Thursday, May 07, 2009

Going Back and Moving Forward

I've been feeling overly vulnerable. I feel weak to admit that I think I'm afraid of the change about to come. Crossing over from what lifes been for me to new opportunities. Hanging on to faith and hope. Pretending that I'm well enough to survive, but also knowing it's really hard to live. It's hard to hang on. Everyone tells me I'm so strong, my strength gives them strength and I'm glad it does. I really am. That's what I want is for others to have strength and survive pain, but I'm really not that strong. Even when I show my own pain, I'm still the strong one.

I remember back in 1991, when my dad was diagnosed with inoperable lung cancer. My dad and mom were managing a motel on the Esplanade in Chico CA. One day my dads leg gave out on him, he was taken to the hospital, my brother-in-law at the time and my mom tried to carry him in because only one leg was working, he was admitted, by that evening the other leg was paralyzed, by the next morning he was paralyzed from the waist down. They tattooed him to begin radiation, but then it was determined radiated would not make a difference. They gave him only days to live.

I was only 22. I listened as family members offered to take him home. He declined. I did also, I begged this man that raised me, molded me, to let me take him home and care for him.

My Master told him he would not be any burden at all. The nurse came in to change dads bedding, I had to step back as the curtain was closed. I listened and cried my eyes out quitely as my Dad told my husband to take care of me, he praised me, saying that of his 5 children, I was the only one that really got it, really understood it. He was talking about nature, he was talking about life itself. My husband promised that he would. I remember my dad saying... "you better". And I thought how would he know? He was dying. How would he know I would be taken care of. How...

My husband was not the man originally chosen for me. My husband had the guts to stand up as a man so young and take me as his own. He took me from two men, one was my father.

That's how my dad knew in that hospital bed 5 years after my husband took me that he was a man of his word. He is still that same man of his word.

When the curtain was reopened, I tried to hold back the tears. I didn't let another drop. I always held my pain inside regardless what kind. My dad told me yes.. he would come home with me. He told me there was no place he'd rather be in his last days. Oh god how I wanted to cry, instead I smiled.

He was transported by ambulance from Chico CA to my husbands home in West Sac. Hospice had already came in and set up a hospital bed, a latrine, a hoist so dad could use his arms to pull himself up to a sitting position. I fed him, I changed his diapers, the bed sores were so bad, finally dad suspended any shame, as I had to clean his bottom which was so raw as I wiped gently his skin would fall off onto the cloth.

My husband let the home be an open door, for any family to come and go as needed to visit dad.

The hospice nurse would come to change his bolus line. He could disperse morphine to himself by pushing a button and be able to have a booster as needed. He stopped eating.
I would give him popsicles. His tongue was raw with sores. My mom lived with us also. She helped, but I was caring for the both of them. For my little sister who's 2.5 years younger.
I remember how they took Xanax right and left.

But I was the strong one.

I watched his stomach constantly as I sat in the kitchen at my writing table. I had a solid view to the living room, I was never far away. I would fall asleep there, awake there.

The night before he died, he pushed my husband and I to go out. I think he tried to pass on while we were away. He kept dozing off the days prior and awaking to saying things like Cy can't believe any of this, Cy is short for his own dad who passed on a year prior. Do I believe there is a light and the possibility of seeing passed loved ones prior to ones own passing? Yes, I do. I've seen it. Listened to it. Some might say family was just on his mind. I would say differently.

When I walked up to his bedside right before going out... he said to me "you look beautiful, melody". I'm not Melody, my mom is. I think he was seeing me as her years prior. I got very drunk at the bar that night, my husband was playing dice against the bartender and winning and I drank the winning drinks. I tried to let go. I was hurting too.

I checked dad upon returning, mom was asleep beside him on the couch. We went to bed. My husband left for work in the early A.M. I got up to check dad again. He was sleeping.

Soon after, peanut (erykah) came in, pulling on me, she was only 2, I woke up and put her back in their room, button (kharisma) was awake too. I started to go back to our room. My heart sunk, I turned back down the hall and back to dad.

