Saturday 8 December 2012

If you want to read more about living a life with Cystic Fibrosis from a different
angle, check out Heather's Book, 'Sixtyfive Roses - A Sister's Memoir'


It's a book that changed my life, and could change yours.




An 'ah ha' Moment


An ‘ah ha’ moment

Well, here we are! Almost at the end of another exciting year with so much to be thankful for. I spent the entire day Thursday meditating on what I love about my life and what I love about myself. It seems that in recent weeks I have become overly hard on myself and I have learned through a friend that I am expecting too much of myself. Meditation is a great way of life, and something I try to use as often as I came to find some Zen. Many people think of meditation as something weird and a concept many people are afraid of. But to meditate only means to bring your focus to a level where you can find peace with your surroundings and dwell on one particular topic, or maybe to even dwell on nothing at all and just simply be. A very dear friend of mine asked me recently, “If you went back a year ago, would you have ever imagined you would be where you are!?!?” I began to sob, because honestly I didn’t think I was strong enough to get through it all. We all tend to minimize our own strengths and weaknesses until being strong is the only choice we have, then we find out we should have been a superhero! She asked me this because I have been finding it hard lately to find balance. I seem to either live in the past, where all my hurt is, or in the future where I feel more hurt will be. It is so much easier for me to live in my past……”Oh I act this way because I was abused by my father…..” or “If you only knew what I have been through in my life, you wouldn’t treat me that way….” Or “I’m going to die soon so why don’t you leave me the hell alone!” But I have learned over the past few days that this really is an unhealthy way to live. It allows you to make excuses for what you are not doing, and should be doing. It allows you to live in a different time where you don’t have to accept reality as it is today. And it also makes you miss out on the blessings of today.

As I discussed in another blog, death is something that was introduced to me at a very young age, and for the longest time I have been thinking that this was a curse. But has it not been a blessing? I question whether or not I would have left the religious organization I was a part of. I question if I would have embraced the life I was meant to live. I question if I would truly value each day the way I do now. I just came in from outdoors; have you ever gone in the woods and just smelled the evergreen trees?!?! The smell is divine! And it’s meditating on these questions that have brought me some wonderful observations.

As I look back on what I have accomplished over the past year, I can’t help but have a measure of pride. Not the kind that makes me think I am better than everyone else, because if you really knew me you would know that that is not the case. But a pride in myself for doing what I knew in my heart was right. And for following my soul’s voice to freedom.

I had a hard couple of weeks, I’m not gonna lie. And I was beginning to get hard on myself again. Thinking that maybe I was making the wrong choices and maybe I wasn’t really living a life that was pleasing to God. Maybe those Jehovah’s Witnesses were right! Maybe the happiness I am feeling now is a mask that the devil has placed over me to make me believe I am doing the right thing. Such foolishness we allow our minds to dwell on or even give any attention too! God is too big to fit into one religion! It seems that when something doesn’t go the way I imagined it to go, I fall into a funk that I find very difficult to get out of. So that’s what I am going to be working on over the winter, is staying above that line that I have now drawn for myself that I am not allowed to let my surroundings affect me enough to cross. This takes a lot of friggen work man! It’s hard when you are someone who is used to taking the easy way out and allowing my mind to wander in that dark place to keep myself out of there. I think I got comfortable being in the dark. But, not any more! I am done with spending my days worrying about the past and worrying about the future. I really am going to be working on this for a while! We cannot change the past and neither one of us can see the future. And the reality of the matter is, I could outlive all of you guys! No offence! But what about if they find a cure for CF next year, then what’s all the worrying about death, dying and sadness going to accomplish? Absolutely nothing, because then your all stuck with me for sure! Life is a gift and it’s too damn precious to be spent worrying about things we have no control over.

I had a real good, deep conversation with my Auntie Heather recently. I was telling her about how sad I was that things happen. People die of disease, people die of tragedies. She knows all about loss, she lost her sister to CF. But her attitude would turn your stomach she’s so brilliant! I have been trying to find my purpose here……what am I, Jamie Chafe here to do? And then she said this to me;

“We are not here to find purpose.
 We are here to create it.”

Well let’s just say that a light bulb exploded over the top of my head, as I understood exactly what she was trying to tell me. We spend so much time trying to find out we are here that we simply forget to just be. “We may never know what our divine purpose is” she reminded me, and assured me that whatever it is, I would accomplish it. We all do! It was just this morning I received an email from someone who has been reading my blog and fighting CF amongst other struggles. It was a letter to thank me. Thank me for writing my emotions down for the world to see. And that somehow when she felt like giving up, she read my words and felt strengthened to go on at least one more day. How can I not be proud of that!? I said right from the get-go that this blog was created for my use. For my benefit. Getting these feelings out through written word has released a burden off me that none of you will understand. The fact that in doing this I am able to be of encouragement and strength to others – that’s a great bonus! I get messages like these all the time from my readers and to this day I don’t know how to answer them back because I am just so filled with joy that my pain and everything I have been through can be of strength to someone else. So, should I not thank my ‘hard times’ for shaping me the into the man I am today? I know that sounds strange, the concept did to me at first when Heather said to thank the Jehovah’s Witness organization for teaching me what I don’t believe. I thought; Ludacris! How can I thank something that has caused me such great pain and almost cost me my life!?

But it didn’t.

This is a journey, a journey that allows us all the take different paths to where we need to get to in life. All those dark and scary roads have led me to the bright and glorious path I am on now! They have made me stronger and have strengthened my resolve to never give up. There is a lot of wisdom in thanking your past, especially if it hasn’t been a bed of roses. I often say that I am grateful to have CF….people don’t understand that. But I wonder if I would view life as beautiful as I do now if I didn’t know my life could be cut short. So, look at your life and thank it for the many hard times you have had to endure. They have helped shaped who you are today! And hopefully you have learned something from each of them.

I feel better already! After writing this entry….. I am determined to not allow negative thinking to enter back into my mind. But hey, I’m not perfect and nor are you, so we are going to have bad days. But I am going to work harder and try and keep that negativity away, will you join me? Life is too short to allow it to absorb all the joy in our lives. Before I leave you again I want to share this last bit of wisdom from Heather. It gave me an ‘ah-ha’ moment.

IMPERFECTION
We are all perfect within our imperfection. See the wisdom there?
It’s our imperfections that make us beautiful. Make us who we are.

