My Craig Coma
well gang here I am at home. Just got home this afternoon after a week long awesome trip of my life. Went everywhere, Chicago, Detroit, and Canada.
I must tell you that my dream came true.... I actually met Craig and he was so sweet to me. Just totally.
When I arrived at the theatre, my friend went to park my van, my other friend waited for her. I went ahead and went inside the theatre. They let people with disabilities inside the building early.
As soon as I went in the door, the box awesome manager who is totally cool said "are you Annette?" I said yea and she said come this way. She gave me an envelope with the special passes to meet Craig. She put us all at our seats by then. I was in the D section and could see perfectly.
She gave me directions as to what to do when the show was over....Wait till the place clears and Craig would be then come out. By then my heart was beating a mile a minute. As when Craig entered the stage for the performance.
After the show we waited. The 12 other people were already at the stage in line by a table waiting for Craig. I was the last in line and I am glad I was. Because I really got quality time with him. He is so tall. I mean tall. What made me love this guy even more is that he bent down to my level to talk. That is true understanding of disabilities. That was special.
He asked me my name. Told me that it was really nice to meet me. He asked where I was from. etc etc.
I then gave him a picture that I took out here by my house. I live in the country and it was a beautiful picture of a field with the sun shining. I titled it.. "Southern Illinos". As I explained the picture, I said that I thought that as a new American that he should have a picture of all the states in the U.S. He took it from me with his hand on my knee and told me it was beautiful and that he would cherish it.
I also gave him the story I wrote...with a fan letter...addressed in an envelope with the words "Mr. Ferguson" from a true fan. I told him a bit about the story. He promised me that he would read it. It wasn't a patronizing comment, but a true promise.
I then introduced him to my friends. He thanked them for bringing me up to Detroit to see him. He then signed my book...I was so nervous I almost forgot as my friend Annette gave it to me. The book had been stuffed with tickets, the pass, so the jacket was book marked at the beginning. He smiled and said..I didn't mean to lose your place. I smiled and said I had read it already, he smiled back.
He then bent down again and gave me a hug and kiss on the cheek. I think he wanted to earlier but was afraid of the tubes. I can tell those things.
He looked really tired but was so kind to me. It was totally amazing. He smelled of sweat and nice after shave. I melted. He is a true gentleman. As I left, he said to me..."I promise I will read your story" and then told me he was going to try and play a venue in my area sometime.
I can't explain the feeling. It was a dream come true. My list completed of life's experiences before I die.
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Part II of saga
After we left the theatre...my friend Michelle said...lets park and go to the back of the theatre where many were waiting for Craig. So we walked, rolled 3 blocks to do so. I loved it.
I sat in the back as I didn't want to take away from those trying to meet him for the first time. I just wanted to bask in the glory of his many fans.
As we were standing there, my friend Annette goes..."Look Randy (his opening act) is holding your picture and letter. I said "no way", well sure enough he was. He was standing by the car awaiting waiting for Craig to finish.
My friend Michelle went and got Randy because I wanted to say hi. He came over and talked to me for quite awhile. He showed me the picture that I had given Craig and said that he want to keep it. "He said that I am keeping it from Craig" He was kidding but quite nice. He is into photography and told me that he thought my picture was beautiful.
Randy did tell me that Craig reads everything he gets.
I know that some haven't been thrilled with Randy's act, but he too, is a sweetheart.
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I must say that my trip was a dream come true. Craig is wonderful. I loved the show, the experience, and will treasure it forever.
:D And yes, in the one picture I have posted, he does have a shirt buttoned really really low. All I could see was his chest for a moment, but mostly, his wonderful smile, beautiful eyes, and the kindness he showed me. He could of left early, he didn't talk to the others in line long. He was patient and kind to me. Just him coming "down" to my level moved me like you wouldn't believe.
Location:home
Mood: dreamy
week from hell
This has been the total week from hell. Sometimes I think we as people with disabilities in America are scrutinized for everything. We are in a system that keeps us at a lower income level, hit and miss on good health care, and the constant ordeal of finding good assistants to help us with our daily needs because professional nursing is too expensive.
