We have all heard of the terms: sleepwalking, living in your own world, being out of it, out there on your own. Well, yesterday, I heard the words "sleep living" in my mind! I felt I was telling myself something and I needed to grab onto these two words and then figure out what they meant to me. So right now, with you and my computer...I will find out.
As I write, I am hoping that the meaning of sleep living will become clear to me. I have had to alter my life since October, 2009 in order to fit in all the medical routines, appointments, and pill taking that are required in order for me to heal. What has worried me is that not one of my wonderful doctors has guaranteed that my mouth will heal and that I will be able to speak better and eat food and drink liquids. What do I do with this ambiguity...I sleep live.
I wake up in the morning, after going to bed very late. Therefore, I guarantee that I am tired and eventually as the week moves on from Monday to Sunday, I am exhausted. In this state of tiredness I live. I take my pills, use the food tube, go to doctors appointments, write, and exist. At this level of functioning I am alert; however, what I have done is I have distanced myself from life by popping in and out of tiredness. Are you following me? I function well. I pay my bills, write to people, handle business matters - all items that are not a threat to me.
Because I haven't wanted to be fully awake to what has been physically happening to me, I have kept myself just awake enough and tired enough to function. Nothing is too bad or too good. Things are just what they are. But let's look at what I have sacrificed!
I do not feel the vitality of life that I so love. My laughter is infrequent and often muffled. I choose to be alone because it takes less effort. And I have to push myself to do things. But since I have uncovered the concept of "sleep living" I can do away with it.
All I need to do is fully look at what is happening to me and just let it be. My therapist frequently tells me I ruminate...of course I debate this with her...you see my form of rumination is sneaky, I think about my illness under the guise of planning what I need to do.
However, to break the hold that sleep living has on me, tonight I am going to bed at 11PM and waking at 8AM. When I wake up I am going to kiss my partner and cats "Good Morning", say a few prayers, listen to Joshua Bell and then jump into the shower and wash away all the pain, doubt and sleepiness.
Tomorrow, I will let you know if I awake from "Sleep Living" and find a more alive me.
God Bless all our efforts...do something kind to someone you do not know. It's fun. Yesterday I gave a bakery worker a tip for being kind to me and attempting to understand me as I ordered. The money was nice but I could see on the young man's face that what touched him most was that I appreciated his actions and sweetness..........................amf
Thursday, January 28, 2010
Monday, January 25, 2010
Lost and Found
I have been so lost for three months... I have been caught up in a world filled with doctors and more doctors, hospitals and needles, injections and medicine, diagnosis and prognosis. All creating a world of emotional turmoil and tears. I have been lost but now I am found.
Starting in October, 2009 , I have been in a position of learning about the health care system from the inside. I have been hospitalized twice; I am participating in a Protocol Stage I treatment for cancer; I have almost weekly appointments with doctors. I am now on a food tube and cannot eat or drink through my mouth because I have a determined infection; and on October 31, 2009, yes, on Halloween, I fractured my hip as I was walking...just walking. I have been on crutches since then...and will move on to a cane in March.
Throughout all of this I have seen the best in so many people. I have had the best nurses at MSKCC in NY. I have doctors now who care for me - me the person, me the human being. I fired a doctor. Does that amaze you? Well, everyone told me that I cannot fire a doctor since I am not his boss. But my logic was I fired him by throwing him off my health team and getting another doctor to take me on as his patient. If I am to survive I need the best and the kindest medical people taking care of me and now I can proudly say that my new medical team is made up of those people. Remember always that we are entitled to be treated skillfully and kindly!
I have found my friends interesting during this period...they came in close when they could and retreated when their own lives and fears demanded that they do this. My therapist, what a wonderful person and I love her dearly, kept me sane and moving forward, step by step. When I tripped and fell she reached out to me and helped me up with her words so that I could continue my journey.
She told me that sometimes people have to back away when people are sick. I had a hard time accepting that and I kept saying over and over again, "I just don't get it. I just don't get it." It was like a litany for me. I cried...I screamed...I begged... My therapist wrote to me on the computer and called me since I was not able to make my sessions. After asking her why my friends had all seemed to disappear I finally got bored with the question and since I trust her, I decided to accept what she had said and I moved off that question and moved on! It had been holding me back. She encouraged me to do things and to try to find ways to be happy and as hard as it was I did find those things ...slowly at first, but eventually they started to fall into my life.
My partner almost melted from the heat at home. My partner tried her best but had so much pressure placed on her by the situation and by me. I couldn't cope alone and I felt I was sinking fast...Too many things happening so quickly. I had a major infection in my mouth that required me to be hospitalized for 12 days; I needed to use a food tube and not eat; I had to infuse myself through a mediport with antibiotics; I fractured my hip; I couldn't drive; I went back into the hospital with a serious blood infection and almost died. There is so much more but to save your sanity and mine I will end the list here.
I had to update you on where I have been and why I hadn't been writing...but I also want you to know that during the last three months I had great moments.
I had joined Soldier's Angels in 2008 and I wrote to three soldiers stationed in Iraq and Afghanistan and sent packages. Giving to them kept me sane and helped to give my life a purpose. I also got involved with sending post cards and holiday cards to our soldiers. I sent packages to the wounded and I wrote to the President Obama about getting our men and women home. Involving myself in other causes gave my life a purpose and got me to stop, even if it were for a while, thinking about me and my health problems.
