Sharing the Struggles

I want to get something straight during this post before I even begin writing about what I really intended on writing. Something that I struggle with often. Something that I’m fully confident others struggle with as well — it’s about sharing our lives on social media. I actually surprise myself. I used to spend the majority of my life doing everything in my power to hide my health and everything that it involved. Honest to goodness, some people would never believe how unbearably exhausting it is to try everything possible to appear what others consider ‘normal.’ Nowadays, I find myself sharing health updates, personal accomplishments and writing blogs letting the outside world in to the inner most feelings of my new life, learning how to cope and understand how to literally start over after everything I’ve ever known. And to be honest, I’m not sure which of the two are better. I have a hard time when writing deciding if I should just highlight and delete every word once the blog is done. Am I helping anything by sharing — am I hurting by sharing? Am I just filling this social-media-run-world with more personal information that truthfully nobody actually cares about?

But heres why I do it: Total and complete inspiration. I have this burning passion inside me to show others in the dark that there is light to be found. I post the majority of my life, my adventures, my family, friends, relationship, places I go, things I’m able to do now that I never would have imagined being able to do before — but never do I feel as though I should be sharing “the bad stuff ” — the issues that still linger in my life daily, in different ways shapes and forms then years ago, but still very much real and present. I really, really used to struggle with sharing my fears and health status back before these new lungs. I hid for so long — never letting anyone in. I’ve come a really long way — and now I sometimes find myself asking if maybe I’ve even come too far. I share the things that I share because I am so damn proud of how far I have fought to be able to live the life I’ve been living the past few years. I want to share every second! I want others that are struggling to see where I’ve been — so low, so hopeless and so incapable of any type of quality life, to a life of gratitude and endless possibilities! I feel like, as selfish as this may sound, I have something to offer those who witnesses my journey through the life I presently live. It’s not tangible — its not monetary or advice-filled or even that out of the ordinary (for most). What I provide by sharing my story is hope — so much endless hope and excitement and pure addiction, appreciation and ecstasy for the universe and all of its daily miracles big and small. Thats my reasoning behind the blogs, the photos, the sharing of my hospice work and the most genuine reward I feel from giving all of myself to this world. I want to share every ounce of all the good in my life in hopes that it relieves just one struggling soul to see light. Theres an endless need that burns inside me just roaring to show others that there is nothing so bad in this world that cant be overcome by the power you hold inside yourself. I can say in all honesty, I’ve never posted a moment or a memory or an adventure or an experience for any certain amount of “likes”. What I post and share is intended for so much more than that. I post positivity to be a beacon of light. I want so wholeheartedly, so sincerely with everything inside me to lead as an example for people to be changed by powerful of works of mercy and a grateful heart. There is goodness, there is love, there is endless hope no matter what circumstance. I strive with this new opportunity of life to be an example that shows life is worth living at all stages — at the most broken, the most unexplainable lessons, incurable illness and unimaginable loss. There is reason behind all things, even unbearable things we may never understand. I share my positive blogs and pictures and my life after transplant because I feel like I have been given a purpose to remind those struggling there is light through darkness, and no matter how bad or scary things become, I wont ever let fear keep me from the power of fulfilling this purpose.

Now, here’s where I fall short. Posting the struggles. This is something that I’m not comfortable with. With the help of a new transplant friend, Tiffany, I’m starting to realize the negativity I’ve associated all along with sharing more than just the “good things,” shouldn’t be frowned upon, but it’s still something that’s not easy to accept myself, let alone with others.

Chronic disease, organ transplantation, clinical appointments, life expectancies and learning to be in control of an entire new body isn’t at all just a physical adjustment. It’s mental and it’s been really hard for me to share the struggles I’ve dealt with after my new lungs because I haven’t wanted to seem ungrateful, weak, or still broken. I’m supposed to be fixed now, and I’ve never thought of sharing my struggles as something that could be beneficial to anyone — instead, I saw expressing the negative pieces as cries for help, weaknesses, and things that should be hushed because I should only be grateful for the life I’m able to live now. The truth is, life after transplant is full to the brim of hardships and struggles — it’s just different issues than I’ve dealt with before — more manageable issues but issues nonetheless. Putting it out in the open truthfully, I’ve had over 75 positive cancerous spots taken off of my body caused directly by my anti-rejection pills over the last four years — rejection meds that I can never discontinue if I want to stay alive. I’m in constant fear of organ rejection. Every sign and symptom of a cold gives me anxiety that all that I’ve worked for for so long could be taken away from one infection. I have MOHS surgeries every four weeks and just recently had a partial finger amputation for a cancer spot that spread down to the bone beneath my finger nail. I’ve had blood clots that spread to my lungs. I’ve formed uncontrolled diabetes to the point that when I came in to be admitted this time around, my body was so stressed, my sugar was over 1,000. That number is easily deadly. I’ve been avoiding a permanent diabetic pump even though I know its needed at this point. You might also be surprised to know that I’ve been on steroids for over a decade, which causes the most horrific, deep, uncontrolled bone pain to the point of screams. I don’t drink alcohol because of high kidney functions that require monthly hydration through a permanent port in my chest because standard IVS no longer go through my scarred veins. Those high kidney functions will eventually result in progressive kidney failure due to the pressure of the anti-rejection meds that keep me alive, but thats a worry for another day. I’ve even done courses of chemotherapy to try and lessen the progression of the cancer caused by the anti-rejection meds. I’ve fought, and continue to work through fertility issues— we’ve researched surrogates, I’ve dealt with positive family planning and discouraging experiences as well involving personal opinions of professionals who don’t believe its ethical I bring life into this world with a life- expectancy of my own lingering overhead. All of these things are just to name a few — and I would look at these things as issues people would never want to hear about. So, I’ve kept them all quiet. Until now.