His hands were gripping the side of the bed, I had the bars up so he wouldn't fall out of bed. His stomach wasn't moving. I froze for a moment. I knew. I remember holding my breath, I whispered something in his ear (yes I remember what it was) I pulled his hands undone from the bed posts. The grip was so tight. I crossed his arms around his chest, I was laying him to rest. I was accused of killing him by his mother and sister. Perhaps others thought the same... but..

He was a no code. He commanded me that if he started to pass to let him go. This was the man that raised me. The master of all that was his. I remember telling him daddy, I can't do it. I can't not call 911, I can't not save you. When he said to me, "do I have to tell you again", I said no and I promised.

I promised.

And I let him go.

I woke mom up, when she looked me in the eyes she knew. She tried to shake him awake, when the coroner got there, she was in the bed laying next to him. I called my husband.
The home became chaotic. My husband took over, his own dad came. They did something for me a week prior. They made funeral arrangements. I loved my father in law. He was a good man. They contacted veterans affairs and the VFW. My dad had a military funeral with a 21 gun salute. All this for me. And my mom too.

I left acting and modeling school to take care of my dad. I did later return and graduate with an agent. I had to give it up because I had to take care of my mom.

My father in law passed away 10 months later and my mother in law a year after.

I did go on to become poster girl at a local 50's diner and do their commerical. I was always a valuabe asset at work. The two same jobs competed for me back and forth for years. I worked for Eppies Restaurant 4 times and Hueys Diner 3. For a period of time both jobs at the same time. From a regular employee to assistant and General Manager. I went to the top at Hueys. I couldn't go any higher. I'm proud of that. I did all that by the time I was 25. I took care of the man, the children, the home and still had time for a social life.

One day I called home from work to tell him I would be home in a half hour, I needed to stop at the store on the way home. Well.. I stopped at the bar, we were both well known there. Live music was playing, I danced maybe 3 minutes, I slammed a drink from a man I knew well and strictly platonic. I left the bar, went to the store across the street and went right home. When I got home, I was a little late. Not much at all. Well.. my Master checked the register receipt from the store. Busted!

But I never knew that 7 years later it would all come crashing down.

For 8 years it has been nearly nothing but doctors, surgeries, seclusion. I did go to Vocational Rehab in 2005, took a leave for a surgery, returned, completed my pre requisite classes for my major and left because my body kept deteriorating. It became to hard to sit or stand. It just all became so overwhelming. I began to home school. Between the constant pain and medications, my mind is not what it was. Growing up in the MGM program (Mentally Gifted Minds) didn't do me any good anymore. I had began to turn all my focus on RSD/CRPS research by 2004. By 2005, I had a website up and was in communication with organizations of same. I kept researching, looking for clinical trials.
Because Workers Compensation denied treatment other than pain management and medications for so long by the time I got it... it was too late. An irreversable stage.

I suppose I've pretended in a sense that it's incurable. I can go on without that in my head. I have other diagnosis' that I don't even think about. If I don't then I can push the symptoms away. If it's not in mind then I don't have to worry about it. When I have spoken of it... some people assume pity... they couldn't be more wrong.

And then I become a group leader. An acheivement, yes. I've yet to speak with the Senior Leader who's on vacation at the time to let him know I either have to back down as leader or commit to only a half hour a day and on week ends a hour a day. I think I can get all that need to be done..done , in that amount of time.

My team of doctors are really taking over now. I wish I had this when I begged for it 5 years ago. I'm not ashamed to say that I went to a Psychologist and a Psychiatrist and in my intake paperwork I specifically listed that I needed to learn to cope with physical pain.
Instead of helping me they tossed yet another diagnosis on me and gave me Depakote at 2,500mgs a day and Wellbutrin at 400mgs a day.
Without going into further details.. after a few visits over a period of time, I never returned. And quit those meds cold turkey. To give some a time line, I was a member of GCI. I left the meds and GCI behind at the same time.

I became absorbed in promoting pain related websites, advertising... and seemingly endless research.

A program finally came along to help people like me get back to some type of normalcy.
To live some type of decent and fullfilling life. My foots already in the door, I've yet to begin the program itself, as of now, I've gone through the meetings to get there.

I think I'm afraid of change now. At the same time I'm excited. To have a life again outside of the home, even in it, but being able to do things? I can't let that pass me by.

I want to be a success story.

