This is going to be one of my more exposing posts. There's been a lot going on in my head as of late and to work through it I think I need to just put it all out there for the world, my world, to see. There are a lot of "ups" to this whole journey that I am totally and utterly aware of and grateful for, but there are also a lot of unknowns and emotional "lows" that I've been navigating as well that I don't know I've let a lot of people see.
The "ups" are overwhelming and emotionally charged in and of themselves. I am truly humbled by the out pouring of love and support that I have been experiencing. I can't accurately put into words how blown away I am by the gifts you all have been bestowing onto me. I can't help but think about whether or not I am deserving of all of this support... It's hard to accept all of this from you when I consider all of the other people out there that are in need and are so deserving that just don't have the group of loving and giving friends and family I am so blessed to have. It truly has made me consider "ego" and I've been forced to totally put it to the side, probably where it rightfully belongs.
I grew up in a beautiful family with a lot of "dysfunction" for lack of a better description, but it was very clear to me that we didn't let the world SEE the turmoil that brewed just under the surface, let alone acknowledge it or speak of it in any sort of mixed company. We all have our family rules and this was a big one for me and it has come up again during this journey... My family wishes they had the means to make this happen quietly for me, without the support I have looked for and received. I think there is a large part of our society that never puts themselves out there the way I have because it is very uncomfortable to admit that you can't do something alone. Not to mention the huge vulnerability that goes along with putting yourself out there. In saying all of that, I think we and certainly I am stronger for having put myself here and am never less than shocked when somebody unconditionally gives to me. It is amazing what I have experienced in such a short amount of time.
If I could I would return all of the dollars and cents I've received if they were needed by anyone I loved and trust me when I say each and every one of you are part of the list of ones that would receive... My cup is full and pouring over, without you, I do not know who I would be. For that my friends I sincerely and humbly thank you, heart in hand, so to speak.
The "low" point I referred to is hard to acknowledge for me. Again because it is a demon that keeps rearing its head, past and present. I have a HUGE fear of disappointing you all and although I have said and stand firm in my goal of NOT PROGRESSING it is hard to ignore the overwhelmingly amazing results that many are enjoying from this procedure. One of my good CCSVI friends came back from her experience and we coined the phrase "circus clown" to describe the anticipation that everyone had for her to come back and start performing her "circus" tricks, or at least her improvements which were small to some, but HUGE to her. The closer I get to my date and the more support I receive the more I have to keep reminding myself that there is no right or wrong outcome. That whatever will be, will be. But like anything in life the unknown is a bit terrifying and I think this is only amplified by your generosity... Not because I don't appreciate it, but I think I'm not comfortable with the idea of ever being the "sad" clown. No one goes to the circus anticipating to see them! Again, I know and acknowledge that this is my stuff and in no way want to make it seem as if I think that these pressures have been placed upon me by anyone other than me. But the feelings and the tears are still there over this, just below the surface.
As I acknowledged earlier in one of my posts; I'd be lying if I didn't say I had hopes about the outcome of all of this. I think these thoughts have amplified themselves because I can see changes and progression on almost a daily basis at the moment and it shakes my otherwise independent nature to the core. I don't want to be a worry in my families mind... I don't want to give up any part of my independence or give up on any other parts of me and my life. The odds are stacked against me in this regard and that is scary to this girl. At 33 years old I am fighting against the idea of the wheelchair having to become an adapted part of me and yet can comprehend the freedom it might also give me. THAT IS TERRIFYING TO ADMIT FOR ME! I've accepted and morphed a lot in this life and I'm open to the fact that this might be a continuing part of me and my journey. I am the master of looking at different situations and after going through the emotions, breathing and saying to myself and anyone around me; "it is what it is and it will be what it is going to be". But I sure am pulling for the idea of having to adapt to more energy and retraining of my body to better assist in its recovery than I am with the idea of settling into anything less than me... And I'm struggling with letting go of the outcome and unsettled with the fact that I don't even have a clue what might be on the otherside of this angioplasty door. Everything in unknown at the moment to me... And it's a bit of an unsettling place to be.
I know I'm not far away from all of the answers and I am blessed to be close to reaching all of my goals in regards to funding this dream. I also pause and pinch myself every now and again with the thought that I will be liberated almost a year from the date that I first got introduced to the procedure known as "liberation" and the amazing Dr. Z... Thank you for coming along on this journey with me and for the hope that you have all given to me! Your love picks me up during my lowest moments and reconfirms to me that it will be what it will be, but no matter what, it won't just be me...
Saturday, October 23, 2010
Thursday, October 21, 2010
Before Video's For You All to See...
