In an instant

In an instant.

That’s how long it takes for our lives to be completely thrown upside down. That’s how long it takes for our reality to become a not so pleasant place. Through the darkness however, there is light – always. I have learned this the hard way. And I have learned that though we cannot control the traumatic things that happen to us, we can control our minds and how we allow those events to shape us as human beings.

Today has been a really hard day on both Perry and I. He received news that one of his close friends had passed away suddenly. Seeing Perry emotionally distraught was harder than I ever imagined it would be. He idolized this woman and spoke highly of her on every occasion. I personally did not get the opportunity to meet her. But although I didn’t know her, seeing Perry in pain triggered something in me that was dark and dangerous. Something I didn’t like. It is death, and death is never easy. And though I don’t like to make excuses for my behavior, being someone with a disease and having to face death in the possible near future just makes things that much more difficult.

I am about to give you two scenario’s. The first; what I did. The second; what I should have done.

Perry received the call that she had passed away. Right away, BAM! I let my fear of death take over and completely blinded myself to the pain my partner was feeling. I actually remember the first thing I thought was, ‘if this is how he’s reacting to a friend, he will be a mess when I die…..how can I put him through this?’ He was on his supper break from work and I was right in the middle of giving Paris a bath. Perry wasn’t gone back to work long when he called and said that a breaker had broken at the mall where he worked and the power was out so they were all heading home.
After we got home, we got a cup of tea and I was wrapping some gifts next to the tree. Perry began to tell me stories about her, and how much of a positive influence she had on his life. He shared stories about their time together and how much of a positive person she was. She always reassured him that his parents would be ok if he ever got the nerve to tell them about his sexuality. He found great strength in her.
I continued to wrap gift, sitting on the floor. It wasn’t long before I had enough and couldn’t stand talking about someone who was no longer with us any longer. My fear of the unknown paralyzed me. We remained quiet for most of the night until I noticed that Perry seemed to be in an ‘off’ mood. I immediately assumed it had something to do with me, and then I got up and went to bed. That was that.

What I should have done

Perry received the call that she had passed away. I was in the middle of giving Paris a bath and should have gotten up immediately and given him a hug and sympathize with him. Reassure him with a smile that it would all be ok. Perry has been my rock through everything; the least he deserved was this.
Perry had to head back to work, but shortly after received a phone call that the power was out in the mall so he needed to be picked up. Should have asked him how he was. But I sat silently as I couldn’t find the right thing to say. (Is there a right thing in this kind of situation?) We got home and boiled the kettle and sat to enjoy the warm liquid hitting the back of our throats after an emotional day. I began to wrap some gifts but noticed that Perry was ‘off’ and needed to talk to someone. I should have put the gift wrapping aside, got on the couch, held his hand and listened to the stories that he had to share about his late friend. I should have asked him what he would like to do for the rest of the evening; can I run you a bath, can I get you something to eat, can I put a movie on for you that you would enjoy.
Perry has a strong love of music like I do, and he seemed like he wanted to sing through his emotions. But I wanted to watch a movie. Therefore I turned the music off and started the film. I did have good intentions as the upbeat, positive nature of the movie, I thought, would have put us both in a better mind frame. But that’s not what Perry needed. I saw the signs of what he needed but ignored them with my own selfish desires.

[I know I am coming across as a real asshole, but this is helping me by sharing with you guys my imperfections and my struggles….it’s a learning lesson for me. I promise I am a pretty good boyfriend, or so he says]

As I read back over the two ways of doing things I am ashamed to see that my own fear, feelings, anxieties, anger and so forth totally blinded me to the pain that Perry was feeling. I was so caught up in my world and how this was affecting me that I failed to recognize that he was in need of my support. He needed me to love him.

This truly is a journey, ya know! I learn things everyday about myself. Sometimes its things I don’t like. But it’s when I am made aware of those things I can better myself. Its when I know what I am doing wrong I can take steps to correct the situation.

So, I went to bed. As I was laying there I thought about how shitty my life was. Had a million and one things going through my mind and then I got the idea to get up and write a blog. An angry blog about my anxieties and how life isn’t fair. A blog to draw attention to the fact that I am sick so please pity me. But before I had a chance to do that, my dear ol’ aunt Heather came online and started chatting with me. She had to bear the brunt of Hurricane Jamie who was right ready to tell the world to ‘F’ off!!! She has this way with me, it’s like I’m hypnotized. She manages to say the right things, and says the exact things that I need to hear. Knowing my tendencies the first thing she advised me was to be there for Perry, and try not to fall apart myself. I immediately in our conversation said, well what about me? I am hurting, and this is affecting me too. She helped me appreciate the fact that my fear and anxiousness over future events is clouding my vision of what I have today. I get so caught up in the future that I fail to see how it is affecting my present. Being a sick person isn’t easy and she reassured me of that but then she reminded me of one important thing;

                    “I have Cystic Fibrosis. Cystic Fibrosis does not have me.”

I have to stop allowing my fear and anxiety rule the way I am going to live right now. The reality is that we all die, one way or another. It is a part of this life. But if we allow the vision of death to blind us to the vision of life, then we will lose a lot of joy and satisfaction in this world. I do not want to become a slave to my Cystic Fibrosis and that is exactly what is happening. Just because I am getting close to getting a lung transplant, doesn’t mean the end. In fact for most people, it means a new, beautiful beginning.
She also helped me to appreciate this fact; I need to start fighting FOR my life and stop fighting against it. When we fight against things we cannot control, we are often left tired and dissatisfied. Life will be as life will be. But how we chose to react to the circumstances around us is truly how we live our lives.
I also expressed to her my fear of leaving Perry to greive after I am gone and how unfair that was to him and how I should be alone…..blah blah blah..... But a life without love is no life at all. And people who do not have CF will die, possibly young due to accidents, or unforeseen occurrences. I was attaching myself to the outcome of death, so much so that I was numb; enabling it to destroy the time I have now. Should I deny Perry the beautiful, once in a lifetime love that we share for each other all because I am afraid of the future? Of course not! But when you are struck with emotions, things seem to be exaggerated and all you need is a good friend to talk you down and reason on the issues you are facing.

So, that was my lesson for today as I am sure you all had lessons of your own. After talking to you guys I feel empowered to relax and stop letting death consume my life, as hard as that is going to be for someone who has faced death his whole life. But I have to try. Thank Aunt Heather for the wonderful advise and wisdom you share with me. I am such a blessed person to have so many people who are patient with me as I try and figure it all out!
“Let the chips fall. The future will take care of itself. You guys just take care of each other.”
~ Heather Summerhayes Cariou, author of ‘Sixtyfive Roses – A sister’s memoir’


Peace and Love,
Jamie Leigh Francisxo