_____________________________________________________________________________________

Some jot notes from our conversation

- I have limitations that are obvious, some are not so much
- Stop looking for answers, just let them come
- Stop trying too hard
- Perfection vs. Reality
- Replace a bad thought with a new, healthy thought
- Thank your hardships
- Life is set up this way so we appreciate it
- GET OFF IT! JUST STOP!
- Educate an open mind
- How do I wanna spend my time
- Stop looking for the solution, there is more than one


“Don’t forget to be ‘flawesome’!” ~ Tyra Banks

Peace and Love,
Jamie Leigh Francis
xo

Please watch this 5 minute clip, it will change how you think!

Monday 3 December 2012

The whole truth and nothing but the truth so help me God


The whole truth and nothing but the truth so help me God

I have been doing a lot of soul searching lately. Though I am a million times happier than in my ‘previous’ life, I am still finding it hard to find purpose and meaning on my journey and I’m just trying to figure it all out. In doing a personal inventory of my emotions, it has occurred to me that a lot of my anger and doubts still come from my past and former religion. It’s an everyday struggle to keep the voices I still have inside my head quiet so I can stay tuned to the real world around me.

When I was sixteen and became a Jehovah’s Witness I was young and very impressionable. I was also vulnerable and an easy target as I was trying to make sense of why God caused me to have a disease and plague me with such an unsettled childhood. I was trying to make some sense of something I couldn’t understand. As a young person, I always believed there was a God, but did not know how to find him and I thought becoming a Jehovah’s Witness was the answer. Turns out it was a way to hide from my painful reality that I now know was the way I was truly made to live. But as it turns out, it wasn’t always easy.

Almost immediately they enforced a fear of God, and a strict set of rules that were acceptable and unacceptable to the God of their understanding. And for someone who was longing for answers, I learned to silence the inner voice inside that told me to follow my heart and to lead an authentic life, and I did so until that voice was almost destroyed forever. From early on, they taught me that being a homosexual was wrong and that God hated this kind of lifestyle and would punish anyone who pursued it. It was almost as if they felt demons were present in people who were gay and viewed them as lesser human beings because of their sexual orientation. In fact, I learned to judge everyone. I judged the world! If you weren’t a Jehovah’s Witness, you were nobody. As you can imagine it was an awkward feeling outwardly judging gay people when inside I was crying inside, desperate to lead a life I knew in my heart I was meant to live. I am so ashamed to say that I looked down upon, but only outwardly, on people who practiced a homosexual lifestyle, yet it was never from my heart.

I tried to kill myself by studying the bible more and by searching and searching and searching for something that I was missing. Something that could maybe cure me from this ‘wickedness’ I had inside. They even taught me to “pray the gay away”. Well, it didn’t work. In fact, it only made it worse. It was like the more I prayed to God about my inner thoughts and feelings the more I was moved to take action to live a pure, genuine life. I missed out on so much when I was a part of that society. Spending time with non-Jehovah’s Witness family members was frowned upon. I missed out on the joys of Christmas and the happy times that we as humans celebrate each year. I was taught that such practices were pagan and that God detested anyone who partook in such events. I learned to judge the world and everyone in it and thought more of myself than others only because I felt I was living the ‘right’ was and everyone else was living the ‘wrong’ way. What a hypocrite! The man I was on the inside was totally in conflict with the man I presented to the world. You can imagine the torment I had!

So I did it, I got married. I married a beautiful woman and thought that it was God’s master plan for me. I thought somehow that it would make it go away and that God would make sure to remove the man I was deep inside and replace it with one I thought he wanted me to be. I loved my wife, from the bottom of my heart, and I still do and I think I always will. But there is a big difference in being ‘in’ love and loving someone. And that was the issue. Though I loved her dearly, she was not able to give me what my inner, genuine, and real self craved and wanted so badly. But I stuck with it, slowly dying inside and losing the color in my heart.

If I were to be completely honest, it was harder leaving all my friends who were Jehovah’s Witnesses than it was leaving my ex-wife. Deep down I knew she would be ok. I knew that she would bury herself into religion and follow the course her parents taught her. And she has a lot of support from friends. But I had built, what I thought were genuine, unconditional friendships over the 7 years I was a member of that organization and it almost killed me to leave behind, people whom I associated with regularly and did many great things with it. I must stress to you that when you are a JW and you leave to pursue a ‘disgusting’ way of life, you are shunned. I was instantly dropped like a sack of potatoes from the lives of people whom I thought were my friends. I even had two people I viewed as my parents who have not spoken to me since that day. The pain I have in my heart is great, and it still bothers me to this day, which is why I thought I should write about it. The love I was shown by fellow members was conditional to one thing; that I continue to live a lie and do as God expected of me.

I remember the pain I felt driving away from my home, never to return to the life that I so desperately loved yet so desperately hated all at the same time. But I was tired. I was tired of hiding. I was tired of judging. I was tired of seeing the hypocrisy and the  twisted things that happened behind closed doors that rather than bring me closer pushed me so much further away. I don’t miss the half-hearted smiles of genuine Christians who pretended to like my all because it would affect their status in the congregation. But most of all I was tired of hating myself.

I want you to stop for a moment. Imagine you’re looking in the mirror. You are all dressed up to go from door-to-door and you slap a nice smile on your face, like butter wouldn’t melt in your mouth. But when you look in your own eyes, all you see is sadness. And you see a light that is burning, but only by a thread. Imagine looking at yourself in that mirror and saying ‘
I hate who you are’.
That was my pain.
That was my reality.

I became so sad that it left me wanting one thing; to die. And I almost did. If I didn’t succeed in taking my own life then I would surely die of a broken heart. And thank God neither of those things happened, though I was very close to the first. In my darkest hour and the lowest of my lows, I reasoned with myself and with the God who I believed in. “I would rather die a thousand deaths at the hand of my creator, than to live one more day in the life he made me to live and be so miserable. If God is love, then God did not want that.” They would tell you that that’s the devil talking and that I was justifying my unclean lifestyle. But you know what? I don’t care anymore. I am the only person who will have to be accountable for the way I live my life, and I don’t think any human being has the right to tell of make someone feel that the way they are living isn’t good enough. It was so exhausting judging people and looking down on everybody but myself. I think of all the time I wasted!! It makes me so sad. I try and live with no regrets and somehow pray that that whole experience made me a better person somehow. I still believe in God, I have to. It only makes sense as he is the one who helped me get through all of this. And it’s funny how it’s working out because when I practiced a JW way of life, I always felt my prayers were unanswered, but now that I am ME, it’s like every single one gets answered.