On Wednesday of this week I was a victim not by my disability, but the bureaucratic system we are in. Someone anonymously reported to the state of Illinois that I was being abused, neglected. An officer from the Inspector General's Office from our state capitol burst into my house, flashed a badge and asked to interview me alone. Talk about puzzled. I just couldn't imagine who did this.
The thought of losing my attendants, my services to be able to live independently, and the thought of a nursing home scares me to death. Especially when there was no basis for these charges.
Needless to say I was really stressed. I think that night I got 2 hours sleep. I was stressed and very scared. As the days have went by I am angry. I feel like my rights as a person with a disability and a citizen were violated. Especially now that I have an idea who it was that made the call. I think it was an attendant I had to fire several years ago.
There is no recourse for me to prove it was her. But I am the victim because this shit will be in my file forever. For no reason, no basis, and I will be watched.
I have had the same attendants for years ranging from 14 to 2. Most attendants being family and friends who love me unconditionally and would do anything for me, for free. The funds have helped me spirit wise...in the sense I need help and they should get paid for the services.
Needless to say I am a fighter..so I have written a complaint letter to the Inspector General's Office with a copy of this letter to every legislator in the area. So hopefully I will get a response.
All my life I haven't trusted people easily. I have tried to over the years and have learned to a bit. But this situation leaves me trusting no one. I will be always looking behind my shoulder.
A difference a year makes, imagine 14
I had to post. I just got off the phone talking to my little brother, his birthday is tomorrow. Only he isn't so little, he will be 39 tomorrow. We had a great conversation. The best we have had in a long while. We talked about everything...family, life, our relationship when we were in college together. It was awesome.
I will always remember his birthday as it is to that date, May 4th, that I started using a ventilator on a permanent and forever basis. It is something that changed my life on a lot of levels. It will be 14 years tomorrow. A day that I thought I wasn't going to live through. I thought, my family thought I was a goner. But hey, I am still here, kickin butt but have been through many emotional stages that can't ever be explained. The thoughts, experiences, goals, and sadness can never be explained to another human who hasn't experienced it.
There are days I am glad I made that choice of a permanent ventilator or I would be dead. I remember in a deep sleep, almost coma like state, I told the doctor "do it!" and my life changed forever.
The other day I was at my pulmonologists office. We talked about it being my 14th anniversary of being on the vent. He asked me point blank...."do I ever regret my choice?" I stopped for a moment and thought about it. And no I don't regret it. Do I wish things were different? "hell yea". I would love to be more independent and not have to rely on this thing strapped to me to breathe. But I can't. I have lost my sense of self by having to have people assist me with things, loss of the ability to have a great job in what I was trained for, I was damn good at it. But I have gained life. No hospitalizations, I think clearer, and more than anything, have appreciated life. I can go outside and not worry about if I am breathing like everyone else. I am breathing and I have appreciated life more. I don't take things for granted.
I do have a bit of surviviors guilt as many of my disabled friends have died, and I am still here. Is that fair? Well only the future knows. Not me, not my friends and family, but the heavens above. I haven't been a very religious person over the years. There were days I felt cheated, but I am spiritual in my own way. I go out and look at the clouds, the creatures, and my home and realize there may be a purpose.
I asked my doctor when I was there Thursday about the risks of me going on a trip to Michigan. He looked at me seriously and said....life is a risk. If you feel good, go for it. He said that I was the least disabled person he knew. That I have a spirit for life. He mentioned he knows doctors that are hindered by their spirit which in a sense makes them disabled. That proclamation by him touched me. It made me realize that I want to take this trip...to be with my two best friends...a trip without Jim in 14 years, and to maybe see Craig Ferguson in person. It is just that for a week. I can be free if it will be my only time in this life.
Things change and I know my life will change, I am getting weaker, but I am going to live life like it was the last day on earth. Because it just might, or I might beat the odds again for the 6th time.
Happy Anniversary me...and LIFE!!!!
annette
so much for me
You know with this entry, I don't know where to even start. My thoughts are of depression, anger, and sadness that I have not experienced in a long time.
For many years, well maybe all my life, even when getting the permanent ventilator in 1994, I never really felt sorry for myself. I just accepted my disability like I always had since I was a baby. Yes, a baby. I remember the sights, the smells, and the pain of hospitals even at that age. I was taught to just go on, survive like everyone else did. We all had problems of some sort or other.
