With the new Wonderland movie coming out my social media has been loaded with Alice and her crew and in turn everyone who knows me has endlessly heard about Wonderland. Which really is no different from any other day of the week and my dedication to Wonderland goes as far as tattoos on my lower right arm with my twist to it. I have always told some people close to me that Wonderland is relatable which usually gets me some twisted looks. "Your crazy?!?!" Well yes in a sense lol but not to the sense they infer it to be. Its no secret that people say Wonderland is based on drugs and psych disease as I just upset every Wonderland fan thats against this statement. Then I happened upon a meme relating Alice to POTS which is one the of the diseases I battle. Is the effort of getting up to make a daisy change worth it?? Referring the effort of getting up while having POTS is an effort but so is the effort to get up with crap lungs that CF has left me. To further go on to say that like Alice my reality is different from yours. This is the BIGGEST controversial statement I say for most people. Most people tell me how dare I say that I should see myself the same as everyone else and try to convince that I need to see myself the same or as Wonder Woman tells me a lot of people see me as an inspiration which I quickly shut down. Though I will quickly tell you I am Alice and this is my Wonderland what I don't tell you is I can easily relate to all the characters...
Lets start with the Mad Hatter who sits with the March Hare who is in a perpetual tea party because his pocket watch broke. (read the book). So many people have sacrificed their life to help me with mine. They've giving up everything for me to give me a quality of life. What really hit home to while I was trying to convince Wonder Woman to do gel nails she promptly told me "Why would I do something you can't be around." Here I am trying to convince her to do something as silly as painting her nails and she says that. She sacrifices something so many take for granted to keep me healthy. Like the Mad Hatter she takes the patience to sit with me while I go thru the insanity of my life.
Cheshire!! The cat that everyone loves to send me (not complaining) cause I am the crazy cat lady. He is always the voice of reason with in Wonderland. He has this twisted logic of blatant reality. "You are among the mad." "Why does it matter which way you go when you don't know where you going." Trivial but real. I also have to say you have to half mad to smile and live with a disease you know will kill you one day. I am always up front with my reality as is my health care team. He may disappear from the picture but he is always there. He never leaves but at times he leaves his smile as a way to say I am here but not gone.
Caterpillar or Abselom as he is called in the Tim Burton movie. He always ask rather blunt difficult question. We often face difficult questions. Transplant?? Lung function?? Is there anymore options?? Not to mention tough questions we have to face with our loved ones... Are your prepared for all this?? Can you handle how crap my life can get?? We have to have difficult conversations all the time especially when I was writing my will are you OK wit this life decision?? I am not gonna elaborate much but we've had quite blunt real convo's about life.
The red queen is always angry and want's complete control of every situation. To wear her King is a bit more lax about things. (read the book) I am not angry though I have every right to be though I always have tight control of the situation because I need to. At the end of the day my health pays the consequences no one else. If someone defy's her "off with her head" people almost live in fear of her. Though I have learned to not live in fear of my disease. There are times that it does get quite real. Yes my disease is the red queen and me the person I want to be is the king at times. You want to do this?? HAHA think again!! Stairs?? HA!! Concerts?? Forget about it!! Last minute plans?? Not Happening!!
And the most important to this entire list of characters the White Rabbit who is contasntly looking at his watch going "Im late!! Im late!!"He's so focused on the time and where he needs to be. Which I am typically always late... But here is the thing. Time is precious!! It is so precious. No one says tomorrow is guaranteed. No one says my healthy is not gonna take a turn for the worst no matter how hard we work. Be with people you love. Make time for them and run around looking at your watch as if your late to be where you want to be and with who you want to be. Growing up with a nurse you realize at a young age its not the length of life you live but the quality of it and doing what you love to do. Every moment is precious and a choice to make a change!!
As always
Love
~Poppet
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