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When Life as it is doesn't seem to be that great anymore...........a survivors perspective

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

March 25th 2008, a date that would change my life forever. I lost all reason to continue to move forward doing the things that I knew needed done. I lost all of my chances at dreams to retire and take life easy. I spent more money in the last 2 years than I have in my entire life with this. I spent 2 years worrying about how long I had, how would my family cope, how would it effect my wife and kids, would they do without. God, please help all of us, not for ourselves, but in what this does to our families, their lives, and their chances at ever having a normal childhood...
I live day to day, not so much because I cherish time more now than I did, but because this disease keeps the awareness in me that I could be gone tomorrow because of it. I guess I am sitting here now, at work, and should be thankful I have a job, but this is the 14th day in a row I have worked, 12 hrs a day, just trying to pay bills that have accumulated as well as keep the household going, and Im doing ok, but there is so many that aren't. There are so many that are losing their homes, there are so many that are losing their insurance, there are so many that are losing their lives, and yet I have no way to help and not jepardize my own familys existance, so here I sit.
I took my daughter to Vanderbilt Friday after working all night , my wife drove up and I drove back, but my wife suffers from a seizure disorder that sometimes renders her unconscious, so I had to accompany her and then as she starts to get tired she gets dizzy so I end up driving. Again, its ok and for the most part controlled. But, as I was up there we decided that before we came home we would eat in the Vanderbilt Childrens Hospital cafeteria..............................................................................................................................................................................................................I was ok until I sat down beside a young man that was approx 5 years old. About the same age as my daughter. I wondered about his parents that were there with him and how they were doing financially, emotionally, and just how and where they thought that life would treat or take them, or how they would end up in all of this. The mom sitting there joking and smiling with her son, the father doing what all fathers do best, trying to be as brave as possible in all of this, to be the best Dad ever to a son that would most likely not ever be able to run, walk, or many of the things that are taken so for granted, and yet still knowing that the rest of all of their lives would be so different than the norm, but yet, as I watched them and as I sit here and think about it, they seemed to be ok with it all. They seemed as did the young son of theirs , completely incoherent or uncaring of what tomorrow would entail. They simply laughed and played and enjoyed themselves in the moment while I had to walk over to the window away from that family and bawl like a baby.....thinking about why, the reasoning behind it, if it were my child what I would do or how could I cope. I am a parent, I am a protector, how can I protect if I can't control my own emotion at any given time. How can I sit there and see a young man as he was not having the ability or ever having the chance at having a "normal" life as others will his age. What made him be the bearer of misfortune, why must he suffer his whole life for something out of his control. Im 56, he was about 5, his mom and Dad will spend their lives making sure that he has everything he wants, thats the way us parents are, thats the way we need to be, so as I sat there and returning to my table to throw away the remainder of what I had bought but couldn't eat, I saw the little man wiggle his joystick to make his chair take him to wherever him and his family was heading to...I sat there and thought....Why, why, why.....I see him in everything I do now.....I had 54 years to basically do whatever I wanted to as normally as I wanted, he has none and will go through his entire life being what...happy ? Hes in a wheelchair with most likely no possible way to do anything that a child with fully workable limbs can do but yet he smiles....at me....and I ask myself, how can I possibly feel like life has been unfair to me................Sorry, I have a lot of feelings about different things as they are right now, I just used this site as a place to write my feelings so that I could get them out of inside me.......Thanks for the opportunity to vent...I still am uncertain on how I feel about things.....but that young man has certainly made a great impact on me.....I now have to figure out what I am suppose to do with it.....there lies my frustration..........Love and Hope for us all........Clift

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Clift,
You have a beautiful way with words. Thank you for writing down what so many of us have felt at one time or another. Our daughter has special needs that make her not blend in when out in public. She has been hospitalized many, many times and been through more procedures than I can count. Still, she remains a joyful child. It blows my mind. Dick said that one of the positive things that has come out of horrible cancer is he now has a much better understanding of our daughter. He has the utmost respect for all she has been through. I guess we take what we can from each day and just take a step forward. We find something, anything to be grateful for and hang on to it with all our might.
I'm thinking about you friend. Hope you get some sleep.

Aloha,
Kathleen

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

Don't beat yourself up buddy. You have done the best and probably only thing you can do..you care. In the words of my father to me when as a young teenager I witnessed a very large young man have a heart attack and fall down some stairs and die at my feet "Son ,life isn't fair it just happens". That is a true story Buzz and I guess in your 54 yrs and my 60 we have seen a lot "happen". Just go with the flow mate and trust that somehow somewhere someone knows what the hell is going on. Kind Regards Ron.