I have a freedom now that none of you reading can understand. I was a mighty lion, destined for greatness trapped in a cage. Now I am free to roam and leave my mark behind me and touch people’s lives in ways I never could going door-to-door with a bible. I am living a good life by example and not one according to someone else’s rules and agenda.

I didn’t write this blog to turn you all against JW’s, and I believe there are good people in all religions. The two people I mentioned being like my parents are two of them. I needed to let this go, and this is my way of doing it. Writing down for the world to see, in hopes that the darkest most desperate pain I felt can be of light or courage for another. My heart is happy, my health has improved and I am content with who I am. I still have my sad days when I miss people from my past I wish would still talk to me, and see that I am not evil, and I am not something to be looked down upon. I am a human being not an animal. What makes me even sadder is that when I left to pursue my new life, I had four Jehovah’s Witness males contact me. Each one in their own way told me they admired my courage and that they too were gay. But their fear of disappointing God and their fellow believers ruled over their hearts.  I pray every day for them and hope that they can find it within themselves to embrace reality, and not live in a dream world where they feel inadequate or demonized.

I walk into my bathroom every morning now. I look in that mirror and I tell myself that I am beautiful. I tell myself that I love myself. And I smile from ear to ear, with a heart full of gratitude that I was one of the lucky ones. I was able to find myself after almost losing myself. I see a light, not a darkness in my eyes that fills me with so much joy. But most of all, I am no longer in conflict within myself. I am happy. When I say I’m happy, I mean I am happy. No more lies. Only truth. The whole truth and nothing but the truth so help me God.


“Darkness cannot drive out darkness; only light can do that.Hate cannot drive out hate; only love can do that.”
~ Martin Luther King Jr.

“I have decided to stick with love. Hate is too great a burden
 to bear.”
~ Martin Luther King Jr.

Peace and Love,
Jamie Leigh Francis
xo

Thursday 29 November 2012

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

Tuesday 20 November 2012

"Can you imagine that kind of love?"


A few weeks after we met...

"Can you imagine that kind of love?”

Imagine meeting someone. That someone has a life threatening illness and could literally die any day. You’re scared, you don’t know what to think or feel for that matter. You realize that this could be ‘the one’ but yet you’re afraid to feel what you feel because it could lead to you being hurt, or even worse have to live without that someone who oddly enough has never made you feel more alive. You take a risk. You press forward. You grow to love that person and see beyond their sickness and love them unconditionally and live with pain every day, wishing that you could remove the dark cloud that hovers over your lovers head and plagues them as the sun rises on each new day. You no longer care about neither the future nor the outcome, because life without that person would be worse than not have given them the chance and experience a love like no other.

Can you imagine that kind of love?
I’m lucky.

My blog has been an avenue for me to express my feelings and thoughts about life, love and living with a terminal illness. The response I have received is overwhelming! I always appear to be so strong, always ready for today’s challenges. But what people forget sometimes is that there is someone behind me cheering me on in the bleacher who often gets overlooked. That person is Perry, the love of my life! It’s easy to look at me and say, “Wow, I don’t know how he does it….living each day knowing that today could be his last day….”, but Perry is going through this journey just as well as I am. In fact, he is facing maybe even a harder battle, knowing that all the effort and time and energy he is putting into this, our relationship (which is an absolutely beautiful one at that) could all vanish at any moment. People tell me all the time how much courage it must take to live the way I do, so optimistic and outgoing. But is it not equally if not more courageous for someone to love someone in such a condition. To take on, what I feel, is such a burden? People are always calling me the hero…but Perry is my hero.

I had myself convinced after leaving my wife and having several bad relationships that I should just live and die alone. I had given up on the thought of ‘true love’ and just figured there was no fairytale for me. But then the most amazing thing happened.

I ‘met’ Perry on POF (Plenty of Fish). He messaged to me to see what I was up to. I told him, “Well, I’m in the hospital.” To which he replied, “What hospital?” I thought to myself this guy is either crazy or the Romeo that I had been praying for. I informed him that I was in the Health Science Centre and he then asked if it would be ok if he came to meet me. I panicked…. I had recently been admitted and was in no way ready for company. I was feeling like a bag of shit and just wanted to be alone. But at the same time, I couldn’t help but let my heart wonder if this was something. I already told him about my having Cystic Fibrosis and yet he still wants to meet me?! Most guys I meet and inform them about my illness run as fast as they can in the opposite direction. But this guy….well he is running right to the heart of the storm! So I agreed to let him come and meet me. I then thought, crap! I need to make myself look my best, fix my hair, actually get dressed, and freshen up. But then I had a thought. If this guy is ‘real’ and really looking for something, something that I knew could be beautiful, then he is really not going to care about how I look. He will just want to be here.

As he walked in the room, I was 112lbs, covered by a light sheet and looked like something who should be saying goodbye rather than saying hello. It was strange how well we hit it off. We talked like we had known each other for years. In fact, my physio therapist asked who my friends were, and when I informed her that we had just met, she was shocked. She said that she felt like she walked in on people who had known each other for years. After about an hour, he left. About five minutes past when he texted me, “Would you mind if I came back to see you next weekend?”
J
I thought, ok. This guy is definitely crazy! To want to come back and visit Casper the friendly ghost is nothing short of amazing. And come back he did! The next weekend and then the weekend after that and continued to come back to the hospital for the next 9 weeks, when he got off work for the weekends. His abnormally large heart looked beyond the IV polls and the ventilation masks and oxygen tanks. He say me. Not my CF, but who I truly was as a person. After we started to get close and both realized that this was heading somewhere and fast, I asked him why he did it. Why he came back weekend after weekend and just showed such extreme compassion. His response? “I’m not going to not be with you just because you are sick. You deserve to be loved as well as anyone else, if not more!”Romeo!?! I think I found you!

Even though I am the one going through this, Perry is the one watching me, holding my hand reminding me that all is well and that I will be ok. And even though we are both realistic and know that the end of this story may not be a happy ending, I know in my heart there is nowhere that man would rather be than by my side. The beauty in our lives is something a lot of people would not understand and the love we have for each other is something out of this world. It’s like the world stops moving when he looks me in the eyes and tells me how much he loves me. I feel like superman who can concur anything and everything that steps in my path.

Can you imagine that kind of love?

