"the bubble effect"

i like to think of myself as a very carefree spirit, i know what i like and what i dont and thinking my decisions through was never really a strong suit of mine. spontaneous out of the blue was always more my stlye. trips for the weekend or a last minute concert ticket made my life exciting, and i loved the feeling of impulsiveness. i still do, with my cystic fibrosis worsening ive had to make many changes including the roll with the waves type of life i fell so in love with. i need to plan more carefully to make sure my medications and machines will be with me, i need to plan my days around medicine schedules and iv antibiotics, tickets and events come and go while i sit in hospital rooms wishing to be out in the world where i belong. now on top of that, lets bring the bubble into the picture.

The bubble has always been my biggest enemy while going through this transplant process. It never really used to be there, but seemed to grow around me more and more until one day i felt like it had completely encircled me, the air inside was stuffy and suffocating and the film between me and the rest of the world was constant. the more i poked and prodded to get out the more exhausted i became, the film streatched around me never breaking, but keeping me isolated and trapping the frustrations and anger i had inside with me.

the idea of being in a bubble has been an image many chronically ill can relate to, as our lives are often pulled in different directions due to said illness and the feeling of entrapment is almost eminent. the people who love us want the best for us and we cannot fault them for it, its a part of our lives that we should be so grateful for yet at times the frustration of it all boils over and we begin to resent the protectiveness. my main bubble blower is my sister. shes my rock, shes my one true solid support who would do anything and everything to keep me safe and healthy not just for transplant but in life in general. she is by far my favorite person on this planet which is why it makes it so difficult when i feel the anxiety rise up and i want to snap her perfect neck for trying so hard to keep me safe.


it may be a small thing, like my childish amount of giant fluffy stuffed animals that no near-26 year old should have in her bedroom but i am so in love with and refuse to give up, (a 4 foot giraffe?? lets be honest nobody is going to give that sucker up!) its one of my best friends goldfish that she left with me before going to zambia to work for the peace corps that i will not ever give up on or get rid of. morning glory is now my family until she returns. these things that collect dust or culture bacterias that can be harmful to me no doubt, but in the end are still things of mine that i love and i dont want to part with  these things. its another part of my life, be it material, and  minor, they are still a part of my life that i feel cf is taking away from me. these things are the wand dipping into the tub of soap, preparing to expand around me, they are small but they are restrictions on my life and decisions that i dont feel others should make for me. i want to be in control of what i have in my surroundings.

 then there are bigger things, more understandable things. take driving, we share a car right now and i had an incident in which i drove up on a curb a few days ago. i had a strange memory lapse and it was an isolated incident. i feel fine and its never happened before yet because its technically her car and since she doesnt want me driving i cant do much about it. this is when i feel the bubble begin to encase me and with it my freedom are vacuumed out and i am stuck. i am in my mid 20s and feeling like a child, told what to do when to do it and i have rules.

its difficult for me to take orders in a way from someone my own age, im an adult and i feel i should be making my own decisions and its very frustrating to not be able to do that. at the same time i recognize the love my sister has for me and her though process is not to treat me like a child, she doesnt want to control my life and tell me what to do but she wants me to be safe. and i love her for that. our problem is communication over these issues. were both stubborn and heard headed and can find it difficult to see eye to eye on many topics.

i can see the frustration in her face when i fight her on subjects like this, because in the end i know they are trivial. The grand scheme is that i am going though a very difficult process, one that i was well aware would take many freedoms from me for a time, but slowly i would gain them all back plus more. it will be a diffucult road to come to an understanding, post transplant with the steroids on high will be more than interesting and im sure days will come when we absolutely hate each other. but if she can take a minute to try to put herself in my position and think about how her life would be changed and i can take a minute to put myself where shes at and understand that whats best for me isnt always what i want or whats ideal for me i think we can work through this.

i never imagines the stress levels would be this high, but im happy knowing we can snap at a moments notice but come back together just as quick.

my bubble isnt going anywhere, it will get worse, as i get sicker her worry will heighten. shell have all the best intentions in the world and they will drive me nuts, ill hate her at times and shell hate me right back. fights will break out and oh what fun a roid rage fight with me can be!! however ill always be thankful that when my head is screwed on a little backwards shes there to stand her ground and keep me in check.

ill still fight tooth and nail for as much freedom as i can possibly get, it just wouldnt be me if i didnt. i will not lose myself to these setbacks.