latest and greatest spam detecting software program....Coming soon to computers everywhere!!!!
...with a few bucks. He definitely needs shelter from the storm along with his son and dog cuz the bank repo'd his house. Johnman, as most of you know, is the very affectionate cookie monster whose been on this site foerver. You can PM him or me for the address to send to. Jes' a humble request, Ever'body got their troubles too.
which provides an occasion to reiterate that sending good thoughts and a few bux in johnman's direction if you can is a fine thing. Cookies also. And folks, with the holidays upon us, the Shelter From the Storm topic is bound to be kinda active, so, have at it...