Tuesday, July 16, 2013

CF From The Other Side........"What's it like in their shoes?"

When we think of the CF community we tend to think of it as a relatively small community, and it is.  In the US there is approximately 30,000 CFers and a total worldwide of 70,000 of us.  To me, that doesn’t seem like that many people but there are thousands more who are “indirectly”affected by CF. These people are the spouses/fiancés, boyfriends/girlfriends, parents, brothers/sisters, extended family members, children to CF patients (years ago I may not have put that in there but its FANTASTIC WE can have families), and lets not forget the countless doctors, nurses, and researchers. When I look at that brief list you could easily add thousands more to our CF community.  

Even though, there seems to be more individuals who are impacted/indirectly impacted by this disease the feeling of being alone or isolated is still there for MANY people.  So what happens when people feel isolated or alone?  They turn to others who are going through the same things or who they can relate to. Who else do you know on a personal level who is either impacted by CF or has a loved one with CF?  I assume the answer to that question is NOT many people you know who are “in your shoes”.

So what brought this writing topic to my mind?  Honestly, I was having a conversation with the wife this weekend about people not understanding what its like to be “in your shoes”.  The fact of the matter is that no one truly understands the battles anyone goes through unless we can connect in some way.  I do not know how it truly feels to be in a lot of situations.  For one I will never know how it feels to be married to a person who has a life threatening disease such as CF.  I can guarantee you that my wife has thought about losing the man she loves more than anything in this world before.  I know we can say well CF or not no one has a crystal ball and nothing is guaranteed in life and that is so true.  But in all reality, maybe that magic 8 ball that has my life in it may have a few more dice sides with a negative scenario.  I can tell my wife and reassure her that I am doing everything in my power to make sure those negative scenarios do not come up when it comes to this disease.  But I know losing the man she loves will always be in the back of her mind whether she expresses these thoughts to me or not.  

I guess what I am trying to convey is that I will never know how this “truly” feels.  I am just so thankful that my wife has accepted me for who I am. But it does hurt to think that the love of my life would may be one day have to raise our daughter on her own and take care of all the other duties ofraising a family on her own.  The thought of all this motivates me to be so compliant with my health because I want to avoid that scenario if I can control it in anyway possible.  

In fact, during this conversation my wife said to me “I don’t know how you do it every day knowing that you have the possibility of not being here one day.  But I am so proud of you John how you view your life so positively!” I responded with this, “That is the only way I know how to be with this disease is to try to be as positive as I can.” As I have said on my blog before nothing ever comes from negative thinking.  When we think negative thoughts we just create a hole that we keep digging and it’s so hard to get out of it.  

The world of CF may seem small and it truly may be that way. But in all honesty, it doesn’t have to be a place where you feel alone and cannot find someone going through something very similar to you.  You can be a CFer, a spouse to a CFer, boyfriend/girlfriend, a parent to a CFer,the list goes on and on but you should never feel like you are going to battle alone. I suggest that you find an outlet to express yourself and connect with others who are battling the same war. If you cannot find someone in person I encourage you to use all these social media outlets we have at our fingertips So the next time you are feeling alone and would like to express to others who are "in your shoes" look into the world of social media. I suggest blogging, to forums such asCystic Life, CF Connect, CF Forums, and other groups on Facebook (that include the CF wives club, CF mommies, IVF groups, and the list goes on and on).  I know I have found my place where I feel connected to this community in my blog, forums, and Facebook. 

 Those two girls are the reason I FIGHT every day!