Almost a year has passed and our relationship continues to grow. We are busy planning our wedding. Something I never thought I would live to experience again is another wedding. But it’s happening. To a man whom I do not deserve. A man who reminds me what it truly means to be an inspiration. He has sacrificed a lot to be with me, even losing some close friends who don’t understand our decisions and way of life. In my opinion they are intimidated by what we have and cannot comprehend someone experiencing such happiness. He has sacrificed time, energy, resources and is willing to do anything for me. To go above and beyond what’s expected of a lover is what he has done and continues to do. He may not ever understand my gratitude I have towards him for ‘taking me on’, and learning to love me, but I plan on spending the rest of the time I do have with him showing him.

To know that I don’t have to face the future alone is something you cannot even imagine. To know that I have a soldier by my side who I know will be there no matter what is a sense of security no man can understand unless you are going through something of this nature. Perry is a source of strength to me that no needle or treatment could even give. He truly makes me believe that ‘love can move mountains’ and I am forever grateful for his love!

Dear Perry,
I know it’s not always easy, and I know I can be a challenge to live with at times. But thank-you! Never do I want you to feel like your efforts and love go unnoticed, because they are! Each new day where I have you by my side is another day I can truly say I am happy. I can only hope that I give you even a tiny fraction of that happiness. You truly are the love of my life, and without you my life would lack meaning. You give me a reason to keep fighting, keep growing and keep strong on this journey. You’re my hero. I love you boo!

Forever and always,
J
xo

So now you know that behind me is a stronger man than I ever will be. Someone who is so willing to take on this battle with me, and help me fight till the end. Someone who is willing to sacrifice his own happiness to see me smile.

Can you imagine that kind of love?


Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth.  It always protects, always trusts, always hopes, always perseveres.

Love never fails.

 ~1 Corinthians 13:4-8


Peace and Love,
Jamie Leigh Francis
xo


 

Thursday 15 November 2012

A hard lesson



A hard lesson

I would like to dedicate this blog entry to a dear friend of mine who has Cystic Fibrosis who will remain nameless. I pray that it may help you realize just how beautiful life can truly be.

What child or teenager wants his friends to know that he has a disease? A disease that robs you from a lot of independence and may put you at risk for being bullied or even neglected at school. Nobody wants to be considered “different” or a “freak” in this world, so letting people know that we have an illness, something that we actually have no control over, can at times be very overwhelming to deal with and most of us just choose to keep our problem to ourselves. In fact I know a couple of CF people who went through all of the school system and never told a soul they had CF, and now wish they had, as they could have used the extra support. The problem with not telling anyone is that we are more inclined to experience peer-pressure to try certain things that people with CF just shouldn’t try. Binge drinking and casual drug abuse can prove fatal to someone with the disease, a lot sooner than later.

I was very fortunate to have a mother who taught me to be open and honest about everything in life. I never kept my disease a secret and to be honest, often used it to seek attention or avoid being bullied. “Don’t pick on me, I’m the sick kid! Remember!?”
All my friends knew about my CF, and though they may not have understood what it really was to have Cystic Fibrosis, they never made me feel strange or different for having to take pills at lunch time. Or use the bathroom more than a normal human being should have to use the bathroom! But not everyone is blessed to have had such a great support system at school. To this day those girls still under estimate how easy they made it for me, and how comfortable I felt being myself in front of them. My true self. The self that had to take puffers and pills during recess and lunch. I can’t imagine having ever gotten through without the kindness of those girls.

Cystic Fibrosis is a progressive disease. What does that mean? It means the longer we live the harder it gets. The longer we live the harder it is for our lungs to operate properly. The longer we live, the higher the risk of dying. Sounds silly hey? Obviously the longer you live the closer you are to death. But ‘normal’ people’s reality is not to die before the age of 40. Cystic Fibrosis is also a disease that your longevity truly is in your own hands. It’s simple; if we don’t take proper care of ourselves, we die. We are taught this from a very young age, and we are reminded frequently when we have our quarterly check-ups with the CF team. Death is something introduced as a young as when you have CF. And sometimes it causes some CF sufferers to do crazy things.

My biggest regret in life, actually let me rephrase that as I do not believe in regrets. But what I WISH I HAD DONE DIFFERENT when I was younger was care for myself the way I was supposed to care for myself. I’ll give you an illustration. You go to Wal-Mart and you buy a bread pan. (The bread pan will symbolize the lungs of a person suffering from Cystic Fibrosis) When we are born, we have a new bread pan. No dirt, no dents, just a new bread pan. Every time we get an infection there is a certain amount of damage that occurs that we can never get back. So we take a hammer to our bread pan and infection after infection we put dents into that pan until there is no room left in the pan. That’s the nature of my disease. So every time I get the flu or a cold, another dent. Every time I hospitalized, an even bigger dent. You often hear me talk about on my Facebook page my FEV1, or my lung volume. Well, that percentage is what’s left in my bread pan. Currently mine is around the 40% area. So essentially I am using 40% of my lungs. However, daily cleansing of our lungs via physiotherapy and medications can help improve the lung function and prevent infections from occurring.
As a young teenager I didn’t want to hear talk of doing my physio or taking my pills. It was all too much for a person of my age to be doing. I had friends and other interests that I wanted to occupy my time. And rightfully so. What child wants to stay home from the dance because it won’t allow him time to care for his disease!!!

Had I cared for myself the way I should have, who knows how much better health I would be in today. I cannot worry about that. What I can worry about and do have complete control over is what I do today. I have been given a gift. A life. And my existence here is dependent on how precious I view that life and how important it is to clean out the insides of my body on a regular basis. You know what, sometimes CF is a royal pain in my ass. I do hours of therapy per day as well as take 50+ pills just to survive. BUT   I AM SURVIVING. We often times spend so much time complaining about our lot in life, that we forget to take the time and think about the blessings we have. I could have been born in a third world country when the survival rate right now for someone with CF is still 7 years old. I am able to have quality health care and a team who are 100% focused on making sure I am the healthiest I can possibly be.
So what’s my message to kids and young adults out there battling CF?
It’s this;
Don’t be an idiot. Learn from my mistakes. When you get to, (if you make it to) your mid-twenties, you will realize how much your mother was right. How she only wanted the best for you and for your life to be as long as it can possibly be. You think it’s cool to fit in with your friends and smoke weed every once in a while? Well how does sleeping inside a coffin forever sound to you? No doctor I have met yet said that that kind of behavior is acceptable to someone with CF and I challenge you to find one. If you are stubborn and fail to care for yourself now while you are young and in your prime, you will forever wish you had done things differently. I am facing death now, was it because I didn’t look after myself when I was young? Who knows. But I do know that I wish someone could have given me the slap in the face I needed to wake me up and realize that though this life sucks a lot of the time because of our having Cystic Fibrosis, this life can be beautiful. And will be if we make the right choices. So smarten up will ya!? You have a lot to offer this world. Just make sure you give the world their max time to realize it!

