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Food for the Soul
Stories
Sharing the March on Washington
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Three weeks ago today…Wow seems like a long time and then moments of thoughts it seems like yesterday, I awoke in a beautiful hotel room filled with anticipation of the day unfolding. No expectations, just the joy of being able to meet and be with other people that had the same virus and similar situations I did. Patty, and I shared this beautiful room. Corner room, Fourth Floor and windows pointing to the south and east. Could See the National Christian Community Church. The Bronze statue of Thomas? Whomever the Circle was named after and many other magnificent buildings. Our journey to DC had already been filled with much excitement and wonder (that is a post all in itself)…LOL. As we got our day started, coffee, discussion of the March itself, the Forum …(oh yes there wasn’t a day go by that we did not think and send all here good thoughts) and yes Patty was so looking forward to being at the Memorial Picnic in Janis Memory, we talked of all these things. We had T-shirts that had Janis & Friends on the back with the url for our Webpage also had some business cards made up with the same on it. We dressed went downstairs, met up with some others that were in the March and thus began our morning. We arrived on time to the destination. The Base of the Capitol of the United States of America and what a site that was.
Once all had gathered and introductions made, there was also a NURSES Rally taking place across the street some of them came over and addressed our crowd. without them, we would not have the health care we do. Was truly appreciated.
Then the March began…11 blocks, with police escort and all. Was truly phenomenal. Some had banners, some carried signs, and some of us did well just to walk. Others were handing out papers with stats of HCV on them and buttons and caps as well.
WE all continued until we reached the FREEDOM PLAZA…Martin Luther King also stood at that very spot declaring the dreams and visions he had had. The Speakers were phenomenal. (will name them separately in another post with their websites and addys) The passerby’s heard some great messages. Although we were small in number .135 . The messages we gave were powerful. UNITED WE STAND DIVIDED WE FALL. How true that has become for me these last 3 weeks.
I was honored to have a picture of our Janis and Cookie in each pocket and in my heart many who are awaiting livers….due to the ravaging of HCV. Many that could not make the walk were awaiting us at the Plaza, which was a testimony within itself.
Much still needs to be done if we are to be heard. The stats have been given and many are horrific if they be true. WE need to ban together, leaving all differences and make politicians, and the health care system hear that WE the PEOPLE have something to say.
Again, it was and still is an experience that I will have embedded within my heart for a very long time. That night another huge honor was bestowed upon me. We had dinner with Jeff and Shari(Crymealiver), and then Linda, Patty, Brite/ED, and I all went to the Washington Monument, saw the reflecting pool, Lincoln’s Memorial and the Vietnam Wall. Was a truly beautiful night. Full moon and what history and a sense of patriotism.
Next year am in hopes that many many more of us will start NOW making plans to be there.
Thank you all so much for letting me share just a fraction of the experience that took place in my life 3 weeks ago today. Blessings and Goodness for us all. Always, Karen
From Linda I too am home from the March on DC. Am very tired, but just was thrilled to have been a part of what I hope will be an annual event. We were small in numbers but so strong in heart. We were well received in DC. We had political representation, the Vets were there, Dr. Darcy and Dr. Cecil spoke. Their statistics on federal funding brought me to tears in how little we received to HIV victims. The March was 2 miles long and we had a police escort. Our little Dee worked her little heart and legs off distributing buttons to anyone that would take them.. It was so sad to see how many people back away from us like we had the plague and could maybe "catch what we had". All in all, I feel it was a wonderful start. Karen spoke and I feel complelled to tell the names including our dear Janis, that have been lost to hep c. Such dear friends that we will always miss, but we must never feel that it was for nothing. We must carry the message and let people know. My most memorable part was when Brite (Ed) gave his speech. His is an advocate for the veterans. He traveled all the way from Arizona by himself and was not in good health. That man traveled by 2 buses and 3 trains to get to the camp ground and then we found him just wondering around. THen I met my angels, Patty and Karen. :) I asked Brite how he does it, and so profoundly stated something that will keep me going for a long time to come. Britestar stated, "I can walk as far as you can, and then I will go 2 steps further" :) I feel blessed to have been a part, and pray that everyone that can, go next year. Love to you all and see you in chat. LindaA4
Here are the first Pictures of the
March from Bill Atwell From: hcvaware@hepatitiscaware.org (Hepatitis C Aware) I want to thank you
for the hard work for the march Sunday.
