Today a young woman who just turned 20 on June 4th passed away...she was listed and waiting for a double lung & liver transplant. I never met her in person but we had many conversations about CF & transplant and life pre/post....
I cried today because it made me think of Susanne Noble who I became very good friends with...we had so much in common, I knew her before she went to Pittsburgh & received her double lung transplant...and we talked about life post transplant, for her it was not easy at all. She had so many set backs and her recovery was difficult...when she returned home her husband was not there to support her, my heart broke along with hers so many times. I felt her joy when she met a man that loved her and was there for her to the end...and that's what is hard...the end.
I cried today because it made me think of my CF friends who's funerals I sat through...knowing that it could be my funeral...knowing it will be my family who is suffering the sadness of my passing at a young age. I dealt with friends dying of CF when I was in grade school...and yet somehow I stayed optimistic and hopeful, determined CF wouldn't kill me.
I like the term "celebration of life" rather than "funeral services"...but that doesn't make it hurt less. The internet and social media has opened up the CF community world wide and I have friends from all over the country/world that share their life with me & it's a beautiful thing. It's a double edged sword though...the reality of how many young children and adults die from Cystic Fibrosis becomes so overwhelming and at the same time the stories of awesome people who are doing amazing things living with CF are inspiring.
My heart breaks for the families of my CF & transplant friends, it's days like today that I am reminded of the continued pain CF causes people...not just us that live with it but all that know us and love us and want to take our pain away. I KNOW how painful Cystic Fibrosis can be...I was there, I went to the edge and I barely survived. I saw and felt the pain my family and my husband experienced and to be honest...at the very end it didn't scare me anymore, to leave them, I was so sick and so tired I just wanted relief. I wanted my burden taken from me because I could no longer carry it. I knew my family was hurting for me but I wasn't in pain anymore...I had found that moment where I could be peaceful and allow my heart and soul to be peaceful. So I know my friends who have passed before me also found that peaceful moment & I take comfort in that.
So do I think it's a losing battle? Anything worth fighting for until my last breath will never be considered a loss. Some of the greatest men/women to walk the earth died fighting for something they believed in...something that they knew would make the future a better place. I believe that every day I live with CF and every day the medical world advances from the knowledge they gain adds hope that one day CF will be cured.