If someone had to have been able to show me how beautiful, wonderful and awesome my life is right now when I was younger, I would have done everything in my power during my youth to ensure that I could have just one more day. Don’t take life for granted. Be grateful for the gift of today. If you’re scared that by you taking care of yourself properly is not going to make you blend in with your friends, let the fear of dying young be a greater fear. If you are worried that taking care of yourself may rob you of a lot of the joys normal people have, let the worry that your loved ones are going to have to face not having you around.


What makes us weak, is what makes us powerful! And with the proper attention given to our illness we can not only lengthen our lives, but we can ensure that we will not die before we have to. We can ensure that we will live a full life, one filled with joy, happiness and above all, LOVE.

I hope this blog entry has awakened in you a fire to take better care of yourself. Talk to your local CF team, tell them that you are ready to make a change. They will do everything they can to help you out. But it all starts with YOU! Until next time my friends……


“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying ‘I will try again tomorrow’” ~ Mary Anne Radmacher

Peace and Love,
Jamie Leigh Francis
xo


Thursday 8 November 2012

I surrender



I surrender

Sometimes I feel like the biggest hypocrite when I write my blogs. I preach on here all the time how important it is to live a life of gratitude and to count your blessings and how it’s all about the little things in life. But sometimes, in the darkest moments when I am one with myself, my reality becomes unbearable and I just have to surrender to the pain of my reality.

I consider myself to be a far better person than I was in my ‘former’ life. I try to be kinder to people. I try and extend my hand whenever I can and be a good neighbor. I try and reach out to other people with CF and see how I can be of support to them in their own battles with this horrid disease. I try and be the best partner I can be to Perry, giving him all the love I can and never allowing him to feel alone in this relationship. I try so hard to be a good brother, though at times it is hard to connect with my two sisters who live miles away from me. I try and be a good son, though right now that is not going so well. I try and be a good human being, always trying to do the right thing and do onto others as I would like done on to me. And even though at times I admit, I am a hero to myself in my own little way, there are parts of me that I cannot stand. Parts of me that I wish were tiny fragile hairs on my arm that I can just pluck away in an instant.

I’ve been struggling a lot lately with how things are ‘suppose’ to be. How I’m not supposed to have CF and be facing death at the young age of 25. How I don’t have the dream career any other young man would have, filled with courage and piss and vinegar. How I’ll probably never have the white picket fence that everyone dreams of as a child watching blockbuster movies that portray ‘the good life’. How I am not supposed to be a burden on the man of my dreams, both emotionally and mentally and how we are supposed to grow old together and watch each other get saggy skin. 

We as human beings have this built-in hard drive of how things are supposed to go in our lives, and if things don’t turn out the way we planned, we feel that life is being unfair, or that we must have done something wrong to deserve this ‘bad karma’. But in actual reality, are our paths here on earth predestined? I think not. And if so, why would God have given us the beautiful gift of free will? And I just don’t like to think of God as a spirit creature who would enjoy or cause someone to have Cystic Fibrosis and have to face things no man my age should ever face. But see, there it is again….who’s to say I’m not supposed to face this? Maybe this is my purpose here. Maybe I am meant to have this disease and have had the hardships I have endured to be a guiding light to people. Maybe my purpose is to be writing this blog right now so that someone somewhere may benefit from it in ways I would never imagine.

You know what, it freakin sucks to think that maybe I will never be able to be a home owner with Perry, but is that really what’s important here on this journey? Am I reaching another low in my life where I am forgetting the purpose of all this? I think maybe I am. And as the tears run down my face tonight and I prep myself for another sleepless night, I can’t help but feel ashamed of myself for feeling this way. I have been given the gift of today……a gift someone else didn’t get the privilege to enjoy. And I am going to spend it on throwing a little pity party and feel sorry for myself for my lot in life!!?? Wake the hell up Jamie Chafe. You are better than this! But at times the reality is so strong and so powerful that I just have to surrender to it, for after all I am only human. And who doesn’t want to have the opportunity to live a full and rich life. But who said a full and rich life had to consist of 70 or 80 something years. I know a lot of people who lived to be that age and did nothing with their lives. What did they do? They sat around and threw pity parties all the time for their lot in life. I don’t want to be one of those people. I want to be known as a light to people. Like a lighthouse on a coast, on a dark and stormy night that helps guide the seamen home.

All I’m trying to say is, that sometimes, it all becomes too much. And you just have to break. I’m happy to say that I have returned to counseling. And I have no shame in that. I am someone with a lot of shit going on in my life, and sometimes it helps having someone else there to give a fresh perspective. Or someone to just say, “I hear you, and I give a shit!” Because often times, I feel alone in this world. Like no one really ‘gets me’. I’ve learned that it’s important as human beings to feel whatever it is you need to feel. And to embrace the emotions that enter your heart for they enlighten your soul. How else can we grow as human beings, as spiritual creatures unless we learn how to rise from the ashes of our circumstances and welcome pain and suffering in our lives with open arms. For when we do so, we really have nothing to be afraid of. And when we do so, that’s when we can say we really grow as human beings.

I’m not saying I’m giving up on my hopes and dreams. That’s not it at all. It’s just sometimes it gets a little exhausting being trapped in a reality you often times can’t see your way out of. And you question sometimes what’s the meaning of it all. But this blog is called Jamie’s Journey after all, and tomorrow is another day. Another day that is going to be filled with a new set of problems. But today made me stronger to face my tomorrow. And perhaps tomorrow I’ll be a hero to myself once again.

To the lamp of love, may it burn brightest in the darkest hours and never flicker in the winds of trial” – Author Unknown

Peace and Love.
Jamie Leigh Francis
xo

Monday 5 November 2012


Facing my own Demons


Facing my own demons

I feel like I am stuck in a place, a dark place, as I continue my transition to being a better human being. Since I was a child, I have always had this inner ‘Satan’ that I have hated, but always seemed to show his face at the most inappropriate times. It is now that I am a man, I realize that “Satan” is really Anger.

