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mindless_wheels
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| | Subject: | A difference a year makes, imagine 14 | | Time: | 02:33 pm | | Current Mood: | ![[mood icon]](http://p-stat.livejournal.com/img/mood/classic/thinking.gif) contemplative |
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| 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 | comments: 1 comment or Leave a comment   |
| | Current Location: | home | | Subject: | up and down emotions | | Time: | 04:14 pm | | Current Mood: | ![[mood icon]](http://p-stat.livejournal.com/img/mood/classic/smile.gif) happy |
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| My emotions are quite different from last week. A girl with raging hormones and emotions in her 40's (yes 40's) but not in a foot in the grave yet, is unbearable. First I am happy, then sad, the about ready to cry, and then up again. Geeeze.
Last week I was so depressed about my shitty trip to Chicago. I felt hopeless like I was never going to take another trip in my life. My husband hates to travel, were I want to do as much as I can and see the world before I get to weak to do so.
Now this week...I am happy, excited, and so glad that spring is here. I think the trip to Michigan is confirmed, both Annette (my childhood friend) and Michelle, my college friend, are taking to see Craig Ferguson in Royal Oak, Michigan June 13. They know how devastated I was about the whole Chicago thing and my missing my chance to meet Craig.
So off we are going on a "girls trip" for 6 days. We are going to Chicago to pick up my friend Annette and then driving up to Michigan. The day after "Craig" we are driving up to Canada.....I have some friends up there.
The most exciting thing in the past few days is 1. my dad is coming down to see us in a week and a half, and 2. I got an email from the director of the theatre in Michigan yesterday saying that the "wheels were turning" for me to get to see Craig Ferguson backstage. If that is true..I will be so damn happy. I can't tell you.
Can you believe that I have never in my life been such a big fan of someone. I always thought it was kind of cheesy to be so interested in someone famous. There is something about Craig Ferguson I can relate to, for many reasons...one that activities of the 80...did a bit of drinking, etc then myself (we are about the same age). I had major drug and alcohol issues. That is what I tell people as to why I am in the shape I am in..too much partying in my college days.
Also, he just seems human. I like that..he seems real.
I have been through so much and I relate to others that have been through shit too.
The last reason I am excited in doing this..is my late friend Mary. ( I think I have posted that before)...she was really a fan of Craig Ferguson, she was very ill and watched tv all the time. She would watch Craig on Drew Carey and laugh her ass off when she was in chronic pain.
I found out this past October that she passed away, she was like a sister to me. Her family neglected to call me and let me know. Since then I have been depressed and at times felt like giving up. The planning of these trips and possible meeting Craig Ferguson has kept me going. Kept my mind off the loss of my best friend. We shared everything.
So with a hope and a prayer, things will go better this time.
You know I really am not a depressive person. I enjoy what life I have had, even tho there has been some scary brushes with death. I enjoy every moment I have with this ventilator. Hopefully one of those moments will be meeting Craig.
If not, just going on a trip with my two best friends and feeling free will be the most awesome feeling.
Peace all
a | | comments: 3 comments or Leave a comment |
| | Tags: | girls, happy, trip | | Subject: | Traveling and Disability | | Time: | 03:13 pm | | Current Mood: | excited |
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| Boy is having a disability a pain in the ass. I spent all day today finding wheelchair accessible hotels for the big trip in June to see Craig Ferguson. I am going this damn time if I have to walk myself. (fat chance)
I am feeling hopeful. My friend in Chicago is looking into places to visit and stay, has her days off already, and writes me a notes
on her myspace account everyday to keep in touch. Saves on the cell phone minutes and is easier on my trached throat.
My other friend here in town is also excited about the "girls" trip. It will be the first trip without my hubby. We have been together for 16 years and through all the medical shit, we never have been apart for a trip. The rare trips we go on, we are always together.
Us girls....all in our 40's are going to kick some serious partying and vacationing butt. So now my heart is happy, even if it will be my last trip of my life. Want more could a girl want????? TO road trip with the girls and to see Craig Ferguson.
YAY.
*** I did find a really nice hotel 3 miles from the theater. ******
Life can frigin rock. | | comments: Leave a comment |
| | Subject: | Life as it goes.... | | Time: | 10:03 pm | | Current Mood: | ![[mood icon]](http://p-stat.livejournal.com/img/mood/classic/sad.gif) disappointed |
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| This year...as 2008 approached, I promised myself adventures with Jim for a number of reasons. One being I have lost so many friends in the past years through their deaths, that I wasn't going to waste my life sitting at the computer, being depressed. That I was going out and live a life...like so many people do. The second reason is, I really don't know how much time I have. Days are going where it takes me longer to move in my chair, my muscles are getting weaker as if they too were as tired as my brain. So who knows what time will bring?
All my life I have tried to have a positive attitude, to see the bright side of everything. Even through the worst in 1994 of getting a permanent trach and ventilator, I thought my life would be quality. I wasn't looking for quantity..but ways in which I could live a productive life.
That isn't really what got me down...it was my weakness shooting through my body as each good friend that I loved, shared with, drank with, lived life with passed. Each time it felt like a beating. A beating that I wasn't able to overcome. I tried until this past October when my best friend from college, the person I shared everything with was gone....Pooooof. Not ever to be on this earth again.
Through the holidays and my own medical issues, I managed to suppress the grief, the loss, the wondering of what was going to happen to me? Lately in the past two months I just can't shake this feeling of losing people I love and the possibility that the people I love may lose me.
In the weeks that have passed I have tried to figure out adventures. Things to do ONE last time. To no avail, things haven't panned out. Guess why? My disability. IT sucks. Society still doesn't see us as equals. It isn't something that laws can really help. We tried the ADA from 1990..that is great in some sense...but it does not cure the bureaucracy that I go through almost everyday.
I tried to get tickets to a concert, no disability tickets left. I tried for another concert that I really want to go to in April, I got an email from TicketMaster, one of the biggest ticket brokers for events in the world...and they said they can't help people with disabilities. I am heart sick, because I know this second adventure I tried, isn't going to happen.
There are days I am scared that I am never going to be alive long enough to do the things I want. Freedom isn't in the cards for me either, to just go off and be and do. Because I am dependent on two machines. A wheelchair and a ventilator that constitutes care from others all the time. it is almost like being in jail. At least in jail, you have the ability to get up and pee by yourself with others around. I know that sounds crude, but it has come to that. Is this quality?
I would never do anything to take my life, my life is valuable in my head...but I feel like I am tethered to people, medical issues, and losses the rest of my life. My freedom. I would give anything for freedom, to drive anywhere and not be seen for days. Every time I do something I have to plan, to make sure things are in it pattern so that I can live with machinery that gives me the breath of life.
I really am not a depressive person. I have tried to overlook all the baggage of life, but lately that baggage is getting really heavy. Too heavy for me to be happy and smile and optimistic about things. | | comments: Leave a comment |
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mindless_wheels
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