Added edit when I started this post there were no other post to your thread, I am slow at typing I guess!
Post Edited (White Beard) : 4/25/2009 8:44:51 PM (GMT-6)
This PAlady is one of those mind boggling things that we are destined to pour over whenever anything in our comfortable lives change,to me this has just been another bump in the road of life.
For me the transition from thinking about the future and actually being able to live with it came when I stopped worrying about and begin doing something about it. I thru myself into the melee of "living" no matter what that entailed versus trying to figure it all out and making a plan. CP is not something that came with step by step instructions and the more I tried planing anything in my life around it the worse it got. Now this is much harder place to get to for some then others as we all know some folks are planners and others are well just doers. Fortunately for me I was a doer all my life. I far too many times pre CP jumped without thought and landed somewhere I would have rather not been at times but in the end it has certainly paid off,having that jumping without thinking virtue in me.
My guide is simply for today,like the previous poster said. If I can make this day the best I can then tomorrow will work itself the same way if I am lucky enough to be gifted with it and that in itself is part of the clue here,how do any of us know if there will be that other day or days to worry and fret over?
In a life surrounded by medical crisis,health issues induced by the very illnesses or injuries that brought us to this road and even the very meds and treatments we are using to endure the road can and many times does cut short or lives and makes the guarentee of another day,well less likelier then if we werent here doesnt it?
I take this day for all I can, I milk the most out of it and squeeze whatever I can from it remembering to stop long enough to let those around me that care know I also care and leave them if I have to with as many warm memories of our time together.
In my own words I dont have time to worry and plan for a day or time that may never get here. I have far to much living to do today and thanks to CP this is the way of my life as it stands.
I have found that looking at my life in these terms of minutes,hours,and a day I do not become so overwhelmed by what could have been or was and is no more.
I know this doesnt work for everyone as some have to have that plan for tomorrow and it is part of their make-up,the calm that brings peace to them it just isnt so for me.
When I lie down for the night I know I have done all that I can do for this day the best that Ii could have done it and take with me the memories of days gone by and the dawn is soon enough to worry about the hours to come.
Blessings and peace to each of you and here is hoping that every one of you finds his or her way thru this which life has dealt you without losing yourself in the processes of it.
I have been longing to get back home today and to get on the computer and get back to my friends and family here on this forum. PALady You said:("Looking ahead means letting go of what was (ouch), but I want to try to see my life as a bit of a blank canvas now.") That is exact how I feel, but I have been dragging my feet on the letting go, the house should have already been up for sale, the list dividing stuff up should have been to the lawyer a long time ago, I should have gotten the stuff done, I made excuses, why I couldn't do it, ,and not because I have changed my mind about the divorce, I haven't! It has to be! My wife even though she wants the divorce is doing very little to help I guess she figures since I filed I should do all the work. The real reason I have been dragging my feet I think is because I hate the idea of letting go of the house, and some of the belongings, and just "letting go of what was"! It doesn't help matters any that I do not have a plan or any idea of what, is to be! ("not knowing what I want to paint on that blank canvas")! It is not just the idea of letting go of my past, but also knowing deep down in my heart that the "past" can never ever be again, and my future is going to be different, and I don't have any idea what it is going to be, because right now it is a "blank canvas"!
I am sure not ever one here is approaching this crossroad in there life, I am, PALady is, sounds like fatherjohn is too, I am sure that there is others here besides the three of us! The only thing that seems certain is that CP will be with us on the journey down this road. How ever we paint our canvas, CP might not pick our colors or even what we chose to paint, but it will guide the brush strokes that we make!
Today has been a very difficult day, I have been at the "outlaws" house all day today. My father inlaw died this morning he was 92 or 93! This is only the second time I have been up there since we anounced the pending divorce in January! So besides being a very sad,and difficult, day, it has also been a somewhat awkward actually very awkward day!. Her mom ( my mother inlaw) was glad I was there, even if other family member weren't! I had taken care of my father inlaw for many years doing his meds for him and taking him to the Doctor and actually being an interface between him and his Doctor, so we had been rather close! I have lost both of my parents quite some years ago, so my wifes parents have been mine! I know this is not and easy time for their family as they have never lost any direct family member before. Anyway in a situation like this when there are friends and family members every where and you can't even find a good comfortable spot to sit down it is tough! And I definitely didn't want to let them know I was hurting or in pain, they have more than enough pain of their own right now! After 6 or 7 hours, I just could not stand it any longer, and I had to come home! As I mentioned in the beginning of this post, (and I do feel some what guilty for thinking this or saying this,) .. but all day, I have just wanted to come back home and get on the computer to be with my friends and family here at this forum.I know that might sound terrible of me considering the circumstances! But at least here, I know that you all understand what it is like to have CP and that is one thing my outlaws have never ever understood. Many members of that family think it is terrible that I am on disability, and some even have made nasty comments about me using a cain! They say I am to young, and I act and look like an old man, as if this was my choice!! Their attitude hurts and angers me!
