http://www.acor.org/leukemia/cll/cllfaq/cover.html
WELCOME TO MY PERSONAL PAGE AND YOURS TOO
This page is dedicated to all those who have come in touch with cancer
Either through their own experiences or someone else’s
Let’s all live this journey together
Just before Christmas October /01 I was diagnosed with Chronic Lymphocytic Leukemia. I went in for a regular check up (figured it was about time) and some abnormalities resulted in cancer tests and bang there it was. This disease is not usually found in someone as young as myself (40 ish) so they say there may be many years ahead of me yet. At first I tried to focus on this and be brave after all, its not that I am really sick like someone who is dying within months. At least this is the way I wanted to see it…
I have since gone through a lot of emotional changes and although people are trying to be helpful especially doctors the words "well at least it could be long term" just aren’t helpful. I have cancer long term or short term it is still cancer and I am just now in May of 2001 starting to face that. Before this I felt that facing up to it meant that I really did cause it myself. In many ways maybe I did by letting emotional things eat away at me. I have felt like I’ve let my entire family down my children, sisters and especially my husband who is a full believer in the system of creating your own reality. So I blamed myself and still tend to blame myself for this turn in my life. I have spent a lot of time in the past three to four years learning to live and let go. I have worked on the emotional burdens of my past and turned them into good things. My life has been pretty good , I’ve discovered many talents and much joy with my husband, children, family and myself. So why this setback? or is it a setback…who knows? After all this could be the start of a new beginning, of new lessons and gifts. After all my husband and I do believe a person who fills themselves with love and believes can heal any sickness. This doesn't mean that there won't be challanges, stuggles or sadness along this journey. It just means I will continue to fill my body with love and face this journey day by day. Whatever it may bring me...
I want to dedicate this page to my thoughts as I go on this journey. I want to share them with my family and you the readers. I don’t know what or how much will be put here but at least it is available if needed to me and to you. I want you to feel free to write me whatever you may have to share regarding your feelings and experiences regarding cancer; and I will with your permission post these thoughts on this page. You don’t need to have the sickness, maybe you’re a family member or friend of someone who does after all it is not just us who have it that carry the burden is it…
A Bad Day
Oh…to hide behind
The darkness of shades
To feel the emptiness within my being
What do I need to find the rot that eats away at my roots?
And keeps my rose from blooming
Have I not faced many fears and slain them with my sword
Filled them with love from my heart
Was this not suppose to cleanse my blood of the evil within
Why instead does it flow with the sickness of cancer?
Within the marrow so deep
Why has my work been rewarded with more fears to face?
Instead of the lightness of burdens released
They say look on the bright side
It’s only Chronic Lymphocytic Leukemia
You may still have many years to live
This is the bright side?
Each day, each night, each year
To know someday it may get worse
Each day my body feeds on this sickness
How soon will the tests come?
When will I need to be fed by others?
Each day the people I love will ask in their minds
How long does she have?
So this is the bright side
Lucky ME…
Roberta Joehle
ATTACHMENT
“As I hold the pen the ink stays within it’s capsule Frozen in Fear”
Attachment;
what am I attached too? Is it my illness; do I see it as a way out; an escape
route from the ugliness within the universe and within my soul. Am I attached
to the sadness of my past? Burdened with the decisions I made then. So many
tears I have shed; tears not for me alone but for my children and the children
of others like me. Was I wrong separating myself from them, could I have
provided more then just the unending love I have for them?
Fear kept me from my children;
fear that I could only give them the dreadful life my parents had given me. A
life I cannot describe in only a few words, but one my memory feels a need to
block out.
Those words; the words of others
still ring in my ears…
Your Useless
You’ll never amount to anything
You’re just like your mother
Stupid
There were many more words; worse ones; words I care not
to repeat
For years the
words were like thunder screaming over and over in my head. On and on they went
until now; today they are only whispers in the wind as it takes them beyond my
ears to hear no more.
Stupid!
Stupid!
YOU are Stupid!
Whispers in the wind as it takes them
beyond my ears to hear no more.
43 years
later and my life is different; its full of love; encouragement and wonderful
words. Beautiful words the only words a young child should hear.
You can do it
You’re beautiful
You’re talented
YOUR LOVED
I create the reality in which
I want to live and my dreams come alive; therefore these are the words I hear
now; these I hang onto and when the unwanted whispers return on the wings of
the wind I look into the mirror and remember these words.
“Am I not more beautiful then the reflection in the mirror”
Did the universe not create me to be as amazing as the
universe itself?
Today I do not believe in mistakes; for what I thought was
Mistakes was
really the learning curves which molded me into the person I am today
Am I not more beautiful a person today then that of yesterday?
“Am I not more beautiful then the reflection in the
mirror”
Attachment to my past, hanging
onto my sadness ate away at my soul and created the sickness within;
Created the cancer and Letting go of these attachments
will heal it.
