Why dont i deserve the same things as everyone else?

General
1

Everyone keeps telling me that its good for me to vent.

And I have.

But I cant waste my time being mad anymore.

I sat my pride aside, and begged for help. I finally gave in and gave benefit of the doubt to the idea that there are still some decent people who care out there only to be ignored completely.

This just proved beyond all doubt that NO-ONE gives a flying fart in space about anything that I am going through cause I'm still young.

No-one gives a damn that a guy who goes to school 4 years longer than average people though it would be okay to play GOD with my life and fumble.

No-one cares I have to re-cover completely alone, or that I missed EVERYTHING in my only child's life, then lost her. And I get NO MORE chances.

Mostly, no-one cares AT ALL that we have NO money, or that the conditions we HAVE to live in no dog should live in. Trust me, we could fix our TRAILER totally and it could be a shit-hole.

All I want to know is WHY.

WHY dont I derve the same chances and choices everyone gets?

GOD giveth......and neurosurgeon taketh away.

2

Hi Chrystal,

I have no idea how to respond to what you wrote. You feel the way you feel; Your anger shines through- I won't try to change that.

Ron, KS

3

Same reason my daughter doesn’t get the same chances as some others … There aren’t any answers. I am doing my best to appreciate what I have and try not to look back. It’s not easy. It’s a tough haul. But I always hoped/believed something good would happen in the end. I may get very disappointed and forget sometimes, but I still hold onto that belief.

4

I hear RAGE...please contact this group...

http://www.lubbockmhmr.org/crisis_line/

Also, this group might help...

http://www.angelfoodministries.com/about/

Several host sites in your area.

A friend of mine lives in Kakinada India. People there would love to live in piece of crap trailer. No indoor plumbing...dirt floors...unsanitary food and they are Happy!

It is obvious you have your cognitive capabilities...so did Helen Keller and look how well she did! Blind...Deaf and Dumb. AND SHE DID NOT HAVE ACCESS TO THE INTERNET!!!!!!!!!!

5

Everyone deserves the same opportunities, but for some, they are not so accessible.

I too could ask the big WHY question.

Why did I try for 4 years for a baby to be told I'd never concieve naturally - when all I ever dreamt of was being a wife and a mum?

Why did I then concieve naturally against all odds but then have my husband walk out on me and a nine month old baby because HE couldn't cope with fatherhood?

Why did I take him back for him to do the same thing again after the birth of our second son?

Why did my first born have Neuroblastoma - an aggressive childhood cancer - that claimed his life the morning following his 5th birthday?

Why does my second son need a psychiatrist because of how deeply it affected him?

Why, when I remarried, did the man I love have to have the same faultly genes as me - causing our daughter to be disabled?

Why do we all battle with Ehlers Danlos Syndrome, chronic fatigue and pain?

Why are our lives consumed with hospital appointments?

Why did my husbands business go into liquidation?

Why was our home and our car repossessed?

Why has our health deteriorated so much?

Why did I have to have a dammed AVM in my brain?

Of course I can turn all this negativity around, and that is the only way to get through it, learn to accept it and make the most of what life you are given, because whatever life throws your way, there is always someone worse off, always.

I have had the pleasure of being a wife and mum - yes the first attempt failed - but I tried again and succeeded!

My husband left me with a nine month old baby - but it made me a stronger person, I learnt to be mum and dad all rolled into one, it made me more independant and more determined!

I took him back because I loved him and my son and I was able to forgive and not be bitter.

I had my beautiful first born son for 5 precious years, he taught me the fragility of life, taught me to laugh in the face of your demons, taught me to love the deepest love - I was honoured to be his mum and blessed to have him in my life.

My second son is dealing with his emotions with the help of his psychiatrist - he's not bottling up his grief, without the help, he would be a mess.

Our daughter is physically disabled, but she is blessed with intelligence beyond her years, what she lacks in mobility, she makes up for in everything else, she is kind, thoughtful, gentle, loving, compassionate and a beautiful person, inside and out. I could not want for a better daughter.

We all have a gentic condition, no one is perfect! So why should we be??? We are what we are, acceptance is a way of life, without it the world would be a bitter twisted angry place.