Tapes From March on DC If you would like a copy of the speakers tape from the Hepatitis C's
March on DC, please do the following. Send (via email or snail mail)
your name, address including zip code to britestr@hotmail.com or Thank you; http://hcvets.com/forum_public/hma/2002_video_tapes.htm
August 1,2000 The Day My Life Changed This lovely story is written by our friend Sando. She has shared her last moments with her beloved John. Today is August 1, 2000-last year on this date was when I took John to the Gardner House (Hospice). I never thought it was going to be the last time he was ever in our home we had shared for the last 13 years. But it was. August 1, 2000-Myself and Carrie (daughter) waited till around 9:00 pm to take John because of the heat. The nurse had come earlier because John was having a really bad day. She told me that when people are dying they sometimes become scared of the ones they love most. And John had become afraid of everything around him, even me. The night before was the night I had let me realize that John was dying. I knew it but I was the Queen of Denial, if I didn't want something to happen I didn't let it happen. And I didn't want John to die so he wasn't dying. But I was lying in bed that night and John was sleeping so deep beside me-and so different a sleep. John could never go to sleep till I was in bed and if I got out of bed in the night he was awake in a flash-asking what was wrong! But as I was listening to him sleep I think I just had no more fight left. I started crying and I didn't want to wake him so I got up and went to the living room. I cried so hard and loud. It all hit me - everything! I begged God to let him come out here and ask me what was wrong. Then I would know he was ok. But I sat there all night crying, knowing it was true. I never felt more alone in my whole life. It was true - John was dying - he was leaving me and I could do nothing to stop it! So that evening we took him to this house that looked like all the other houses in the area. But when we arrived a very nice women came out with a wheelchair and from that point on John was treated like a KING! And he loved every minute of it. Haaa I on the other hand was asked to follow the doctor and do the paperwork. I had done so much paper work since this all started. I think I just did it out of habit. First thing the doctor said when we sat down was "Are you ready for this?" I honestly didn't know what he meant. I said ready for what? His reply was like a bolt of lighting hitting me! Are you ready to let go of John and let him die? I was a mess when Carrie came in the room. I only said nooooooooo I am not ready! She just held me and we cried till the tears were gone. Hospice believes in being up front and telling you like it is. At times this was very hard but I am also glad they were this way. We finished the paperwork and I went back to where John would spent his final days. I was a very beautiful room with everything like home except the bed. I got him settled. He was looking at me with the look I hated. The please don't leave me look... Carrie laid in bed with him for a bit and then I told him I had to get home. Carrie was expecting a baby and she was so tired. I was past being tired, I think I was going through the motions of the day. He said what time will you be here tomorrow? I told him as soon as I could. I hated leaving him more than anything. So I got him tucked in and after the 10th thing he remembered I told him I loved him and Goodnight.
My heart broke for him, he told me I just wanted to go
to the I made a joke of it with John so he wouldn’t feel like
a baby needing My mom was coming in town today, she did every August
and she was better at denial than me-matter of fact she taught me the
ropes! I knew she I had told her about not wanting to leave John alone
anymore and she Later that day the social worker came and asked if we
could talk outside, so I knew something was up! John was put out cuz she
wouldn’t talk She said a lot of stuff I didn’t understand, but what
it came down to Hospice is a place where people go to die-plan and
simple! John was My mind is racing trying to think-ok I live in a
upstairs apartment that Carrie and I had already been doing shifts at home
with John before this Sue said it would be a few days before anything was
done either way. |
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| August ??, 1999-For 2 days I was
overwhelmed with trying to decide what was gonna happen. But the 3rd day
it was decided for me-John was still dying and they were gonna keep him.