I am glad to be back and I have so much to tell you about and so many things to share with you.
Mariposa, mariposa you live your life with such abandon, knowing no fear
Mariposa, mariposa small at birth but large,colorful wings do appear
You enter our lives, as we watch you fly
You move from flower to flower, our eyes follow as you go by
Mariposa, mariposa make room for me
Teach me the gifts of nature that are yours by birth
Show me how to accept without fear what my life cycle is!
Mariposa, mariposa land on my hand, gentle one, I hold you safely.
I write about butterflies because I feel some kind of connection with them. Once when I was volunteering at MSKCC I was asked to speak to a man of 41 years of age who had terminal cancer. He could not speak but he could write and then I answered him. After asking me a few questions, he wrote: "I am afraid to die." Please accept this as truth... I paused before I responded and during that pause I saw butterflies flying around both of us. So my answer to him was that all things have a natural life cycle and just like butterflies we are born, we live and then our life cycle ends. He felt comforted by that and he put his head in my arms and sobbed and wrote: " I know what you mean." There is no answer to why some of us live longer than others. There are no words that can explain why someone is going to die. Some of us have faith and hope. Others believe what they do... I just believe in the butterfly and that I will die when I have learned all that I was sent to learn and I hopefully will be content.
God bless you all! AMF
Starting in October, 2009 , I have been in a position of learning about the health care system from the inside. I have been hospitalized twice; I am participating in a Protocol Stage I treatment for cancer; I have almost weekly appointments with doctors. I am now on a food tube and cannot eat or drink through my mouth because I have a determined infection; and on October 31, 2009, yes, on Halloween, I fractured my hip as I was walking...just walking. I have been on crutches since then...and will move on to a cane in March.
Throughout all of this I have seen the best in so many people. I have had the best nurses at MSKCC in NY. I have doctors now who care for me - me the person, me the human being. I fired a doctor. Does that amaze you? Well, everyone told me that I cannot fire a doctor since I am not his boss. But my logic was I fired him by throwing him off my health team and getting another doctor to take me on as his patient. If I am to survive I need the best and the kindest medical people taking care of me and now I can proudly say that my new medical team is made up of those people. Remember always that we are entitled to be treated skillfully and kindly!
I have found my friends interesting during this period...they came in close when they could and retreated when their own lives and fears demanded that they do this. My therapist, what a wonderful person and I love her dearly, kept me sane and moving forward, step by step. When I tripped and fell she reached out to me and helped me up with her words so that I could continue my journey.
She told me that sometimes people have to back away when people are sick. I had a hard time accepting that and I kept saying over and over again, "I just don't get it. I just don't get it." It was like a litany for me. I cried...I screamed...I begged... My therapist wrote to me on the computer and called me since I was not able to make my sessions. After asking her why my friends had all seemed to disappear I finally got bored with the question and since I trust her, I decided to accept what she had said and I moved off that question and moved on! It had been holding me back. She encouraged me to do things and to try to find ways to be happy and as hard as it was I did find those things ...slowly at first, but eventually they started to fall into my life.
My partner almost melted from the heat at home. My partner tried her best but had so much pressure placed on her by the situation and by me. I couldn't cope alone and I felt I was sinking fast...Too many things happening so quickly. I had a major infection in my mouth that required me to be hospitalized for 12 days; I needed to use a food tube and not eat; I had to infuse myself through a mediport with antibiotics; I fractured my hip; I couldn't drive; I went back into the hospital with a serious blood infection and almost died. There is so much more but to save your sanity and mine I will end the list here.
I had to update you on where I have been and why I hadn't been writing...but I also want you to know that during the last three months I had great moments.
I had joined Soldier's Angels in 2008 and I wrote to three soldiers stationed in Iraq and Afghanistan and sent packages. Giving to them kept me sane and helped to give my life a purpose. I also got involved with sending post cards and holiday cards to our soldiers. I sent packages to the wounded and I wrote to the President Obama about getting our men and women home. Involving myself in other causes gave my life a purpose and got me to stop, even if it were for a while, thinking about me and my health problems.
I am glad to be back and I have so much to tell you about and so many things to share with you.
Mariposa, mariposa you live your life with such abandon, knowing no fear
Mariposa, mariposa small at birth but large,colorful wings do appear
You enter our lives, as we watch you fly
You move from flower to flower, our eyes follow as you go by
Mariposa, mariposa make room for me
Teach me the gifts of nature that are yours by birth
Show me how to accept without fear what my life cycle is!
Mariposa, mariposa land on my hand, gentle one, I hold you safely.
I write about butterflies because I feel some kind of connection with them. Once when I was volunteering at MSKCC I was asked to speak to a man of 41 years of age who had terminal cancer. He could not speak but he could write and then I answered him. After asking me a few questions, he wrote: "I am afraid to die." Please accept this as truth... I paused before I responded and during that pause I saw butterflies flying around both of us. So my answer to him was that all things have a natural life cycle and just like butterflies we are born, we live and then our life cycle ends. He felt comforted by that and he put his head in my arms and sobbed and wrote: " I know what you mean." There is no answer to why some of us live longer than others. There are no words that can explain why someone is going to die. Some of us have faith and hope. Others believe what they do... I just believe in the butterfly and that I will die when I have learned all that I was sent to learn and I hopefully will be content.
God bless you all! AMF
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