Our life is full of hospital appointments - but at these appointments I have met some of the best friends I could ever wish to have! People that share our problems and understand, lovely people and friends for life.

As one door closes another opens, we now live in a lovely area, where the people are really friendly, my son is happier at school here than he ever was before, we have wood and forest nearby, we have lovely neighbours.... we are happy here, so we don't own our own house anymore... my husband is employed by someone else.... but what does that matter?

My health in particular has rapidly gone downhill, but it has brought us together as a family, made us stronger and we can see the good things in life, no matter how hard the struggle... they are there to find!

Who knows the reason for my AVM? It's there, thankfully found by accident before it bled... a blessing!

I know it's not always easy to look for the positives in all the negativity.... but it's there if you look hard enough, you just have to keep your head above water and swim, no matter how the tide keeps changing.

Life is for living - so whatever it throws at you - live, love and laugh!

6

Wow Lena,



In the face of all that you have experienced, your attitude is incredible! Your post is in my top 10 of best posts on this site! I want you to know that I am stealing your last line to become my email signature line:



Life is for living - so whatever it throws at you - live, love and laugh!

I just need to add “pray and give thanks” to it somehow.


I'm not sure it's my final signature yet, but it's close, at least part of it. I own a sailboat and sail. When sailing, it's not about the destination, but the journey. I see that parallel in life. Who you share life with, how you help someone and how they help you as you journey through life.

And on the subject of sailing, I read this last night: Tristan Jones in one of his books (paraphrasing) "When you are in the middle of a violent storm alone on the ocean at night and your boat is breaking up, the best thing to do is go below and make a cup of tea." You control the making of tea and that control helps you regain focus on the real issues by settling your nerves.

Best wishes to all,
Ron, KS
7

Thank you Ron,

I see you have a passion for sailing.

My very dear friend is about to embark on a sailing trip to raise money for his charity, New Dawn Family Support, which helps families dealing with any life threatening, life limiting or life long conditions.

David has an ambition to see Antartica. His dream has been in his mind since he was 12 years old, when he first heard of this white continent. The voyage he has chosen is on a traditional sailing ship “EUROPA”. She is 100 years old, a 3 masted bark. David will join the crew as a working member, not just a passenger!

You can follow the progress of Europa on their own website during the voyage:

http://www.barkeuropa.com/ en/traceship/8-follow_the_ sail_ship

She will navigate from Ushuaia in Argentina to Antartica and onward to South Georgia, Tristan da Cunha and Cape Town, South Africa.

The voyage covers 5,000 miles and David and his shipmates will be working at sea throughout March and April 2011.

Did I mention David is 77 and has a very hard life himself!

Life is for living - so whatever it throws at you - live, love and laugh!


Ron, KS said:

Wow Lena,

In the face of all that you have experienced, your attitude is incredible! Your post is in my top 10 of best posts on this site! I want you to know that I am stealing your last line to become my email signature line:

Life is for living - so whatever it throws at you - live, love and laugh!
I just need to add "pray and give thanks" to it somehow.


I'm not sure it's my final signature yet, but it's close, at least part of it. I own a sailboat and sail. When sailing, it's not about the destination, but the journey. I see that parallel in life. Who you share life with, how you help someone and how they help you as you journey through life.

And on the subject of sailing, I read this last night: Tristan Jones in one of his books (paraphrasing) "When you are in the middle of a violent storm alone on the ocean at night and your boat is breaking up, the best thing to do is go below and make a cup of tea." You control the making of tea and that control helps you regain focus on the real issues by settling your nerves.

Best wishes to all,
Ron, KS
8

Hi Lena,

Pls give my best to David. No matter how his voyage turns out, it’s a success for him.