PALady this is Rambling what you did wasn't!
Post Edited (White Beard) : 4/26/2009 7:52:58 PM (GMT-6)
PAlady as usual I am humbled here for saying some word or putting some thought here that gives way for another to see light where once there was none ot little,inspiring? I think not so much as proviking you to rethink those thoughts of your own.
It wasnt alway this peaceful of a place for me,this life as a CPer, I have stood at so many crossroads that the names blurred and the need to run was great without direction,fear,the unkown, Oh I am sure.Many times I did just that!
My work was also who I am sadly to say it came sometimes before anything else in my life,kids,significant other,family time,the reunions I missed,the holidays I didnt make,the birthdays I came in late,it is so shameful and brings much remorse for me to ponder on. I regret the memories I never made in that way but I had this overwhelming need in me that I needed to be needed and my job fulfilled that for me,those were the times I found my peace in the hectic workforce of a paramedic running simply on adrenaline rushes of the moment.
I cant say where in this CP state I learned I am still that same person but that from it I had grown to be better more placid in my wants in and needs to be needed and chnaged how I interpreted those needs and their fulfillment but I did.
Maybe the losses? Maybe the loss of all that I was? I cant really say.
I certainly know that your at that place where you will make it as others I see here. Once you accept and try forming plans with the restrictions you hold,your journey to the end is not far. Like a dress that belonged on you before it is still the same dress after the alterations caused by your changing.like aging,or losing or gaining weight,those alterations are necessary for you to ever again wear that dress which you treasure.
My largest battles in this travel should not have been. My greatest anger and times of despair were of my own making. I got caughtup in the hows of raising 5 kids on one weeks pay a month,that was about what SSD was going to pay me versus my salary. I panicked, I raged, I walked near insanity out of fear I wouldnt be able to do it and losing just one of those kids even though it woouldnt have been thru death was well more then I could fathom after I had experienced already one loss.
Wgere do I get the money for shoes,clothes,the things that they were use to? The things all teenagers need to compete in an already peer pressure state? How do I live on as much money a month as I was use to spending each week at the grocery alone? They like me had already suffered so many losses in their short lives how could take away anything more from them? Just rethinking of those times and it how it felt to be that afraid,walking that close to insanity,makes me cringe and sick.
My support was all gone,my anchor in life,my parents,my husband and friend of life as we grew up together,my small child and their sister,gone without their being able to understand why they were losing everything they loved. I was going to fail them as well and fall of this edge and their loss would be far too great. My daughter of 15 attempted suicide that year and came way way too close for any comfort. I did not realize my standing on the edge was effecting them in great waves, Oh God it was much too much to bear even the thought of knowing my despair had become theirs as well.
I got mad, I got oh so angry! The rage inside of me that life or God or whomever was incharge here was NOT taking anything more from me! I would fight to the death for them for my kids for myself and the person I knew I was and always would be. At this time I was still foundering in the system for even the measly SSD, I was trying to raise those kids in the welfare system and subsidzed housing as we lost the home we owned early out in this game and I had very little equity in it.
I got up one day with so much I amger I didnt know I had it in me and well to say it scared even me is an understatement. I was like a tornado and I was determined to leave devastation behind when I was thru. I got on the phone the internet, I talked and ranted and I sought every ounce of informationI could soak up about everything that needed to be fixed in my life. Begining with I needed and deserved my SSD, I had worked and paid into that system, I had medical files and documentation that said I would NOT work again for a long long time if then.. I had been to 2 of their Docs and had not any idea what those reports said, I requested them and they said as well what my Docs were saying,then why was I still being denied? I hired a Attorney, I wrote my Congressman, I called the ALJ office on weekly basis to check on when I could expect a hearing date.they knew me by name,they would remember me.