Pretty sad that I was relieved to hear this huh? But there was no way in
Hell john was gonna go to a nursing home as long as I was alive and
walking this earth.
Anyway the days were just all one day now-John was pretty out of it. John needed a shower and I knew he couldn't do it alone and I was the only one he would allow to help him. I have to tell you I never laughed as hard as we did that day in that shower. I came out wetter than he did. John wasn't finding it as funny! He thought I was gonna let him fall, and I bet it wasn't funny at all. I just had to laugh-or I would have cried my eyes out. I knew that was our last shower we would ever take together. I told John at one point - Baby, I can remember our shower together be a lot more fun-can't you? Oh, he gave me a look-a good look! **smilin** Everyday we lost a little more of John. He was being very difficult! He was still trying to get out of bed on his own and still falling. My poor baby was black and blue from head to toe. And he just couldn't understand. He even told me once - I think they are beating me! I assured him they weren't. He smiles and said I know. I was sleeping in a recliner next to John and at night I would wake up to see John trying to get his leg over the rail or stuck or he had already fallin. Sometimes out of pure frustration I would tell him FINE YOU WANNA FALL - FALL! I AM GOING TO SLEEP! I would close my eyes for a second and then peek. He would be tryin to get back under the cover. **smilin** I always thought he was so cute.. :) John would wake me in the night and tell me he had to go to the bathroom, which was right across the hall. But getting him there wasn't easy cuz he was very unsteady. He didn't think so-but he was. We would get all the way there and he would say Man, I don't gotta go now! What could I do-just love him. I slept close enough so we could hold hands, sometimes I would try to get in bed with him. But he was to confused to remember what cuddling was, and I was just crowding him. Except the night before he died-I slept with him the last time. God did it feel good too! I just reread what I wrote and I am making no sense-I am trying to remember but I can't! I think I will just share things I know from here on. I do thank God for giving me the time he did for John and I to had together. Many times I remember thinking I wished John was just hit by a car or something quick. But I am so glad it happened the way it did. There was time to love him, hold him, tell him so many things I would have never told him. I was so lucky to have John in my life. We had 23 years-I would have liked 23 more but I can't! John always told me when we got old and it was just us two, he wanted to sit and comb my hair. How funny I remember that. We put so many things off, saying we have time-Our 20th anniversary he wanted to do something really special, and I said no let's wait till our 25th. Hmmmmmmmm Never wait! I have been thinking so much lately about where I was and where I am now. And all the wonderful friends I have found here who have been so kind to me, and supported me through some very bad times. So I have decided I would share something very special with you all. John’s final days at a beautiful Hospice House were so great. And they were there for me too. Helping me with each step, picking me up when I fell. At the times I didn’t know what to do they were there to take my hand and guide me. They are truly Angels on Earth. And I can never thank them enough. The one thing through this all I am glad to have is the memories... And I want to share one with you. It is the time starting when they came in and told me John had a few (2-4) hour left to live: It was like a bell ringing in my head-I knew he was dying but when they put a time on it I freaked! I remember thinking, WHAT DO I DO NOW? This was about 9:00 am on August 12th and I was alone with John, I shut the door and sat in the chair that for the last 10 days had been my bed. John had stopped talking to me with his voice, but we still knew what was on each others minds by looking into each others eyes. I still knew if he needed a drink, or was uncomfortable in his bed. We had always knew what the other was thinking, me more than John. John used to say I could read his mind. We could be in the same room and I would answer a question, before he asked. It was scary sometimes. I sat there not really able to do anything. Then I sat
on the sit of the bed with John and looked at him waiting for something,
anything. We were both so scared, I remember putting my finger through
his hair and he smiled at me. His smile was more like a grin, but I
noticed his lips were so chapped, so I called the nurse to do something.