Since meeting so many wonderful and awesome people on the internet thru their blogs and conversations, I realized that live can be fun and interesting on a ventilator. You just have to have the right people with you and take risks. We all never know how much time we have.
I had friends that went to concerts, trips, and yes, even moved to another state to be free. So I thought, " I can do it to." I can take a trip. Not just sit out here in the country and be a vegetable.
The story as it is....over the past few months I have become a major fan of Craig Ferguson, the host of CBS's the Late Late show. I really liked his insight on life, his wit, and just the things he would disclose about himself on the show about life and what he had been through. It hit a good nerve with me.
I then started watching his movies and read his book that was wonderful!! Through all this I was becoming a big fan. So in early March I found out he was going to be near Chicago IL, which is 6 hours from where I live. It was going to be in April. I felt like it was something I really wanted to take a change and do. See his act in person.
I ask my husband and he agreed it would be an adventure. Boy, was I wrong. Not about the above mentioned famous person, but the agreement between me and my husband on going.
For weeks we had a series of days of "fury" about the trip. He wasn't sure he wanted to go but was determined to keep his promise. Now how can a person be excited about a trip when their partner is becoming dead set against it..but will do it because he promised????
It was weeks that I don't want to live through again.
We were to leave last Thursday, but the weather was unGodly. It was torrential rains and winds from one end of the state of Illinois to the other. So we canceled. The motel, the boarding for the pup, and people coming by to feed the kitties. I was upset and very disappointed. I was dealing with the situation the best I could.
Well later in the afternoon, my hubby decides we will go for it the next day on Friday the 11th. The show was that night. We got up there, late start as usual, but found our place to stay.
That evening the night was cold, dark, and rainy. Sucky for April. But mother nature has a mind of it's own. Well we started out for the venue, we got there....but no parking. I tried to convince my hubby that the people at the theater told me where we could park. He wouldn't go for it as he get freaked in big cities.
We got lost, it was a strange place, cold, and just didn't work out. We didn't make it to the performance. Needless to say I was devastated, angry, and just depressed. Because after the fact, I found out that the program director of the theater had it set up for me to meet Mr. Ferguson in person.
At the moment I really am not happy. Some of the issues I just can't disclose right now. I am hurt...and I am hating my disability big time. I am afraid that I am going to be out here in the country for the rest of my life being in front of the computer and tv with NO life. I don't think I want that.
So as it stands in my head and my heart, I am going to make changes within me. Some may be scary, but it will help me grow and be.
life as it is
( I am so tired...I decided to copy my blog from my MySpace site.
Since writing last ..... a lot has happened in my life. Some for the good, great, and some events just plain wearing.
Last week was full of excitement. Our power was out for 28 hours. The 3rd ice storm in less than a month and a half. I must say that I am a child of technology because I was bored, cold, and scared shit less that I wasn’t going to have enough battery power for my ventilator. Unbeknownst to people who are around me..I cannot, as much as they wish, can not breathe on my own without the ventilator. So it was touch and go. but we survived.
My nieces were here and I felt so bad that I couldn’t go out. It was too icy, too cold, and I was just plain exhausted from the ordeal of not having power. It made me sad and actually made me realize how old I am feeling...when they wanted me to go out and couldn’t. Wouldn’t you know that today and yesterday was warm and beautiful. If that would have been last week...we could have shopped till we dropped.
The best news of last week is the fact that my two nieces are moving down in August. YAY. right down the road. Not only does that make me happy...but gives me a sense of peace as JIm is getting older, and there will be family around when I need them for support.
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Today..March 13th was and is a tough day. Not only did I have to go to the doctor...he was giving me news that wasn’t so great with me. I told him that I am getting weaker...and that breathing is sometimes fast on the ventilator. He suggested O2. No O2 for me. I had to explain to him, a doctor, that you don’t give people with Post polio syndrome O2. It affects the brain stem and eventually they stop breathing. It is so frustrating that no one ....really understands post polio. I don’t want to die yet. There are days I feel like it..but there is a small part of me that is still a survivor. When I left the doctor I just cried. I don’t cry alot, unless Jim and I fight. But this hit me hard.
Having to go to a ventilator from being a normal independent person was hard enough 12 years ago, but if I have to eventually go to O2...I will ask for plugs to be undone. I just couldn’t take it. No not ever.
