Tiny Eden

Thursday, April 9, 2009

April 9, 2009

Dear Cystic Fibrosis:

I am writing on behalf of your landlord, Sam B. You have been residing in Sam's lungs for 24.5 years. During this time, you have caused many disturbances, including, but not limited to, coughing fits, lung infections, weight loss, anger, sadness, frustration, and hospitalizations - just to name a few. Not only that, but you are also very time consuming. Sam spends about 3 hours a day trying to clean up after you by doing treatments, using his vest, and trying to cough you out. Plus, usually the tenant pays the landlord to live there, although based on credit card bills and check book balances, we are somehow being charged an arm and a leg - and a set of lungs. But it seems as though you have not gotten the message. I don't know if you have gotten angrier over time because Sam has defeated you so far and beat the odds that were handed to him when he was 4 months old. Are you angry that he graduated from college and Grad school, has passed 2 parts of the CPA exam, and has gotten engaged? And you are not only disturbing him, you are disturbing the neighbors as well. It appears as though Mr. Pancreas is not happy about this whole arrangement, and frankly, neither am I. Your all nite parties in Sam's lungs cause such a ruckus, that they wake me up and cause me to worry. I don't think you understand what you are doing to him, to me, and to everyone that loves Sam. There are way too many people that love and care about Sam, so I am asking you nicely to please go away. And if you can't go away, just don't be so harsh on him. He does not deserve this - no one deserves this.

Please consider this to be your formal notice in writing. You are hereby notified to vacate the premises (Sam's lungs) within thirty (30) days of the delivery of this notice to you. Your lease was terminated when you caused 2 hospitalizations in 2 months. If you fail to vacate within this period, we will be forced to add more drugs to his already lengthy regimen and possibly add a clinical trial. Just please go away - I am begging you.

Sam's loving fiance, friend, and soul mate.

Sam is unfortunately back in the hospital again and has already been in for 9 days. He does not really feel much better so we are unsure when he will be getting out. It seems as though Easter will be spent in the hospital as well. I am just so sad, angry and frustrated and I feel so helpless that I cannot fix this. It really is breaking my heart. Usually when Sam goes in the hospital, I get upset, but I am able to accomplish my every day tasks. For some reason, this hospitalization has hit me very hard and I am finding it difficult to do simple things like dishes, laundry, making meals........you name it and I don't want to do it. I am just feeling very lonely - not sure if this is because we are engaged now - but I loved him just as much before. Everyone has been so supportive and I really do appreciate it. Well, everyone except for this one idiot who asked me how Sam was doing and when I told him he was in the hospital and I was having trouble coping with it, he told me that by being with Sam, I am doing this to myself. I did not know what to say and it physically made my heart hurt. I responded that I could not help who I fell in love with and that I was not going to not marry Sam just because he had cystic fibrosis. That would not be fair to Sam or myself. But this idiot was young.....probably about 20. He will learn with time. I know he was probably saying it for the shock value. And I was shocked........shocked at his stupidity.

Right now, there is no cure for cystic fibrosis. But that does not stop me from having hope and a dream. Every time I have a dream about Sam, he does not have cystic fibrosis. Everyday, I wish on stars that there will be a cure and I pray that one day, there will at least be a control. I anxiously await a phone call saying that some kind of control or cure has been discovered. Sam deserves that much at least.

Once you choose hope, anything's possible. - Christopher Reeve


Emily said...


have i told you how much i adore you? sam is the luckiest guy to have you by his side. thinking of you and him, especially this weekend. i love you guys! :)


Kirsten said...

Mari Sadela Byram(to-be)...

That is an AWESOME letter to CF. I would be happy to help you file suit against CF if it doesn't listen. :-)

And yes...the control is coming. We just have to keep the fundraising going (Go GREAT STRIDES and Wish for Wendy!!) and the trials filled with willing patient volunteers like Sam so that we can continue the process of getting the science in labs transformed into pills in the pharmacy for Sam, Andy, Robert, and all the others!

Emily Lipman said...

oh goof thats not me! lol

But you know I am thinking about you and Sam as CF is close to my heart. I still wanna know who this boy was who said something to rude to you! Like i am so angry bc some people are so ignorant. You need anything? I hate that he is back there! It's so terrible! Miss you and cant wait to see you!

xoxoxox emily LIPMAN LOL

Raquel Carr said...

I love you and your blog!!!! You and Sam are in my thoughts and prayers!

Dana said...

never stop fighting and never give up hope Missy! Love to you and Sam!