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

Thanks for sharing Buzz, the emotional healing is the big challenge. I feel like I am still fighting cancer emotionally even though not physically. It is a challenge. God Bless.

Annabelle41415's picture
Annabelle41415
Posts: 6512
Joined: Feb 2009

Wow that had to have been an everlasting memory. Sorry for that, but your dad is right - life isn't fair. I read a book entitled "Bad Things Happen To Good People" and yup - life isn't fair.

Kim

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I find myself thinking the same exact things as you do, as I'm sure many of us do. Whenever I see one of those commercials about a place that helps fight childhood cancer, or helps guide them through the end with Hospice for children, I think OMG!!!!! This battle has sucked big time in the over 6 years in which I've been battling ... how is it that a child that hasn't HAD any more than 6 years and is in this battle deal with it? I'm sure only with the help of God. Which, of course, some would find an oxymoronic statement, why on earth does God even allow such a young thing to experience the horrors of cancer or any other serious illness? None of us knows why some experience such horrors in this life, while others seem to slide by with absolutely everything joyfully intact, or should I say SEEMINGLY joyfully intact, since we never truly know what another is experiencing from the inside. Unfortunately, others' misfortune, while certainly making us aware of the bigger picture, and the fact that we aren't the only ones in this life suffering, and certainly there are others suffering WORSE fates than we are, this doesn't change the fact that we suffer. Our journey is ours alone and when we are in the midst of misery, it is simply that, miserable. We certainly take the opportunity to pull ourselves up from the bootstraps and carry on when we can, and others play a big part in helping us to do that, but our reality is still our reality. Certainly, we have to admit that our reality is greatly affected by how we experience our day to day life, and how we deal with adversity, and in this way we are helped by becoming aware of the adversity others experience daily. I guess what I'm trying to say is that life just isn't fair at times, and sometimes it just downright sucks big time! Don't feel bad that you allow yourself to get drug down by the daily grind of your personal journey when you know that there are young children dealing with the horrors of what they are dealing with. You have a wonderful heart and can feel great sorrow for the unfairness of what others have to deal with while at the same time feeling bad about what you have to deal with; one doesn't take away from the other. You are strong and I know you will come to grips with what you have been shown in the reality of that young man's life. And when you fully incorporate what you have learned into your life you will be a stronger man for it.
mary

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

when I visited my younger daughter in a 72-hour hold facility for children. She was there (at 14), as many were, because she had 'posed a threat to herself' (attempted suicide). It took my breath away what type of kids were here...some looked 'normal', some, like my daughter, well, looked different (she was mentally retarded as well as emotionally disturbed).

I learned (there were many times in these places before my daughter died) not to tie to closely with anyone...because the shocking truths of their lives were too much for me to handle. But one day, I was working a puzzle with my Stephanie and some other children. A beautiful blonde, blue-eyed boy of about 7 was sitting next to me. He turned to me and said "You know why I'm here?". I replied (being an old hand at not wanting to know...sigh) "To get better". He said "No, you know what I did?", he replied, "I started my house on fire while my mom and dad were sleeping, I want them dead!". Whew!!!

So, there are other terrible things in this world, and I can't explain any of them any better than you can, dear Clift...I guess we just need to make some sense of what they should mean to us, and then let them go....it's part of the 'game' of life.

On a story of hope, though, I will leave you. There was a little girl of 5 at my local relay for life. She had cancer of her eye, and was in treatment, after they removed her eye. She had a great perspective: "I love my mommy and my daddy. They keep me safe. I am ok, I had 2 eyes, so now I only have one...but I can still see!"

Hugs (from someone who is trying to see as well with 2 eyes as this little girl sees with one), Kathi

z's picture
z
Posts: 1414
Joined: May 2009

Hi Buzz,

I have been in similar circumstances. While at work the janitor came in to empty the trash, I had never seen him before. We just started chatting and the attention was drawn to his hair. He is a black man with a full head of hair and he said he would not cut it as long as his 3 year old son is in remission from eye cancer. His son is now blind, but he plays the piano and is thriving. I told the janitor about my experience with cancer and he said he knew there was a reason that we came in contact with one another. I was in tears by the time we parted ways. Whenever I see him now I look at his head and his hair is getting longer and longer thank god.