Since I’m now 60 and having watched the movie “Bucket List”, I have a few things on my list to accomplish. David can have Antarctica, but I could see myself on a Caribbean island beach sipping fruity rum drinks every evening as the sun sets…

Ron, KS

9

You do desrve the same things as everyone else. Sometimes it just takes us a little longer to get there than others. Have Faith in God, he is not going to leave you alone! Vent Vent Vent it helps, get it out there, we are here to listen! Please know that you are never alone and try and take it one day at a time. My mom always use to tell me that God will NEVER put anything in your life that you cannot handle. It will only make you stronger. I know right now that it doesn’t seem like it but it is true! Hang in there, pray, you will get what you need through our loving God! The Dr. may have taken some things away buy you can get it back by staying strong and learn to let some things go. Anger is not good to hold in… I will pray for you. Please also remember that there are a lot of people here that are willing to listen and advice for help that you need. Life is hard, always has been for me. I just have to remember that not all things in my life are bad and with God in control, I know I am going to be ok. I cannot answer they why but I can say why not… Growing up, I saw things and lived in places that no one should ever see or be… I made it through and because of that I am strong and understand people a little better. My pAST IS MY PAST, i CANNOT CHANGE IT.I don’t think that I would want to change it, my past has made me the person I am today and with that I have to say I am a better wife, mother, and sister because I never want anyone around me ever have to go through the things I did growing up…EVER!!! If there are things that you still need to get out… get it out!! We are here! <3

10

:slight_smile: Whilst Antartica is very pretty… I’m with you in the Carribean!!!



Ron, KS said:

Hi Lena,

Pls give my best to David. No matter how his voyage turns out, it's a success for him.

Since I'm now 60 and having watched the movie "Bucket List", I have a few things on my list to accomplish. David can have Antarctica, but I could see myself on a Caribbean island beach sipping fruity rum drinks every evening as the sun sets............

Ron, KS
11

Hi Chrystal,

I am sending you my prayers. When I was recovering and at my lowest, the nurse asked me if I wanted to speak with the paster there, and I said no. She asked me a second time, I again said no. Next thing you know, the pastor was there, and we had a long talk. I'm spiritual anyway, but he told me it's okay to be angry at God, He can handle it. I was, and it helped to acknowledge that while I always prayed for support, I could be mad as well. But this was in the first weeks. After a while, anger can block out the light of joy too.

If you don't like one church, find another until you find the right 'church home' for you. Everyone has there own way of finding support. There's also support groups at local hospitals, the key thing is to reach out to others. We all need to share our struggles with other people.

God bless you.

12

Hi Sharyn,

I can really relate to your post. I hope this is not considered hijacking the thread, but I want to share with you one experience I had 20 years ago when Chari's (wife's) AVM first showed up. We were 200 miles from home, in a large city thankfully, when she had her first grand mal seizure. We had cousins in that town, but they were unavailable that weekend, so except for my Mom and family, we were ALONE. At the University hospital, she was put in ICU and given mega doses of anti-S meds, then just observed. My Mom stayed with the kids while I stayed at the hospital.

That same weekend, a young local man who worked at a sandwich shop was critically injured in a diving accident, and he also was in that ICU. Most of the time in the waiting area, it was just me and the young man's friends. All of us had other things on our minds, so we really didn't visit.

That evening, another of his co-workers arrived and brought a bunch of sandwiches from the store. He walked in and sat the sandwiches down and they began eating. One of the young men came over, bringing a sandwich and offered it to me. A simple act of sharing.

I thanked him and we visited a little. He didn't know my name, nor me his, but we were there for each other in a time of need. The sandwich was nice, but the thing I remember is that he shared with me.

In the past few years, I've tried to be alert to those in need, be it a sandwich, a kind word, or a prayer. I think it makes our journeys better.

Ron, KS

13

You are an amazing woman Lena! I am left speechless by your trials and your spirit for life is aw inspiring.



Lena Court said:

Everyone deserves the same opportunities, but for some, they are not so accessible.

I too could ask the big WHY question.

Why did I try for 4 years for a baby to be told I’d never concieve naturally - when all I ever dreamt of was being a wife and a mum?

Why did I then concieve naturally against all odds but then have my husband walk out on me and a nine month old baby because HE couldn’t cope with fatherhood?

Why did I take him back for him to do the same thing again after the birth of our second son?

Why did my first born have Neuroblastoma - an aggressive childhood cancer - that claimed his life the morning following his 5th birthday?

Why does my second son need a psychiatrist because of how deeply it affected him?

Why, when I remarried, did the man I love have to have the same faultly genes as me - causing our daughter to be disabled?

Why do we all battle with Ehlers Danlos Syndrome, chronic fatigue and pain?

Why are our lives consumed with hospital appointments?

Why did my husbands business go into liquidation?