I remember being so young as six years old and wondering about why ‘God’, whomever that may be, would want me to suffer when all the other kids around me appeared to live a normal life. This has been something that I have struggled with over the years. Then, why would ‘God’ whoever he may be want me to not only suffer from Cystic Fibrosis but want me to be raised by a raging alcoholic father. Why on earth then on top of that would ‘God’ whom I was really starting to dislike, make me be a victim of rape at the age of 10 years old. On top of all of that was my inner demon who I now consider my own angel, my Gay self, that I struggled for so long accepting and was angry that I couldn’t just shout out to the world, “I AM GAY!”

Anger has robbed me of so much joy over the years, and I am only starting to see that now as I continue on my journey and face new challenges every day. There was always that darkness that plagued my days with an inner frown that was not able to be released. It is only now from reading literature such as self-help books that I am really learning the importance of facing that anger, and getting to the root of where it comes from and minimizing it as quickly as possible. Especially for someone like me who has a terminal illness. When we are stressed and have anger inside, doctors have proven that it can have a negative effect on your immune system and could cause harm to your overall health.

Six time Grammy award winner, Adele, thanks life every day that she went through hard times. She vows that had it not been for her idiot ex-boyfriend, No.1 singles like ‘Rolling in the deep’ and ‘Someone like you’ would not exist, which as we know landed her on the global scene of success. But the difference between me and Adele, besides the fact that she has a vagina and I have a penis, is that she learned to use her anger for the good. What power! To turn anger and emotion into such beautiful song lyrics! Now I’m not telling you all to look out for my name flying up the chart’s anytime soon, but isn’t it amazing how some of us ‘get it’ and some of us, like me, don’t!

I recently read a book called, “Enjoy Every Sandwich”, which I highly recommend by the way, and in it there is a chapter called ‘Digging in the Dark’ and I swear it was meant just for my soul. It talks about how most of us are scared to face the darkest places within ourselves in fear that we may have to admit to imperfection, but that doing so can release you to a life of joy and excitement rather than one of anger and guilt. My anger tends to come out towards others when they say and do things that truly upsets and hurts me, though maybe not intended. Lee Lipsenthal writes; “I try to see myself in the other person’s shoes and mind and try and see why people feel the way they do. It may not resolve the issues at hand and I may not approve of the choices the offender has made, but I am able to generate compassion toward that person.” Is that not beautiful? My Aunt Heather tells me all the time whenever I tell her about how someone has wronged me or has disappointed me in some large way, “Did you pray for them?” WHAT!?!? Did I pray for them!? Are you kidding? They are the ones who are causing my life to be a living hell and you want me to pray for them!? It may sound extreme, but this has actually released my anger in a matter of seconds. When we realize that we do not need to take ownership of other people’s actions, that’s freedom! I heard an illustration once; holding onto a grudge is like taking a daily dose of poison, the only one it is going to effect is us. The other person doesn’t care that you are harboring resentments towards them, nor do they probably even realize it! So instead of letting things eat away at us and fester inside, are we not better off releasing our anger into the world and let karma or God’s good graces to handle it?

This has all hit very home to me in the past week, as I was released from my job. It is the first time ever I have been released from a job from anywhere. I was humiliated and disgusted at how manipulative the new manager was to have caused me to be dismissed from my employment. And even though she said on the phone it was because of my health, I know that this was only an excuse to give me as she herself, the owner felt bad for making the decision. The owners of the restaurant have been very supportive of my health issues since I started there, even allowing me to place a glass bottle for donations at the front of the store counter. But what did the “Satan” inside do? Took it as a personal attack, allowing myself to go so far as to experience a severe anxiety attack and have to be brought to emerge to settle me down. But was the manager in dismay? Probably not! I was allowing her actions to cause me so much pain and heartache that it was actually making me sick. Again, taking that daily dose of that delicious poison! What I have learned now that the dust has settled is that, I am powerless over other people’s actions. 100% powerless. And I cannot allow these people to make me feel like I am an insignificant part of this world. What I am going to try and do now is pray for the manager. Pray that she finds help to heal herself of her own demons and maybe not treat others in the way I have been treated. This all started over me speaking out to the owner about concerns I had, and then she came after me for revenge. But what she did is her business and she in the end will be accountable for it when we go wherever it is that we are going. Fred Luskin of Stanford University suggests that we “Forgive and Remember”, not forgive and forget. Forgive and move on with your life, yet still being cautious of repeating the same mistakes or allowing ourselves to be put in those types of situations.

I’m certainly not perfect. There are demons inside me and inside all of us that we wish we could just cover up with a nice thick blanket. But by facing these human flaws, it will allow me to continue to grow into a better, more decent human being. Expressing compassion for others when we are inclined to hate on them is power. Not power for them, power for us, because we are choosing to say no to our inclination to spread hatred and anger in this world. Instead we try and show a little bit of love. I’m not saying that it is easy to not allow ourselves to become worked up when someone has done wrong by us. It’s been a week since I was let go wrongfully from my job and I still have to take an Ativan and a Gravol to try and help me get myself to sleep after I cry and contemplate what I could have done different. But at least I have released myself this day of the tensions of this day. And tomorrow is a new day. A day in which I can wake up happier and able to face the next set of challenges of Jamie’s Journey.


    “Living involves tearing up one rough draft after another”
                                          - Author Unknown

Peace and Love,
Jamie Leigh Francis
xo



Friday 26 October 2012

FOUND


Found

I have been trying to understand the phycology of it all. Why we allow other human beings to bring us in the dark hen we are striving to live in the light.  Why we allow them to fill us with so much anger, so much darkness and sadness. Why we allow their opinions and close minded statements to rob us of the joy we seek to have in our lives. Last night was one of the worst nights I have had in a very long time. But what hurts you yesterday makes you stronger today, and this is what I have gained.

I’ve learned over the past year that no matter how one choses to live his or her life, there will always be people who do not agree with what they are doing. There will always be those who think they can do it better. There will always those who feel that if we lived by their ways and their rules that our lives would be better; more fulfilled. But since when did anyone have the right to tell us that what we are doing isn’t good enough? And since when did we allow others to dictate what is right and what is wrong. For what is right and what is wrong varies for each person. But I am not willing to waist all of the efforts that I have put in to ensure my happiness with myself and my being with Perry, to let a few people who are ignorant to cause me pain and upset when really they don’t care.