The Real Post: The Latest Struggle

Mental Health. There aren’t any words to be able to explain a life where I’m able to wake up daily and breathe air into my lungs. Mornings I’ve never imagined waking up next to someone I cherish, who accepts me for all that I am, because of all that I’ve gone through. I still struggle daily with the acceptance of that concept — of any concept really that involves things considered as “normal life.” But here I am. I was called in to the hospital on a June night in 2014 and have never been the same. My old, deteriorated, sick lungs were removed and replaced with the gift of new life from an organ donor who remains anonyomous. Since then, I’ve accomplished things that were only far fetched fantasy to me at one point. I’ve traveled. I’ve celebrated transplant anniversaries in The Florida Keys, Disney, Orlando, I’ve swam with dolphins, I’ve zip-lined, I’ve found a purpose in work I’m passionate about and pour my heart and soul into hospice work as much as I possibly can because I know the fears that end of life can bring. I’ve made new, lifelong friends. Spent valuable time with family. I’ve found love. Actually, I cant take credit for that. God placed love, acceptance, support, excitement, a best friend and a loyal partner in my life who walks beside me through the bad things I don’t want to share.

I’ve tried alligator! We have a trip set for Atlantis Bahamas coming up and another Florida Keys planned for my anniversary of 5 years strong since my life was saved. I’ve literally had to ADD things to my bucket list because there was a point I was crossing things off too rapidly. I’ve filled my life with volunteer work, celebrating 10 whole years as a volunteer at Camilla Hall, where my heart is at home. I’ve continued to build upon a relationship of infinite trust with the Lord that could never be broken. I have no plans on stopping. I have no plans on slowing down. Which is why right now is the hardest physical and mental roadblock I’ve dealt with in years. Slowing down when your body is suffering isn’t something you plan. So, having my first issues with my lungs since my new life is something that made me embarrassingly scared. I immediately felt like I was picking right back up where I left off what seems like such a long time ago. The chest pain, the rattle, the wheeze. The panic finding the breath for your next word. It all came rushing back. There’s all these statistics and I’m only human. The life expectancy after a double lung transplant is estimated 5 years. I do my very best to avoid the feelings that come along with stats like that, but again. — only human. So, when I started to feel in my lungs these old symptoms from back when I lived in survival mode, you can see how that could mess with someone’s head. Can my new body handle this? Is this temporary? Was I given a 4 year long pause from dying and it was remarkably beautiful but I finally did it — I used every ounce of passion life and service that You’ve given me and now it’s really time to come home? This is the truth. These are the things you think about. The things I really don’t know should be shared.

I tried starting out with at-home IV antibiotics which isn’t uncommon for me still these days, and we gave that a chance to work. Usually it does. This time it didn’t. I was brought into the hospital around day 10 of feeling the worst I’ve felt in years. I tested positive for RSV virus deep in my lungs. My pulmonary functions test which keeps track of my baseline lung strength is down the lowest it’s been since my recovery time out of surgery years ago. Normally, this wouldn’t be something I share, but my way of thinking has been changing and I’m finding it just equally as important to share the struggles along with the joys. This is the important part about mental health — my latest struggle — something I’ve spent so much time trying to avoid. I realize expressing my blog in this manner – so honestly— is in some ways equivalent to the physical care I’m receiving in this hospital – through IV antibiotics and treatments. They go hand in hand and it’s just as important to inspire as it is to shine truth. This life is about balance, and how could I expect anyone to ever understand the gratitude I’m full of if I don’t let you inside the darkness. I’m starting to see that mental health and sharing our burdens aren’t something to be ashamed about, but proud of, instead. I’m still working hard currently admitted to the University of Penn doing my best to overcome this RSV and come out stronger than before. I have all the faith and hope in the world that I can beat this — especially with the outpouring of love and support shown by such sincere people in my life. Asking humbly for positive energy, thoughts and prayer for continued patience. I’ll be sharing updates — good and bad! — on my social media accounts.

Always holding on to hope,

Sam