Why was our home and our car repossessed?

Why has our health deteriorated so much?

Why did I have to have a dammed AVM in my brain?

Of course I can turn all this negativity around, and that is the only way to get through it, learn to accept it and make the most of what life you are given, because whatever life throws your way, there is always someone worse off, always.

I have had the pleasure of being a wife and mum - yes the first attempt failed - but I tried again and succeeded!

My husband left me with a nine month old baby - but it made me a stronger person, I learnt to be mum and dad all rolled into one, it made me more independant and more determined!

I took him back because I loved him and my son and I was able to forgive and not be bitter.

I had my beautiful first born son for 5 precious years, he taught me the fragility of life, taught me to laugh in the face of your demons, taught me to love the deepest love - I was honoured to be his mum and blessed to have him in my life.

My second son is dealing with his emotions with the help of his psychiatrist - he’s not bottling up his grief, without the help, he would be a mess.

Our daughter is physically disabled, but she is blessed with intelligence beyond her years, what she lacks in mobility, she makes up for in everything else, she is kind, thoughtful, gentle, loving, compassionate and a beautiful person, inside and out. I could not want for a better daughter.

We all have a gentic condition, no one is perfect! So why should we be??? We are what we are, acceptance is a way of life, without it the world would be a bitter twisted angry place.

Our life is full of hospital appointments - but at these appointments I have met some of the best friends I could ever wish to have! People that share our problems and understand, lovely people and friends for life.

As one door closes another opens, we now live in a lovely area, where the people are really friendly, my son is happier at school here than he ever was before, we have wood and forest nearby, we have lovely neighbours… we are happy here, so we don’t own our own house anymore… my husband is employed by someone else… but what does that matter?

My health in particular has rapidly gone downhill, but it has brought us together as a family, made us stronger and we can see the good things in life, no matter how hard the struggle… they are there to find!

Who knows the reason for my AVM? It’s there, thankfully found by accident before it bled… a blessing!

I know it’s not always easy to look for the positives in all the negativity… but it’s there if you look hard enough, you just have to keep your head above water and swim, no matter how the tide keeps changing.

Life is for living - so whatever it throws at you - live, love and laugh!

14

All I caan come up with to say to everyone is a William Wordsworth quote:

''There are things that we dont WANT to happen, that we have to accept.

And there are things that we would RATHER NOT know, that we have to learn.

And there are people who we just CANT LIVE WITHOUT.that we have to let go of.''

He also said:

''We shall not mourn for what is lost. rather find comfort in what is left behind.''

Before everyone gets spastic. I said not MOURN. NOT SHALL NOT GRIEVE.

But grieve means to cry. feel bad and move on. When you mourn you dont let go.

Its not healthy.

I am mad. But I dont have time to sit and be mad. I have to recover and hafta do it alone.

I'm mad about that.

I'm also very, very mad cause I CAN NOT live with my parents anymore and its not fair that my neurosurgeon made that decision 4 me.

I just keep telling myself I have no other options. But my mom puts WAY too much stress and depression in me. She is the reason for my rage and keeps me from being able to recover. But I make $495 a month, so what can I do?

Please someone help before my entire life goes by. PLEASE!

15

Hi Chrystal,
I would like you to read this note several times before you reply, if you chose to reply. The last line of your last post said:
Please someone help before my entire life goes by. PLEASE!

Please tell me what it is that you would like us to help you with? Please be very specific in your answers, without rage.

I ask that because over a dozen concerned and caring members here have responded to your posts and suggested things that you could do or people you might speak with.

You have responded in anger about several services, so I assume you talked with them. Did you contact the places that Barbara suggested? (Thank you Barbara!) I looked at both websites: The Lubbock Regional Crisis line is staffed 24/7 with professionals according to their website. I’m 100% positive that if you are out of their area of operation, they can hook you up with a closer center. Their phone number is (800) ■■■■■■■■

Earlier today, I read a note you posted about using some information I wrote in another thread. You told me you it would be essential in your everyday life from now on. To be honest, it gave me the big head (grin); I thought I have really helped someone.

But then I saw not one hint of any of that tool being used in your previous post later this same day. I saw the rage again. I feel sad to know that it didn’t help you (see I’m using the tool here.)