I think that is why the trip to joliet to see Craig Ferguson is so important to me. I feel like that will be one of my last trips. I can’t put my finger on it,, but go with gut instinct.
The trip is causing some issues....Jim has terrible anxiety and is scared that something is going to go wrong. If he had his way, we would be living and staying on No Name Road forever. I can’t do that..so it is causing a bit of tension. It didn’t start till yesterday. I wanna go if I have to fucking hitch hike.
I haven’t been a big follower of famous people...there are musical groups I like..but Craig is different. I like his insight on life...so if I can see him..I am doing it at any means.
Thank God Annette is coming down in 2 weeks. I can talk to her. She is about the only person that really understands me....she knows I get tired, sick, frustrated..but has always been there by my side. I just need a big hug from her and a talk. She always makes me feel better. More than anyone knows.
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The big thing today is that it is March 13..a sad day in my heart. Five years ago my best buddy and partner in crime died. I can remember it so well like it was yesterday. As i was wheeling up the sidewalk of the hospital today for blood tests, I was a bit creeped out. Five years ago I was wheeling up that sidewalk to be with my friend Pamela as she was dying. We were there for 7 hours..me holding her hand .... begging her not to die.
Being with someone as they die is something a person will never forget ....whether it is a family or friend. It changes you forever. It makes you see how fragile fucking life is. She will be in my heart forever....that day changed me on a lot of levels that NO ONE will ever relate to or understand.
God Bless you Pam..my sis...I miss you so much.
Enuf for tonight...I am emotionally exhausted.
peace
a
baggage of old
Yesterday was not a good day. I hate conflict and honesty. Sometimes it just has to be done. Afterwards, it leaves me feeling like a shit, the meanie, the one who is heartless. I am not. I consider myself a good and thoughtfull person. People tell me I am, are they lying? Making up things just to make me feel good or get things?
The conflict makes me feel like I did with all my family as I was growing up, just trying to belong, knowing underneath my skin I was different. I always will be. No matter how hard I try to be liked, loved, and most of all accepted.
I just should have many years ago just let things be. Leave my life of here as it always has been for 20 some years. I wanted to belong, to be accepted, and to be thought of as a person of worth. When I left home I never looked back. I grew and became my own with no one in my territory. Suddenly they are flooding me and I tried to be like them all, and I just can't
Today I feel wiped, meaningless to the world, and wondering what the future will bring. I try to hard, and I must not do that. It leaves me with a big hole in my being. Thanks to my friends that are my family, I am ok, I am not the crazy one, and acceptance is real. Real to my heart, my brain, and I don't feel like an outsider. I must not try so hard with others.
Such is life. I will heal.
The First of 2008
I haven't posted yet this year. There is sometimes I wish I could transfer my MYSpace blog to this blog. Shouldn't repeat...telling myself, shouldn't repeat. So I won't.
The beginning of 2008 has been pretty good. My depression is better. Probably because I am feeling better physically. The fall had a few rough months.
I must say that I am glad that the holidays are over. They were a bit depressing this year. I just didn't have that holiday spirit. 2007 had a few losses and heartbreaks. I lost my best friend Mary. She was so sick, hopefully she is in the "heavens" looking at the people on earth and saying "I feel damn good". Sounds sick I know to some, but she was in so much pain. She isn't now.
I am not a religious person to speak, but spiritual and feel like our spirit is freed when we pass and things are peaceful and pain free.
I seem to be rambling, but isn't that what blogs are for?????
January had lots of birthdays. Mine, Mikey's, my niece's, and my friend Kath. So we have been in party mode even in the cold weather. Jim had a party for my bday, we had one for Mike, and are taking Kathy out for a lunch when the artic blast ceases.
I am so ready for spring to be here. In the winter I can't go out a lot because my lungs tend to stop working, even on the ventilator. I hear that Monday we will be in the 50's ....yay!!!
I have decided to keep this year, 2008, the last of my 40's a positive one. Who knows what the years will bring?
I am not going to let my family bother me...get me down. Maybe some space between me and them will help. I was really let down last year and I am not going to be subject to that again. Not for awhile. I have to be strong and my friends have given me lots of support.
I am off to do and be...
Peace all
a
