Wednesday, June 13, 2018

Experienced Sea Captains & Me

I believe I owe everyone an apology. I have been less than honest with the portrayal of my day to day life on social media. I have painted a picture of perfect health and happiness. Followers, friends, and even family often forget what I went through, and continue to go through because of this. I don't blame anyone but myself for not expressing adequately the reality of my ongoing struggles with disease. I put on a good show, but the reality is I still wrestle daily with my conditions. Let me explain:

When ones life pre-miracle was a constant downwards trajectory, both the highs and lows of recovery all seem so manageable. My lowest day now is still better than a good day pre-transplant. (So why wouldn't I smile?!)  This in no way means I do not continue to suffer - I will deal with daily symptoms from the damage that was permanently done to my body for the rest of my life. It simply means, I function at a level of misery many would buckle under - It's just what I am accustomed to.

Imagine this: If you put a sea captain who survived a typhoon in choppy water it may seem he easily navigates these conditions. In reality, it is still difficult, he has simply dealt with worse and is more equipped to deal with the treacherous water conditions than another captain who has never seen a wave. 

Yes, I smile, I laugh, I explore, and enjoy. My Instagrm posts are filled with excitement and happiness. Simply put, I am thrilled to be alive (even on my roughest day) because it is still so much better than where I was. I was dying. Anything better than that is a miracle to me - I just don't see the point of complaining about my current condition after what I survived. My aching joints, my undigested food, my so-so lungs, and my okay heart, all seem so miraculous! I'm enjoying every moment with renewed vigor because I never know when this bonus life will end. I live on the edge of a knife, constantly awaiting the tip. I do not mean to glorify my recovery or paint a skewed picture of my reality, I am just trying to make the most of this glorious epilogue. 

The truth is I am happy, I do feel good, and I have seen vast improvements in my health. I feel like I was given my life back - but keep in mind that is relative to literally being kept alive by tubes and tanks. While I am now functioning at a level of health that seems "normal" to the outside viewer, I am still struggling. As the experienced sea captain, I am simply used to the turbulent water conditions. Rejoice with me, but also understand my situation isn't what you can simply see from the external view.

My health will still be a life long struggle - However, I now have time to enjoy the ride!


  1. Hi Chanel, It's great to hear from you. I will rejoice with you and continue to pray for you. I think we all deserve no less in life. Carry-on coping with your everyday life that is just a little better than it was before you went through a-hell-of-a treatment to save it.

  2. Continue to be you! You, without a doubt always, through good times and bad, portray an incredibly realistic and beautiful story. Your story exemplifies how we should all live life (despite the condition or state). You are continually looked to by myself as the epitome of strength and courage. For myself dealing with Autoimmune disease, it is you who I am continually thinking of. Please continue to post however you please. This is your life and you live it best. Thank you for sharing.

  3. Always good to hear from you. People not in your shoes will always misunderstand and not understand at all. Keep smiling that pretty smile and embracing life as you do so well, It's the best way.

  4. This made me think of a poem:

    ‘as you are.’ says the universe.
    'after…’ you answer.
    'as you are.’ says the universe.
    'before…’ you answer.
    'as you are.’ says the universe.
    'when…’ you answer.
    'as you are.’ says the universe.
    'how…’ you answer.
    'as you are.’ says the universe.
    'why…’ you answer.
    you are happening now.
    right now.
    right at this moment
    your happening
    is beautiful.
    the thing that keeps me alive
    brings me to my knees.
    you don’t even know how breathtaking you
    as you are.’ says the universe through tears

    Nayyirah Waheed in “as you are | you are the prayer” in Nejma

    Thank you for sharing as you are. It is a blessing to be able to bear witness to any part of your story. Focusing on the positive, less illness centered aspects of your life does not in any way take away from the more treacherous parts of your story, and vice versa. It makes my heart so happy to see you out there smiling. You are such a bright light and I am proud of you, always.