You are obviously a very articulate person. Have you written down specifically what you need help with? How about posting that for us in a calm, non-rage tone?

I’ve been around this world a long time, and I know from personal experience that when I’m in a state of rage and trying to convince someone to assist me, it doesn’t work.

You may reply to this or not. And if you do, you can do it calmly or in a rage. It’s all up to you. But you can be assured that if it is in rage, I’m done and you will never hear from me again.

It’s entirely up to you. I do wish you well, and I do care about you, no matter what you might think. I was so concerned, I sent part of your posts to my senior pastor and asked what can we do?

As I was typing my words, the image of Job from the Bible popped into my mind. Guess what, my pastor’s response was “remember Job?”

So I’ll end this note with May God Bless you every day, and continue to be with you.

Ron, KS

16

Chrystal, I know & feel your pain and anger all too well. There are days that I am EXTREMELY conscious/aware of the anger I have over the ‘lack of help’/inconsideration of others/what I’ve ‘lost’ (=EVERYTHING). The ‘truth’ we all can now see in others isn’t always ‘pretty’. Here’s how I cope: EXPECT (I didn’t say ‘don’t accept’) no help from anyone nor any place/organization and rely upon your own self to pull you out of this ‘hole’. (That way, it eases your anger/rage (which isn’t good for us) and it makes you stronger (and NO ONE can ever take that from you). You see, one will never be disappointed/angered when one isn’t ‘expecting’ something that doesn’t happen and one is pleasantly ‘surprised’ when something (good & UNEXPECTEDLY) does happen). As Ron stated, you are intellectual; therefore, ‘map out’ a plan that would bring you toward the goal of changing your situation, then work towards YOU achieving/reaching at least one thing/way on that plan at a time. (Work on achieving one at a time and before you know it, you will have reached the entire goal.) Believe in yourself and you can do it… “mind over matter”/“where there’s a will, there’s a way” - you survived for a reason and you have yet to fulfill that reason, so believe in yourself and (YOU - 1st & foremost) begin taking the steps that will start pulling yourself out of this hole. NO ONE can do it for you (& won’t); rather you have to be ready & willing to do it for yourself.

17

Yes life is extremely unfair, I agree!! And you can't waste your time dwelling on everything that has befallen you, even though it might feel good to dwell, it only rots you from the inside out. There are no good answers to your questions and not everybody gets the same chances and choices in this world, as we all know too well, all we get is a fleeting chance at life and even that can be snuffed out very quicklyas you and many of us here can attest to. Why did I think my life was going good enough that I could get by without health insurance for a few more months and then BAM! that's when everything decided to go wrong? Who knows!! Only God knows and we are just along for the very bumpy ride.

Get all that venting out of you and try to move forward from this point and try to stay positive!!! I think this AvM thing flips an anger switch inside our brains and we have to learn to calm down and use positivity to keep ourselves from being pulled under.

18

No more amazing than any of you. XXXXX



Jamie Pantelis said:

You are an amazing woman Lena! I am left speechless by your trials and your spirit for life is aw inspiring.

Lena Court said:

Everyone deserves the same opportunities, but for some, they are not so accessible.

I too could ask the big WHY question.

Why did I try for 4 years for a baby to be told I'd never concieve naturally - when all I ever dreamt of was being a wife and a mum?

Why did I then concieve naturally against all odds but then have my husband walk out on me and a nine month old baby because HE couldn't cope with fatherhood?

Why did I take him back for him to do the same thing again after the birth of our second son?

Why did my first born have Neuroblastoma - an aggressive childhood cancer - that claimed his life the morning following his 5th birthday?

Why does my second son need a psychiatrist because of how deeply it affected him?

Why, when I remarried, did the man I love have to have the same faultly genes as me - causing our daughter to be disabled?

Why do we all battle with Ehlers Danlos Syndrome, chronic fatigue and pain?

Why are our lives consumed with hospital appointments?

Why did my husbands business go into liquidation?

Why was our home and our car repossessed?

Why has our health deteriorated so much?

Why did I have to have a dammed AVM in my brain?

Of course I can turn all this negativity around, and that is the only way to get through it, learn to accept it and make the most of what life you are given, because whatever life throws your way, there is always someone worse off, always.