And then I saw that he needed to have his teeth brushed. So I tried to
brush his teeth but he keep biting the toothbrush and wouldn’t let me
have it. God I was laughing so hard. And in his eyes he was too. My mom had been there from Kansas City, but had left that morning for home and was going to fly back in 2 days. So I called her first and she was only about 12 hours outside Phoenix, so she turned and started back. Then I called my sweet daughter Carrie, she was pregnant at the time with out first grandchild and wanted so much to be able to tell John what she was having. Her doctor had done 3 ultra- sounds and each one it could not be seen. She had another one scheduled for the next day. But I told her she needed to come to Hospice and even though she knew why she asked. I just told her to come and nothing else needed to be said. I think by now my very dear friend Donna who had been there for me through much of this had shown up and I told her what was going on. She was scheduled to leave the next day for a trip to some far off Country, and I know she was going through hell not wanting to leave me, but it was something that she had planned and paid for over a year before. I had a talk with John some days before telling him about Donna leaving and told him that she was my strength and I needed her here for one or the other (meaning his death or funeral). And I think he knew that cause he died about 3 hours before she was due at the airport. I will never be sure what she would have done had it not happened the way it did. Some say she would not have gone. I am glad she didn’t have to make that choice. Now I had to call my son, who through all of this
closed his eyes and everything was ok. He had not dealt with this in any
form since it started. The many times John was in the hospital he
refused to go see him. A few times I made him go, but he would just roam
the hospital floors or go outside with us. He said he didn’t like seeing
his dad that way. And when John would come home, Josh who always stayed
inside because of the heat, was never to be seen. He just thought maybe
if he I even had another friend bring Apollo, our dog up.
And that was a treat in itself. He is a very high strung dog anyway and
he hadn’t seen John in almost 2 weeks. They were best buds. Everywhere
John went he went, so he was very excited. When he came in the room and
saw John, who was in bed he ran to him and licked his face. John
scrunched his face up and man was he mad. I felt sorry for Apollo but
John hated it when he did that even now. Then they took Apollo home. And
to this day he still sit outside at the edge of the grass waiting for
his daddy to Well, John also has another daughter from a previous marriage and she had already planned flying in the next day. So I called and told her what was going on. I told her I didn’t think she was going to make it. She talk to her husband and said she was going to come anyway. Which was fine. Well Carrie and Her boyfriend showed up and I told her what was told home. She had grown up very much in the last few months. A month before she chose to quit her job and stay home with her dad through the day so I could still work. And she would go home after I came home. She had been pretty wild until then, but seem to change overnight. Many times she was the only one that could get John to eat. She always had a way with him and could get him to do just about anything she wanted. One day when I got home she looked really tired and with her being pregnant I was worried. I asked her if everything was ok and she said she I was laying with daddy and he looked at me, I said daddy are you leaving us? She said he took my head and laid it on the pillow and said shhhhh watch the movie. She said before he always said no, I will never leave you guys. Carrie seemed never to be here long together. I now
know we could not stand to watch each other hurt. But this time we were
here together and had to stay. But we kinda did the same thing when I
was in the room she would go outside or Then Josh showed up. I remember looking at him and thinking how much he had grown and I had not even notice. I had been so busy with John the last 2-3 months that I missed it. Then I took him to Johns room and outside the door I told him he had to tell his dad goodbye... He said I can’t mom! What do I say? He was gonna lose it any minute and I had to stop him. I took his shoulders and said Josh please baby, just tell him you love him and everything is ok. Just make sure you tell him you love him. He calmed down a little. My poor baby, my heart broke for him. They had put John in his chair when
we went in the room. When John saw Josh his eyes lite up and he sat up a
little and the glow in his face made Josh able to go into the room. It was
what he needed. But when Josh got over to him it was all he could do to say
dad, I love you. Before the words were out Josh was about to lose it. He was
crying, and telling me I have to get out of here! He pushed past me and to
my friend who brought him there. I looked at her and she knew it was ok to
take him home. But at least he would not have the regret that he didn’t say
goodbye. |
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A little boy was spending his Saturday
morning playing in his sandbox. He had with him his box of cars and trucks,
his plastic pail, and a shiny, red plastic shovel. In the process of
creating roads and tunnels in the soft sand, he discovered a large rock in
the middle of the sandbox.