It is customary for all of us heading out of country to do these before videos so that we can measure improvements after Liberation because no medical teams are doing that here in Canada...
http://www.youtube.com/watch?v=Ob2u5kWuOi0
http://www.youtube.com/watch?v=JdmDokStZnU
http://www.youtube.com/watch?v=Ob2u5kWuOi0
http://www.youtube.com/watch?v=JdmDokStZnU
Tuesday, October 5, 2010
Got the Date... And Other Stuff
I got my date! November 12th, 2010... The day that it could possibly, maybe, hopefully all change. The question is how do I focus on anything but the date until then??? And what is safe to hope without building myself up to fall?
I've said since the beginning that all I'm looking for is to halt the progression of this crazy train, which is true. However, day after day I see the amazing outcomes that some of my MS friends are having from this procedure and my mind starts to race and my heart starts to beat faster and I dare to think; could that be me? Could that outcome be part of my story? PLEASE, PRETTY PLEASE WITH SPRINKLES ON TOP. And so the expectation train starts to build momentum and I try to squelch it and halt it in its tracks- to the best of my abilities anyway, I am human after all.
People keep asking me what I want to do after surgery if everything goes in the "best" case direction. This question is fair, but a bit of a shovel full of coal being slung into the old choo choo train heading to disappointment-ville. The truth is, I haven't let myself go there that much. But I'd be lying if I told you I haven't let my mind go there at all. The truth is I want to be able to go hiking with my dog. I wanna ride my bike. I'd like to go skiing again cause I think I'm not done with that one. I want to wash my dishes without it fatiguing me like crazy! I would like to wake up in the morning and feel more rested than when I went to bed the night before... I do want from this procedure.
I guess the real truth is that I'm willing to settle for no more progression and a healthy vascular system... But what would you be if you didn't have little hopes, little glimmers of light at the end of the tunnel? There are so many things that I used to do and took totally for granted that I know if I did receive back, I wouldn't. I would revel in the extra moments of energy I might get back. I would love to be able to write or speak and express myself as clearly as I know I'm capable of without searching or pausing trying to find a word. I would walk my dog extra long and do tai chi and yoga without feeling clumsy and unsure of my balance and where abouts. I'd love it if I didn't have to know where all of the free bathrooms in the city are located in order to avoid embarrassing accidents. I'd love to meet a guy and not wonder what he thinks of my cane and when I should bring up the whole MS thing... Or heck go to an interview and pray they don't pass me by based on that elephant in the room.
Do I have my date? YES! Am I excited? You better believe it! Do I have hopes in regards to healing? Obviously... Am I for all intents and purposes still humanly scared and worried? Yeah... I sure am. My whole life I've been concerned with not disappointing people and I have to tell you, since you've become apart of this journey with me... I really don't want to let anyone down. And so with all of that said, I guess the best way to sum up what I'm feeling and thinking is to simply say I reserve the right to be skeptically optimistic. And so it is.
I've said since the beginning that all I'm looking for is to halt the progression of this crazy train, which is true. However, day after day I see the amazing outcomes that some of my MS friends are having from this procedure and my mind starts to race and my heart starts to beat faster and I dare to think; could that be me? Could that outcome be part of my story? PLEASE, PRETTY PLEASE WITH SPRINKLES ON TOP. And so the expectation train starts to build momentum and I try to squelch it and halt it in its tracks- to the best of my abilities anyway, I am human after all.
People keep asking me what I want to do after surgery if everything goes in the "best" case direction. This question is fair, but a bit of a shovel full of coal being slung into the old choo choo train heading to disappointment-ville. The truth is, I haven't let myself go there that much. But I'd be lying if I told you I haven't let my mind go there at all. The truth is I want to be able to go hiking with my dog. I wanna ride my bike. I'd like to go skiing again cause I think I'm not done with that one. I want to wash my dishes without it fatiguing me like crazy! I would like to wake up in the morning and feel more rested than when I went to bed the night before... I do want from this procedure.
I guess the real truth is that I'm willing to settle for no more progression and a healthy vascular system... But what would you be if you didn't have little hopes, little glimmers of light at the end of the tunnel? There are so many things that I used to do and took totally for granted that I know if I did receive back, I wouldn't. I would revel in the extra moments of energy I might get back. I would love to be able to write or speak and express myself as clearly as I know I'm capable of without searching or pausing trying to find a word. I would walk my dog extra long and do tai chi and yoga without feeling clumsy and unsure of my balance and where abouts. I'd love it if I didn't have to know where all of the free bathrooms in the city are located in order to avoid embarrassing accidents. I'd love to meet a guy and not wonder what he thinks of my cane and when I should bring up the whole MS thing... Or heck go to an interview and pray they don't pass me by based on that elephant in the room.
Do I have my date? YES! Am I excited? You better believe it! Do I have hopes in regards to healing? Obviously... Am I for all intents and purposes still humanly scared and worried? Yeah... I sure am. My whole life I've been concerned with not disappointing people and I have to tell you, since you've become apart of this journey with me... I really don't want to let anyone down. And so with all of that said, I guess the best way to sum up what I'm feeling and thinking is to simply say I reserve the right to be skeptically optimistic. And so it is.
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