For the past few weeks, I’ve been looking for some guidance some extra light to inspire me, due to the fact I no longer know what I want or know where I want to be. I know there are still things in life I want and see myself accomplishing, I still set goals. It’s not that I have given up hope. However, I do know there are some places I don’t want to be. Basically due to the reason my 15th lung anniversary and lung assessment was coming up I’ve been a little stressed. In a way, I’ve been looking for more reinsurance in my life and purpose.
I’ve been wanting to write an article that’s different to my usual blog about my yearly update regarding my lungs. I’ve been having mixed feelings regarding a 3rd transplant, based more on whether it is worth it. I haven’t shared this with anyone other than my middle brother Matt and I think he’s found it difficult as he looks up to me a lot.
Just last week, I told Matt how I felt regarding a 3rd transplant and what came out of my mouth didn’t really sound like me. Those who know me would say it wasn’t me at all. It was March 16th the day after my lung assessment, Matt came to attend the appointment on the 15th he came to listen in on what my doctors had to say as well to be there for support. The day after he texted me asking how I was feeling post assessment, and I gave him an honest answer.
I told him, “Meh, something probably to talk about more than in a text. In the long run of it, I need to get my life in order as to what I am going to do with my life. Otherwise, what’s the point to go through another transplant and continue this boredom. Sounds selfish I know but when there’s someone else out there that could use lungs, at this point right now I would choose that someone else receives them”.
His response “That sounds honest. Not selfish”.
I responded with “I know that. But others would have a different opinion how I see it”.
His response was “How do you think they may see it?”
And I told him straight up “Like I am giving up!”
I don’t want it to seem like I am giving up, I’ve never been someone that has given up on anything. Partially because I have a team that works behind me very hard and have never given up on me yet. I also have an amazing support group that stands behind me 110%.
He asked me a good question today that has changed my entire view on things lately or at least reminded me how I got here or what got me here. At the time I was writing a new article for my blog, his comment totally through me off course, having me change what I am going to post first.
He sent me a text asking “Can I ask you two kind of hard questions?”
I responded with “What’s that”?
His question was “First. Why did you agree to your first transplant, and second, why did you agree to the second one?”
I first answered him with “Would you like to know what has changed from then until now? Due to the comment, I gave you last week? Is that what you’re trying to figure out?”
He told me. Nope that he totally gets how I feel. Again he reminded me that he didn’t think it’s selfish at all. And stated, “Anyone who sees it as selfish is being selfish themselves.”
So I gave him his answer and I said “I have your answer, I am just trying to write something at this moment. But in a short answer, it would be DRIVE and HOPE that got me through both transplants. At both times I felt there was a future ahead of me. I am not saying there isn’t one now. However being younger there had been more room for error I guess you could say. I had something to look forward to is basically what I am saying. Traveling, meeting new people, going to school, the potential of living on my own. There are others as well but these are just some of them. Let’s just say it this way. At the current state, I am at right now, it’s not that I hate my life, it’s more the chapter I am in is very dry.
I am lost; the author responsible for this novel has currently lost interest in the leading character. There’s too much silence in my life at the moment and I hate silence. We all have a story to tell, I am just worried that I’ve told my story and there’s nothing left to tell. I am in the land of limbo. Figuratively speaking and obviously, if I am not happy with my story I need to change it. Change my story, change my life. I know that I need help but at the same place where do, I start. It’s difficult as I don’t know what kind of story I want to start, therefore how do I change my life?”
I brought up the hate for silence, it’s not that I really hate silence more to do with I fear it. It’s a linking connection of over thinking. It starts back to being in the hospital when I was younger at Sick Kids while being admitted. In the middle of the night after my family would go home. I would wake up alone to the sound of silence of white noise. I know supportively I had people that cared for me, however waking up in the night with no one there hearing the white noise of electricity running through the wall giving power to the medical equipment around me would always start my mind over thinking, what would lay ahead of me, not stopping until I would exhaust myself of overwhelment and finally passing out.
Matt’s question today has me thinking, my mind has been turning. I was hoping he could answer my own question to help me write a part of my blog. It wasn’t until I asked him did I see that I finally discovered how much I have impacted his life for the better. He pointed out I have probably helped others with my story, with my experience and presence in their lives. This gave me the reassurance to find the light I’ve been looking for. It reminded me why I have chosen many times to fight for my life. It has brought back the lost drive and hope that had vanished from my life.
I asked him “Over the past 15 years of my transplants what stands out to you? Achievements, change, the story’s that kind of thing”.
He told me it was simple, he reminded me it was what was and wasn’t there after. Movies that weren’t punctuated by coughing fits were one thing. There was something really nice about knowing you were able to breath easy. The other part was you whistling, it warmed my heart to hear you make that noise.
Then he really told me something, he said there is one other thing. I’ve struggled with my purpose in life, a lot. But watching you survive, it gave me a new purpose. EXISTENCE TO EXIST. It became the thing that fueled him while he was going through a very difficult time of his life.
And then he assured me….
That it wasn’t just him I’ve helped.
The next part that he told me has really lit the fire inside of me; it brought back the warrior that has fought so hard to be here in life. My purpose of why I continue with the journey of my battle of transplantation. I have always found pleasure in helping others and give back by showing them there’s hope throughout my story of my life and that saying goodbye shouldn’t always be an option. My true biggest fear is saying goodbye to someone, you’re practically saying game over to me. It’s usually why I’ll tell you “see you later but never goodbye”.
Matt reassured me that he was sure this story would be echoed with a lot of people, that I just haven’t helped him. He understood how I felt currently in life. And that he’s not suggesting that what he felt makes it easier for me. In fact, if like him, it would make it harder. But that’s the part of what goes on as we get older. It gets harder. And for me, he felt that isn’t fair. This is why he didn’t think I am selfish.
I’ve helped a lot of people, and have earned my freedom to do what I want and to be responsible for all my own actions. My writing can go a long way to help that, as well my art.
He said “But Dan, you’re a project on your own. The story you give us is personal and special for each and every one of us. That maybe your author might not be writing your story to you right now. But they are for us and all of the people you’ve touched.”
“Purpose is a hard thing to define, especially when you’ve set such a high bar.”
I’ve learned if you want to get rid of a fear the best way to release it is by shedding light on the topic. We need to come out from the dark. We’re taught as kids if we are afraid of the dark to keep a flashlight or night light on or near. Instead of keeping those fears underneath our beds or in the dark closest expose them. The longer we keep them hidden the longer we remain weak and powerless. In order to build strength, you must work toward what is holding you back. We lift weights against gravity to build the force of our muscles; it’s the same idea with our mind. Allow purpose, light, and reason into your life and your mind will grow brighter.
This has been probably one of the most personal things I have ever shared in my life. I share this with you in hopes that it will help someone else. You can’t allow fear to control your life. Expose your fear and you will get the help you need.
People that inspire others have a gift; it’s not taught, it comes from knowing experience by being in situations that we wouldn’t normally find ourself’s in. I am proud that I have been able to inspire others and help them with guidance in their lives. Its part of the reason why I continue with my life, I enjoy helping people.
I want to thank my brother Matt for reminding me why I climbed out of that lion’s den and continue to fight; you have helped me relight the fire within.