I am freeing myself of my
attachment; letting go of my past and the things I cannot change. Oh! I may
still shed a tear or two for the lose of many moments with my children; but I
thank the universe for the moments I have with them today. Precious moments
they are... not because I may die today, tomorrow or many years from now after all
“We all die eventually” but because
they are my children and nothing could or can take that away. “LOVE” is the most powerful energy in this
universe. I meditate on it; I fill myself with it and I send it out to others.
Yes I still find the world sad but I also see its joy; its beauty. Today I
chose to create with Love the reality I believe this world could be.
Imagine; Just imagine if
millions and millions meditated on love; filled themselves with love and then
sent it out to others…. Hmmm what kind of world would our creation be…
All my love, smiles and laughter
Roberta Joehle
Live Today as Today
Live Today as Today
And forget there is a tomorrow
Until tomorrow arrives
Then it will be today once again
A Dream is never just a Dream
It is the moment of the present, the past, the future
And today
Live your dreams as if tomorrow never exists
Today is when your dream started
And
Today is when it should be lived
Roberta Joehle
A beautiful poem and heartfelt experience as written to me which I found both sad yet beautiful and helpful when looking at my own thoughts…
I am both father and mother to an absolutely beautiful and
happy-go-lucky 5-year-old daughter. I hope with all my heart to live long enough that
she will remember me in such a loving way, if at all.
I was diagnosed in August, 1997, stage one CLL. The doctor, like yours, broke it to me as "if
you have to get cancer, this is the one to get". Of course I knew I had
something bad going by the need for more blood work after high WBC counts.
I suppose they say that as an encouragement - but I didn't feel much
encouragement, I’m afraid. Actually, I felt pretty damned sad, angry,
scared - you name it - and the tears flowed freely - especially when I
gazed on my 1-year-old sleeping in her bed, her mother having taken off about a month earlier.
Now, 4 years later, what do I feel ?
Well, maybe a bit sorry that I have worried for the 4 years. my counts
edge up but I have had no treatment yet. I have to go again May 16 and I
fear my oncologist is going to suggest going ahead. I have had a nagging cold
for some time now. and, like you, I am scared - and maybe angry too. I
have always kept fit and not abused myself. I get especially angry when
I see overweight smoking fools go by. uncharitably, I say to myself - why isn't it them who are sick ? what fools abuse the privilege of good health ?
By way of expectations for one's offspring. my daughter deserves better than this.
We share many treasured moments but I must admit the tears are never far from the surface.
If I could have one wish, it is to walk her down the aisle. maybe that is too optimistic.
I pray not.
If I could give you advice based on my experience.
It would be - - try not to worry about this CLL that is hard but, yes, it does seem
to be a slow one with any luck.
One lady, a former client, told me surprisingly she had had CLL for 12 years and little had changed.
I never even knew it. that was 3 years ago and she still is fine.
Exercise, I always feel best when I am active, even if I feel tired
before. I never feel more tired afterwards - always better.
I have written a poem for Jennifer my daughter
Angels Two
You’re lying 'neath the covers, with a smile upon your lips,
An angel, sure, you’re nothing less, I kiss your fingertips,
You dream of dolls and dragons, and bicycles and swings,
You’re the stuff my dreams are made of, you’re the reason my heart sings,
Now I caress your cheek, smooth your hair, run my finger round your nose,
You can’t know the joy you’ve given me, that’s a pity, I suppose.
You’re my angel, my sweet angel,
Keep me smiling when things get tough,
I’ll be your angel, your strong angel,
I pray God that’s enough.
Life’s dealt us a poor hand, let’s play it to our best,
For now, you be my angel, God will do the rest,
When the time comes you think I left, it’s a thought just so untrue,
Because dear love I’m, watching o’er, an angel just for you.
Come wake yourself, let’s hurry now, times not on our side,
Let’s do it all, before my call, there’s no place for me to hide,
We’ll tip our cup and drink it all, we’re partners you and me,
Our love will be our sacred bond, for all the world to see.
You’re my angel, my sweet angel,
Keep me smiling when things get tough,
I’ll be your angel, your strong angel,
I pray God that’s enough.
Oh Jenny dear, hold to me fast, don’t ever let me go,
Though you can’t see, I’m right beside, It’s something you must know,
I’ll not let harm e’er come to you, please put your trust in me,
For I’m next to you forever love, in the air and sky and sea.