I stopped waiting for help to arrive and went looking for it even though the asking was horrific for me,coming from parents that grew out of the depression and hammered into us that work ethic,take care of your own, I begged if called for I pleaded if it worked and stockpiled so much info I had to go to the goodwill to find a filling cabinet to hold it all. I have resources ontop of resources and I used them. I learned that knowledge was the ultimate power to hold. Knowledge of my health issues,medicaid,medicare,SSD,welfare,foodstamps,subsidized housing vouchers,where to go if we ran short of money or food,or couldnt pay the utility bills, and who would help if the car broke down,all of that info and all of those palces I didnt even know existed out there!
I learned that there was nothing that was too hard to ask for if it meant a difference in my kids lives and it wasnt.
I have fought back and won! You might say I learned to work the system. I didnt feel guilty over one thing I had asked for or how many times I had asked. I had given my virtually to helping others and this time I was the one needing help. I paid taxes out my rearend, I made good money, I gave to the blood bank,the United way, the March of dimes and the list goes on when I was in the place to give. I had paid my dues to this organization and it was time I got something back. I had to take care of my kids and there was nothing short of dying going to stop me.
Somewhere in there the anger gave way to something else and my life evened out,the turmoil boiled down and the years flew by,my kids became adults,and had kids of their own. There isnt a moment that I regret nor a time I dont know they appreciate and understand all that I did for them and how hard those days were. Has it made them better for it? I lkie to think so,they dont squander their money,they dont let time pass them by and they make memories with their kids and family. They are good responsible folks and they give of themselves for they know first hand they might have to ask someday for something in return.
This is our Motto and it belonged to my Mother, " Just do what is right and everything will be alright" It took me far too long after she left me to understand just how complex those few words were but I did and from what I see coming from here many of you will as well.
Peace to all of you and pain free days. When the crying is over and the grief of loss is no longer like a dagger,living returns sometimes without a sound. Our losses of all that we were are just as dramatic as death and we too will grieve for all that was and is no more within our reach or touch.
Hi everyone,whitebeard i agree, if the funeral is wednesday, tell your dr. My son broke his finger on a day I was suppose to see my specialist, I rang and they slotted me in after I'd finished with the frature clinic. Funerals happen, I am sure your specialist would help. But goodluck with the outlaws too, very hard with the divorce, you must be so strong to deal with all the mixed emotional issues, not an easy time for you at all.
I think we are all hoping for miracle cures in the back of our unconscious brains. I watch my kids swim and run and play soccer and its like an extension of me out there. In my head I'm on that field too, my memory of that freedom of movement is so strong. I feel I am grieving for the old me, it really hurts my kids have no memory of me kicking the ball with them. I keep thinking do I have unrealistic expectations that I will be pain free again, am I searching for something that doesn't exist? Should I be happy with what I have?
Palady, I like the idea of the blank canvas. I do try and just enjoy the moment, I try to keep a smile on my face but I'm very much a Scarlet O'Hara too. I find everyday bills and decisions very difficult to deal with, I can't sort of cope with the basics. I have to build myself up to just do the necessities, Keep getting cross at myself. Asking for help is very hard, too vulnerable somehow.
Pamela it must be so awful with your son in denial, so hurtful on top of all your pain. Love to you all and welcome Seajay.
Post Edited (White Beard) : 4/27/2009 2:19:37 PM (GMT-6)
PAlady, we just arrived home and after dumping the suitcases and getting ready for bed, I wanted to sign in and mention something about the canvas. We spend a lifetime painting the canvas, starting over several times and then we think we know how it is going to turn out. We see it clearly in our mind but it fails to materialize on the canvas. Then it happens, what we have already put on the canvas starts to disapear. It seems that we try to stop what has already been painted from vanishing but we are powerless to stop the vanishing. Now we are left with something that does not resemble what we thought it would and we can't seem to find a new vision of what we a re to paint. Now remeber I can't paint to start with and I am in awe of people who can start with a blank canvs and create something that is so lifelike and with a depth that is hard to describe. I am afraid that I won't be able to get anything on the canvas of life that I will recognize or have any depth. Crossroad? I guess we can call it that. Uncertainty, confusion, feeling that we are a victim of being robbed. But life does not wait for us to figure it all out. We just try and keep up with the life that comes our way each day, not knowing ahead of time what it will be. Personally, without my faith, I am not sure what I would do. Everyone has to have something or someone to keep us going. If we lose that, we are in danger. As we loose things, it can cause us to fear as we don't want to loose that which has kept us going. That brings hope.
I guess that rambling can be good as we just let things come as our mind rolls. I hope this makes some since and we can get up tomorrow and start a fresh day of trying to figure out what will be on the canvas. Blessings!
Post Edited (PAlady) : 4/28/2009 1:04:57 AM (GMT-6)