Lovekitties's picture
Lovekitties
Posts: 3346
Joined: Jan 2010

Dear Clift,
I think that much of what we go through emotionally has to do with the fact that, until cancer, we pretty much believed the philosophy of the “American Dream”…set goals, work hard, do the right thing and it all can be yours. We were in charge of our own destiny.

Now, cancer magnifies every issue, becomes a part of every decision made, colors everything we see and do. Emotions are constantly close to the surface.

Like you, I hate it that I can’t help those who are in financial difficulty because of this disease. It isn’t a matter of “why me”, “why them”, “why us”…it is that NO ONE should have to make a choice between medical care and financial security.

Like you, my heart breaks for the children. Every child deserves a life without worry and pain.

Now that cancer has invaded our lives as well as our bodies, we have to believe in a new philosophy…if we live the best we can each day, take care of those we can, and try to uplift those who are down, we will have taken control of today. The goal has become to string together as many “todays” as we can.

Hugs

Marie

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

"Life is what happens to you while you're busy making other plans"

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Good ol' John Lennon. I have that quote on my facebook page. It's a good one.

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Thank you for sharing with us.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Clift,

That made me cry. Several years ago, before I became a survivor myself, I took care of a precious little girl named Katie, and she was diagnosed with leukemia a couple of weeks after her 3rd birthday. It broke my heart and her parents. Thankfully, she lived through it and is doing well now. She seems very healthy and normal on the surface.

However, I recently talked with her on facebook, and we touched on the subject of cancer. I told her it makes me cry sometimes, and she said it did the same to her. I didn't want to press her too much, but it was the first time she's indicated to me that it weighs on her at times.

I hate it for her, and I hate anything like it for children.

*hugs*
Gail

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

It's a painful awareness, isn't it? I, too, thought of that book that Kim talked about -- "When Bad Things Happen to Good People" by Harold Kushnir, who lost his son. The title says it all. Sometimes we just can't make sense of things that we witness during our journeys. A friend of ours, who had a long, hard battle with stage IV lymphoma and is now doing well, talked about this also. He said that he could understand how someone like him could get cancer but he had a hard time seeing the children, while he was going for treatment at the Hospital of the University of Pennsylvania. Yet....I believe the mourning of those "carefree" days are real and valid, and not to be ignored. Let us feel that pain...it is part of our humanness...and then we move on...and then back again and forward. I think grief comes in waves.
Holding us all in the Light,
Aud

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

I'm glad to read these words. I admire how you let us in to your world - how you invite us to think, feel, and chew things over with you.

I can't remember what I was like before cancer. But I think about the kind of things you're talking about here all the time now. The thing you said that really struck me is, "I now have to figure out what I am supposed to do with it." I can't thank you enough for the reminder that it isn't enough to wallow around with these thoughts and feelings. We have to get somewhere. We have to "do something." If only in our imagination, and hopefully in our physical lives as well, we have to figure out what to do and how to move forward.

If today we say, "Life doesn't seem to be that great anymore," then tomorrow we must say, "Life is good, and I am grateful for the life I have." Not sure any of this makes sense. You just kind of got me talking.

Take Care
Roger

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I don't have a profound moment, I don't have a blessing, I don't have a "yes,this is the reason I live moment" to hang on to.
I just have my moments, that's all.
I wish I could say, this is the reason I live, but I don't know this to be sure.
Why me?
Why me for the moment, because I don't know what tomorrow may bring, death? life?
Crap shoot.
I'm just grateful for my "moments", weeding the clovers, the grass out of my new garden bed, sitting in the sunshine reading my book.
I used to question. No more. I don't question life's new lease, I just find myself grateful whatever it gives me.
Death, is a strange moment, he reaches out, you deny him, you live a moment or two more.
I live guilty, I was to die, yet I still live, and shall live more (I hope)how do you deal with it?
By living, by giving your all to your life, you then give to yourself and to others that couldn't.
You give their memories meaning.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I never imagined not living to be 100. My mother is 81, her mother 100. My father is 86 is mother died at 101 and her mother died at 102. One has died in our family...... my grandson at age 3 months. Realization that I wasn't going to live to be 100 just hit me in the stomach, but being my mother's child, I continued to put one foot in front of the other without tears, and without complaint. That is me the strong one. I can not imagine cancer hitting one of my other 3 sisters, who I love dearly...they are just not so hard...as I.

My daughter lost a good friend to cancer this year, he was 24. He lived a little less then half of my life. I remember him coming around when he was in elementary school. Such a shame. I am grateful that I have lived this far, many more years then he lived.

But...I don't want to die. I don't want to live to be a 100, but 99 would be nice!

sigh...

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