To Jennifer-I love you so much
The Wings of Peace
I will learn to let go of this grief
And give it wings of its own
Wings of Joy instead of Sadness
Wings of No Regret
I will release the power it has on me
And give it the freedom of Choice
The choice to Heal
The choice of Forgiveness
And
The choice of Joy instead of Sadness
I choose to let go of the Grief, Quilt and Sadness
I choose to give it wings of its own
Wings of only Joy and Freedom
Roberta Joehle
Today not Tomorrow
To dream it
To think it
To believe it
To live it, breathe it and experience it
Is creating it
Is making it a part of you
In these things it exists and therefore it also exists in you
It is now a part of your world
It is your dream
Your reality
You’re today
For no one knows if tomorrow exists
That is why we live today
And each day thereafter
Just as today
For today not tomorrow
Roberta Joehle
Wednesday, June 20, 2001
Below is a comment written to me by a friend of a fellow CLL’er and below this is my answer to her although it is changed a bit from the time I sent it too her. As I thought about what I had written I realized that many have the same question " What can I do to help" I hope this helps a little.
I think everyone suffering from cancer who had the courage, strength and fortitude to write their thoughts and feelings in poetry are greatly to be admired. I wish I could express how it made me feel! I certainly feel I can understand a little portion of what you are going through. I also wish I knew how to help.
Answer:You are already doing alot by just being there for your friend and people like me. As for writing poetry and other things this is something I felt that I could never do before two years ago. My sweetie (Klaus) is very good at prodding me to get out there and have confidence in myself and the abilities that lie within me. I have discovered that we all have just about any talent in us if we want it bad enough; although even now I find it is hard to write things.
I let the news of cancer beat me up and it seemed that my hard work over the last few years was for nothing, so I have had a hard time finding that creativity again. Of course I have had to realize that this is not the end only the beginning; after all I am not gone yet. Another reason for the struggle is; like most people I am too hard on myself and feel that things just are not good enough for others to see or read. That way of thinking is changing because boy LIFE IS JUST TOO DARN SHORT...to worry about others thoughts all the time.
Klaus has been working so hard to make a life for us and sometimes I just don't contribute much on the emotional side like the positive thinking we need to create the life we want. At times I get mad at him inside and scream "What does he want from me isn't having cancer enough" but I know he wants nothing from me, it is what I am expecting of myself that is tough. I know that it is going to take a lot of work from me to cure this illness and that is what I have been fighting. I want to just enjoy life without the struggles…don’t all of us. But now I have this challenge in front of me.
It is a hard thing to live without thinking about the CLL but it is also easy to use it as an excuse at times to not do the things I say I want to do.
Now even with the fatigue I force myself to get off the dang couch and do something even if it is a short walk. I am not saying that I don’t take some days and just catch up, sleep or relax but I what I do try to do is not wallow in it and let it take over my living. I feel if I can control the CLL instead of letting it control me, then and only then will I be on my way to curing it.We do not have to be suffering from a disease such as cancer to find these things out or to wait to do things for people. There are so many others out there that are afflicted in other ways such as the feeling of loneliness and low self importance and it just takes a few kinds words such as yours too me to get them out of their self despair attitudes. It is amazing what a small compliment like "I love your hat" or "I like your smile" etc can do for a person. Most are so quick to hand out criticism or what they call helpful advice; but no so quickly to hand out the positive comments. In fact I caught my husband in that a while back when I had written something and showed it to him. Right away he looked at me and I could see in his face there was something he was questioning and of course it is the first thing that was pointed out. Klaus is not like this often in fact he is the most positive person I know his reaction only shows that we all fall short once in awhile and forget to put forward the positive in others accomplishments first and the advice later. Normally I would let that go but about ten minutes later I kindly asked him if I could let him know something I was thinking and he said sure. Did you notice lately that when I write something you first point out what is wrong with it instead of complimenting me and then saying but I do have one question. You know what, because I pointed this out calmly he took it well and he also could see that it was true and thought about it.
I use to wish that sometimes I were sick just so some would wake up and care or not care but at least show some honesty in what it is they were feeling. I beat myself up with this when first diagnosed because in a way I believe thinking it helped create it and now I really have to work on reversing this creation, this sickness. I am much more careful of my thoughts now especially when I am angry because wishing sickness, death and harm only harms me not the others that I am angry at.
So here is wishing you only positive thoughts
Roberta Joehle
POSTITIVE
Positive thoughts lead us into a Positive life
This leads us into living a long and full life…
I will be in control of my living
I will smile at my anger giving it no room to live
I will be healthy
I will smile at my illness giving it no life within my body
I will be happy
I will survive to live another day, another year
Another lifetime
Roberta Joehle
http://www.acor.org/leukemia/cll/cllfaq/cover.html
I am now Complete
I am complete ♥
This body, This physical shell
Is exactly that!
A shell
My soul
My heart
Is what lives and expands with the abundance of love ♥
Knowledge of illness, pain, fear
That is a part of this physical world
A part of the shell
My soul is pure, strong
And
Abundant with love ♥
My soul is alive
My soul sings
My soul will continue to soar
It will soar with the ravens and eagles that ride the wings of the wind
I will soar
My physical body is only a shell
My soul is what lives
I am complete ♥
Roberta Joehle