I got an e-mail last night from someone from my past, whom I want to remain nameless as I fear someone will want to kill them after reading this. She has been reading these blogs and felt the need to tell me that I am a ‘self-centered, ego maniac who feeds off attention from others.’ Someone who ‘doesn’t deserve a second chance at life because you have messed up the first one’. She felt that it was important to ‘bring me down a few notches’ and open my eyes to reality and inform me that I need to start appreciating the things I have.

I cried for an hour upon reading this.

That combined with an argument with a guy about a stupid Facebook status that I had that he over analyzed and made me feel like a piece of shit, combined with stress and not knowing how to deal with my emotions about transplant lately and then top it all off exhaustion from trying to keep up the pace at work while dealing with weak lungs. Needless to say, especially after last night’s blog post, I snapped.

I don’t know what it is that makes me so sad when someone says something to me. I don’t know if it is from being abused by y alcoholic father as a child, not sure if it is from being bullied at school, not sure if it was from all the brain washing I experienced when I was a Jehovah’s Witness and maybe I was afraid that some of that was creeping back in to my life somehow, but I do know that it triggers something very evil in me, and I don’t like it. I don’t like handing over that kind of power to people, the kind of power that has destructive forces and can cause a lot of damage to my soul, and has done so. Last night I actually allowed myself to question whether or not I was a good person. Made me question whether or not I deserve a lung transplant. Made me question whether or not I deserve to have Perry’s love in my life. I allowed that to happen.

I have preached on here time and time again that life is all about attitude. And how we react to things, yet last night my ability to control that aspect of life simply vanished. I was brought right down to the pit where all I wanted to do was scrape some dirt in on top of me until I could no longer breathe. But I allowed this to happen.

I have learned from talking to my shrink and my social worker that jealousy is a root of a lot of evil in this world. A lot of people have a hard time seeing good things happen to others, especially when their own lives aren’t so peachy. They tend to pick on the imperfections in someone else’s life rather than face their own demons. I have a lot of attention around me right now and a lot of positive energy, very positive, and a lot of people just can’t deal with nor accept that. They need a little bit of that energy themselves and feel the need and simply insist on trying to rob some joy from others by saying or doing something that they know will hurt someone else. BUT. It can only hurt us if we allow it too.

We have two choices when confronted with negativity; we can either react or we can ignore. Sure the imperfect human in each of us leans towards the first, react. Who of us wants to be hurt or saddened by someone else’s actions or comments, so naturally our instinct is to either put our claws out and attack back, or ball up into a corner and throw a huge ass pity party. BUT! What about if we didn’t react at all? What about if I learned to not give, or allow the other person to have so much power over me that I chose to say, “NO!. I am not going to let this bother me!” By choosing the later we not only send a message to our attacker that they have no power over us and cannot bring us down from the glorious clouds in which we are so happily residing, but it also strengthens us for future blows, to make us stronger in dealing with more assholes that will come our way.

All I know is I hate feeling as low as I did last night. But I also know who I am deep down inside and I know that I don’t deserve to give these people my time and energy when I have SOOOOOOOO much positivity surrounding me on a daily basis. Why is it that we so quickly focus on the darkness when there is so much light? All I know is I am going to try and make sure that never happens again. I know that I am a good person at heart. I see it through the miracles that I have witnessed in my life, Perry being one of them. We have so much love between us, it’s remarkable and makes me believe in ‘meant to be’s’. We have so much positive things to look forward to as well, like our wedding day is approaching and there is so much planning and good things to come. We have the most amazing friends around us who make us feel so much love even though some of them have to love us from afar. And above all, we have the gift of Today! Another day to enjoy on this beautiful earth that God has been so kind to give us. It’s true what they say, today is a present, because it is a gift from above.

So the next time some idiot who thinks they know it all tries to rain on your parade and make you feel like your bellow insects on the totem pole, just ask yourself; “Am I going to allow them to bring me down? Or, am I gonna show them who’s in charge of my own life and say NO, you can’t hurt me!” Because that’s what I’m sure as hell gonna do!

 “Put your ear down close to your soul and listen hard.”

~ Anne Sexton

Peace and Love,
Jamie Leigh Francis
xo

Thursday 25 October 2012

LOST

LOST

I’m finding lately it’s getting harder and harder to wear my ‘mask’ of someone who is doing so well, yet inside I am falling apart. I’m really starting to question my purpose here, and I’m finding myself confused about what I thought was reality, turning out to be not so real.

At my place of work, the owners allowed for a jar to be placed at the front counter for “Jamie’s Journey”, for my transplant, an extra way to raise some money. A lot of my customers are surprised when they learn that the Jamie talked about in the short paragraph attached to the bottle is actually me. They see what appears to be a well-kept, healthy young man. It’s the most frustrating thing about having this disease, is that people just don’t understand how not well I actually am. Sometimes I wish there was a hidden camera in my home so that people have to see what I have to go through just to go out and face the world on a daily basis. Not because I want attention, but beg for compassion. When you are operating on less than half of your lungs, it makes daily living, the simplest of tasks to be like climbing Mount Everest.

I am so grateful thought to be able to push myself right now. By rights I should be home resting, and taking care of my health to ensure that nothing happens before it needs to. But I find pushing myself that extra bit helps me stay real and focused. It also helps me emotionally, being able to go out and mingle with people. Being able to provide good service to people in a restaurant brings me a measure of joy and happiness. Makes me feel like I am needed somewhere. But I do get tired of always having to pretend. Sometimes I just feel like lying on the floor and giving up just to make people realize how much this sucks sometimes. I hate to sound down in the dumps, because I am usually so positive, but sometimes you need to just vent.