I use to be a perfectionist, I can't have that anymore and I'm not quite sure how to fail. Being secluded and home bound prevents me from failing. I just am.

I never missed work. There were periods of times when I was in Management that I went 4 months without a single day off. A few half days, but not a day off. They were severely short handed and me... it was always so hard to say no. Being a natural submissive can sometimes put one in positions they can't get out of and it did.

I keep thinking about school, I have 3 courses left for my diploma. Courses that years back would have been easy for me, maybe with some difficult parts, but I could have finished this on time years ago. Adobe Indesign an amazing publishing program, Adobe Photoshop and Adobe Illustrator. It's not just running the progam and using what you need. Heck, I've used these programs, but not to the extent needed for a diploma. Making Master templates, Book designs, custom illustrations. Ugh... it's just harder for me now. It just is. I was hand coding html 12 years ago. Hand coding all of it. I only learned to used a template a few years ago and it drove me nuts. Now it's easy to "use" a template, but not create a master one. Making a book to where the pages turn, not click to the next. This is what I have to do and so much more to graduate. I made a webpage with Microsoft Word. Most people only use it to write with. There's so much more to these programs that's what's on the surface.

I've done so much in my life in during the gloomiest of days.. it scares to me to think about when it's going to run out.

I think of my dad and what happened to his legs and I think of me... and I can feel it.
I tend to believe some of us are here to walk the shoes of everyone. I've walked many.

Our house hold is both black and white, I'm not talking about theories or philosophy, I'm speaking in the literal term. I am not shamed. I would feel shamed for the person who didn't like it. While some may pity me for being open, I would pity them for being closed.

Of course there are a few things I've probably never mentioned, but they surely aren't secrets. Actually I've probably mentioned everything at some point or other over the years. In articles, essays, forums, etc.


It's hard to move forward when you've forgotten how to...

Until next time...


Louve said...

Wow! You've been thru so much in your life!! {{hugggggggggs}}

I know it must be scary, this change you're facing. I know you have journals. It's going to be fascinating to see and read back and remember as you make these transitions.

As always, I'm keeping you in my thoughts and wishing you the very, very best.

Huggggggggs again.

His kajirah said...

hugs back to you Louve

While I'm also removing stressful people in my life as part of my transition, I am blessed to have found such a wonderful friend in you.


Thank you

Snowbrush said...

"That's what I want is for others to have strength and survive pain, but I'm really not that strong."

Which works to your advantage because it helps people feel understood. If surviving pain and disability came easily to you (ha), you wouldn't have much to offer others. You couldn't really relate to the pain and fear of others. You inspire me, probably more than anyone else I know.

I'm sorry that you were accused of killing your father. Such thinking would seem to imply that a rift existed between you and some others in your family.

Peggy, like your husband, was there for her father-in-law. His real daughter was not. He died in this house with us at this side n 1994. I was blessed to witness the deaths of both of my parents. I was also blessed to not have to clean their asses. That takes toughness.

His kajirah said...

Hi snow

I think the rift began when dad chose to come home and live with husband and I in his last days instead of going to his mom or sisters. When I was younger I was close to both of them, but to this day it's never been mended no matter how much I've tried.

You said "Which works to your advantage because it helps people feel understood. If surviving pain and disability came easily to you (ha), you wouldn't have much to offer others. You couldn't really relate to the pain and fear of others. You inspire me, probably more than anyone else I know."

That's where I've been struggling these last days is that I've been given the opportunity to move forward even in the smallest of ways and live out some kind of normal life but by doing so, I may not be as available to the people that have put their trust in me to understand and to feel what they feel and by doing so be one to really understand what they're living with. Some turn to me because they're own doctors don't understand, some for medication advice, some for hope, some just for a shoulder to listen. And I listen.

I can't medically advise them, I do often give advise and personal experience but refer them to their doctor too. There's a fine line we can't cross as Leaders.

It's like a "what do I do" kind of feeling. And the best I can come up with at the moment is to try my hardest to lead both, have both. My life with my family and remain is the groups life as well.

Participate and lead by priority. When the group is okay with banter among themselves, I go to the most important in need. I still have a few days or more to figure this all out.

Thank you Snow
Warmest wishes