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| This is a story written by our dear friend Millie. As you
read this story, you can not help to see the love in each written word. This
disease has changed their lives. But will never be able to touch their
faith, or love for one another.
I am married to a great man named Tom, and we have a 17 year old daughter named Ashley. I met my hubby over 20 years ago, at that time I did not know he had hep c. we got together 19 years ago. I never know what our life would be like having to deal with everything that goes with having a loved one sick and needing to learn how to deal with the sickness the rest of our life’s. Well it has not been too bad. Telling our daughter was not easy, but children know a lot more then we think! She was very good about it not totally understanding the sickness, but knowing her daddy was not well at times. It was hard but she was very good. I have talked to her, and she has missed being able to go out and play on the beach-playing ball with dad running after it! But all in all she has not missed much, Tom has always did stuff even if it hurt him to do it! I remember when he worked all night, and I would be waiting for him to come home so we could go out. Not totally understanding he was so tired he could hardly stand! I guess back then I just didn’t get it. But after all the years we have worked through this I very much understand. Back in 1990 Tom got real sick, and we were sent to see a liver specialist that put him on interferon treatment. I started off giving Tom his shots at home, after a short time I just had to hard of time giving the needles. Tom took over giving his own shots the sides were just so nasty. I can’t even remember all of them but one that comes to mind is: We went to a friend’s place for dinner, and she needed a green pepper, so Tom went to get it the store was maybe a 10 minute drive. Well he came back over an hour later with no pepper, and had no clue that he went for one! He would pay bills more then once, and had people coming and giving back money that Tom had paid. Anyways that was not the worse part of sides for Tom but things like that were going on. Well after 8 long months of the nasty interferon he was done! We prayed, thankfully that it was over, so we go back to the doctor for a check up to find out he is 1a and the treatment did not work. Well Tom being the man that he is just went back to work! It was very hard for him to stay off as long as he had. Well he did not to badly for some time still very fatigued but that’s what having hep c does. Anyway in 1998 Tom got very sick again so we made a doctors appointment to see if maybe Tom could try treatment again. Well they did a biopsy and we were told Tom was stage 4 hep c grade 4 cirrhosis Well that was something we did not even think about! What do we do know? Hmmmm Well the doctor tells us that Tom has about 2 years to go so we need to go see the transplant team. Well now we are off to the transplant team! We drive 1½ hour to get to the team just to find out we must wait to get on the list! "Boy I was so mad" They give us a list of things to watch for after and only after one of these things happen then, and only then he will get on the list. I still don’t totally understand it all but we have been waiting for one of these things to happen to get Tom on the list for a transplant. Well its been 3 years this May 6 and Tom is doing ok no nasty things have happened thank God! At first I did not know if what I was feeling was right or wrong? I was at one point praying for one thing to happen to get him on the transplant list, and at the same time not wanting to have my dear husband have any of the above happen. I was just so lost! Feeling so bad not knowing what to pray for. It’s so hard living a life with your best friend and husband and seeing him ill but feeling so helpless. I love Tom very much he is my soul mate. I know that no matter what happens he will always be in my life & in my heart. Now we just pray that the new treatments coming out have more hope for people like us. I found Delphi over 2 years ago and up until then I really believed we were the only ones dealing with this. Now I know we are not alone in this fight there are so many people dealing with sick family, friends or loved ones. I know it’s hard but if we keep the faith and just keep fighting we can beat this! I found so much love in all the family & friends here at Delphi and have lost some to this terrible disease but I feel strongly that faith will always help you. It has helped us get to this point in life and I am so thankful for this. Tom is still having his bad days and we know there are more of them to come but we are ready for what ever may come! Some days I get upset seeing him in pain with nothing I can do to help, so I take myself in to another room and hey I am not shy I have a good cry. I never thought I would say to cry is ok but it is! We need to get out what we are feeling and it’s a normal way to do it. Well as of today we take one day at a time and that’s ok with us we live our life, and deal with what we must as it comes. The best thing I can say is keep the stress down and your faith up! God bless you all Millie North Ontario, Canada
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