On this blog, I seem like such a positive guy, who has his shit together, but to be honest sometimes I just feel like I am about to fall apart. This past few months has made me question everything. Who I am….Why am I here….and Why certain things happen the way they do? I don’t have a lot of time to wait for the answers and sometimes I get so impatient that I just want to know NOW! I am questioning whether or not I am a good person. People have said and done some pretty cruel things to me over the past little while and I am wondering if I deserve it. Am I missing something? I thought people who claimed to love you would be there despite whatever. Is love losing its meaning? Is love something that people can no longer hold sacred and commit to? Because when I say I love you to someone, it means that I am willing to accept their flaws and help make them a better person. Not kick them in the head and spit on them when they are on the ground. I’m confused in my own mind how people tell me on Facebook time and time again how much of an inspiration I am to them, yet, I get people inboxing me and telling me, and saying the most inhuman things that I question whether or not I deserve. Again, I come across as this guy who got it all figured out, but lately, I feel like I know nothing anymore. I am trying my best to be a decent human being and I just feel that lately some people would rather see me dead than to just show some compassion, and even if they cannot do that, I would just like to be left alone. And things that you want to say, if they aren’t positive than please, I beg you, just keep them to yourself. I’m trying so hard to just stay strong and keep my spirits up knowing the days ahead are going to be hard, but sometimes I question why I even bother. If so many people out there think I am a  bad person, then should I really be asking people to help me to save my own life. Or is it best to let nature take its course. Am I not worthy of an extended time here on this planet?

Lady GaGa said how would she not appreciate her fans if she didn’t have h8ers? And I see her point. And I want you all to know that I do appreciate so much your love and support. From those of you who build me up with kind words and say the sweetest things to me, thank-you from the bottom of my heart. It’s just that lately I’m overwhelmed with people saying just the cruelest things to me. And unfortunately because I am human, sometimes the little bit of bad outweighs all the good.

I just want to be a respected person, someone whom people will say after I am gone; “Jamie was such a sweet guy, someone who will be missed”, but lately I just don’t know.

It’s so hard holding all your emotions in; wondering if tomorrow will be there day your lungs decide to fail, if tomorrow you will be faced with death, if tomorrow you will have the strength to wake up. And just this extra garbage, is sometimes a little bit too much to bare. All I know is that I am just being me, and if that’s not good enough then I don’t know what else to do.

For now, I’m off to bed….. maybe rest will help me think more clearly…..

Peace and Love,
Jamie




Tuesday 16 October 2012

HIGH expectations; BIG disappointments


HIGH expectations; BIG disappointments

When you live with a terminal illness such as Cystic Fibrosis, from a young age you develop this mind set of how life is supposed to go. How people are supposed to treat you and how they should be expected to show a measure of compassion, because after all, you are a sick person. You expect because you are ill, people would be careful as to not hurt you, or cause you any more anxiety because of what you are already facing in your troubled life. Turns out, none of it really matters.

Just because I am sick, does not give me the right to expect people to treat me a certain way. With that said, I have been the beneficiary of some extreme compassion and love shown to me by people all across this nation and abroad. But I am finding it very difficult what a “friend” behaves in a way that I feel he or she should not behave, because I expect better. We so quickly forget that they too have limitations and that they have things going on in their lives that I may know nothing about, or things that are causing them to be limited in the way they can express fellow feeling to others.

When this whole transplant thing started over 8 months ago now, I never thought I would lose friends, or even family for that matter because of the ins and outs of dealing with this kind of traumatic thing I will have to face in the near future. I just expected that everyone would be there, come hell or high water – they would be there. But that is not the case today. There are certain people in both of our lives that we never thought we would lose during going through such an experience as this. But the only reason why we were surprised is because we expected them to be here through everything. Had we not set that expectation in our head, we would not feel so sad about it. Many people are capable of different things; a lot of people can’t handle to emotions involved with something like this.

It’s also important to note that we cannot have expectations of others until we analyze what other people expect of us. That would be hypocritical. Often times, especially lately, I’m finding it better to just not have any expectations of anyone, that way I don’t end up sad and upset. At one of the latest fundraisers I had, someone asked me if I was disappointed with the turn out, I said ‘no’. Because I never had any expectation walking in there, therefore whoever came I appreciated and those who didn’t I tried to tell myself that they must not have been able to attend and that was that. If I expected 250 people, and 50 people showed up, can you imagine how disappointed I would have been, therefore NO expectations means NO disappointments.

Not having high expectations in life also leads to a contentment that cannot be expressed with words. It gives you a confidence in knowing that those who are in your life are meant to be there and those who are no longer present, really weren’t meant to leave a mark on your life. It allows you to expand on the relationships you have knowing that they are genuine and that the other party has your best interests at heart. This day and age people use to term ‘best friend’ way to loosely. They say “OMG, she’s like my BEST FRIEND” and then 5 minutes later that same person will say the same thing about someone else! Isn’t that putting a lot of expectations on an awful lot of people? What is a best friend? It is someone who understands you as you are, accepts your limitations and flaws but still loves you anyway. I’m sure not every person in your life is THAT person.

It’s also important not to place too many expectations on ourselves. I always expect myself to be so strong, like a superhero to others. Not let them know that at times I cry myself to sleep because I am so scared of what’s about to unfold. How I scream out the lyrics to really sad songs to help me deal with the downfalls in life. How I literally have to tell my mind to stay awake when I am in the middle of a coughing fit because I don’t want to pass out or have to sit down in front of others because maybe then they would see just how fragile I really am. I have CF, and sometimes I forget that. I think I need to be superman all the time and not have moments of weakness to remind me of reality. And it’s tiresome sometimes to always be so strong. People tell me all the time that they would never have guessed that I have CF just by looking at me. The reality is that we as human beings are only capable of so much even if we don’t have a terminal illness. And it’s very important that we realize that, or else we will burn ourselves out and be useless not only to others but even ourselves.

The part that I hate is that I EXPECT Perry to know what’s on my mind at all times, and I often close down in front of him because I don’t want him to be burdened any more than he already has. He has entered my life and has fixed so many things and has healed me in ways that no doctor ever could. But yet, I sometimes forget that he is only human too. And to take on someone who has a health condition such as mine if something to be awarded in itself, yet he seeks no honor for his role. He is just happy to be able to be here for me and has promised to be by my side through all of this come hell or high water. But even he has limitations and sometimes I forget that I may be exhausting him with everything going on in my life and in my mind and the needs of my body when it comes to him helping me with my therapies. Communication is so important in a relationship and I am so grateful to have that with him. He not only hears me but he listens and I try to do the same. We have little tiffs here and there but never have we had a heated argument. And the reason why things are going so well is because I have no expectations of him. He has graciously and willingly entered my life and has vowed form day one to not go anyway and stay with me, even if that means holding me in his arms as I take my last breath.

He is my hero.


This life is such a beautiful journey, is it not? And we are all learning. I hope that this made sense to you….. it has helped me a lot!

“Blessed is he who expects nothing, for he shall never be disappointed”
 ~ Alexander Pope


Peace and Love,
Jamie Leigh Francis
xo