I have had the pleasure of being a wife and mum - yes the first attempt failed - but I tried again and succeeded!

My husband left me with a nine month old baby - but it made me a stronger person, I learnt to be mum and dad all rolled into one, it made me more independant and more determined!

I took him back because I loved him and my son and I was able to forgive and not be bitter.

I had my beautiful first born son for 5 precious years, he taught me the fragility of life, taught me to laugh in the face of your demons, taught me to love the deepest love - I was honoured to be his mum and blessed to have him in my life.

My second son is dealing with his emotions with the help of his psychiatrist - he's not bottling up his grief, without the help, he would be a mess.

Our daughter is physically disabled, but she is blessed with intelligence beyond her years, what she lacks in mobility, she makes up for in everything else, she is kind, thoughtful, gentle, loving, compassionate and a beautiful person, inside and out. I could not want for a better daughter.

We all have a gentic condition, no one is perfect! So why should we be??? We are what we are, acceptance is a way of life, without it the world would be a bitter twisted angry place.

Our life is full of hospital appointments - but at these appointments I have met some of the best friends I could ever wish to have! People that share our problems and understand, lovely people and friends for life.

As one door closes another opens, we now live in a lovely area, where the people are really friendly, my son is happier at school here than he ever was before, we have wood and forest nearby, we have lovely neighbours.... we are happy here, so we don't own our own house anymore... my husband is employed by someone else.... but what does that matter?

My health in particular has rapidly gone downhill, but it has brought us together as a family, made us stronger and we can see the good things in life, no matter how hard the struggle... they are there to find!

Who knows the reason for my AVM? It's there, thankfully found by accident before it bled... a blessing!

I know it's not always easy to look for the positives in all the negativity.... but it's there if you look hard enough, you just have to keep your head above water and swim, no matter how the tide keeps changing.

Life is for living - so whatever it throws at you - live, love and laugh!

19

I understand what grief is, I understand grieving, but it certainly does not mean cry, feel bad and move on!!!

Hold your dying child in your arms, then tell me you can move on!

There are several stages of grief, Anger, frustration, blame, hate, guilt, resentment, aggression.... they are ALL normal feelings, they ARE healthy to express and there is NO set order, NO limit on how many times you feel each one and NO time limit! You learn to deal with the feelings as time goes by, you learn how to live without your child, you manage to get through the birthdays and the dreams of what should have been and the pain of the anniversaries. You learn to remember the best times, you learn to be thankful and feel blessed. BUT you NEVER move on!

Chrystal Pena said:

All I caan come up with to say to everyone is a William Wordsworth quote:

''There are things that we dont WANT to happen, that we have to accept.

And there are things that we would RATHER NOT know, that we have to learn.

And there are people who we just CANT LIVE WITHOUT.that we have to let go of.''

He also said:

''We shall not mourn for what is lost. rather find comfort in what is left behind.''

Before everyone gets spastic. I said not MOURN. NOT SHALL NOT GRIEVE.

But grieve means to cry. feel bad and move on. When you mourn you dont let go.

Its not healthy.

I am mad. But I dont have time to sit and be mad. I have to recover and hafta do it alone.

I'm mad about that.

I'm also very, very mad cause I CAN NOT live with my parents anymore and its not fair that my neurosurgeon made that decision 4 me.

I just keep telling myself I have no other options. But my mom puts WAY too much stress and depression in me. She is the reason for my rage and keeps me from being able to recover. But I make $495 a month, so what can I do?

Please someone help before my entire life goes by. PLEASE!

20

Beautifully stated Leno, THANKS.

Ron, KS


Lena Court said:

I understand what grief is, I understand grieving, but it certainly does not mean cry, feel bad and move on!!!

Hold your dying child in your arms, then tell me you can move on!

There are several stages of grief, Anger, frustration, blame, hate, guilt, resentment, aggression… they are ALL normal feelings, they ARE healthy to express and there is NO set order, NO limit on how many times you feel each one and NO time limit! You learn to deal with the feelings as time goes by, you learn how to live without your child, you manage to get through the birthdays and the dreams of what should have been and the pain of the anniversaries. You learn to remember the best times, you learn to be thankful and feel blessed. BUT you NEVER move on!