The title of this post says it all. I know that I do not write very often anymore, and I hope if you are reading this that you can still trust my words. Either way I have a story to share. One where the storm still rages on. I am actually afraid to type out this story. Mostly because I do not know the ending of it all. I cannot foresee the resolution. I cannot predict the outcome, if there will be one at all. So I hope you will take this journey with me, scary as it may be.
On April 5th 2021 I went to the hospital for a “routine” elective surgery. The surgery was promised to make my life so much easier, to be the resolution to years of pain and fear. As life goes though, the very opposite occurred. It took almost 12 days to discover that a hole had opened up in my intestines due to the elective surgery. In that time a lot of not so nice stuff leaked willfully into my blood and abdomen.
So the night before my 30th birthday I had my wife rush me to the ER. I knew something was incredibly wrong, and boy oh boy was I right. As you can imagine I was now septic and critically ill. Scary words were being thrown around as surgeons and staff began rushing around in chaotic flurries. Meanwhile, my wife and I attempted to catch our breath and jumbled thoughts. All I could think of was trying to catch her attention and sew some last minute pieces of encouragement into her heart. For fear that it would be the last time we spoke, for fear that she would feel so alone. Still there was a sense of peace laid lovingly over me like the warmed hospital blanket.
April 16th, I was put to sleep. What was promised to be one surgery that most surely would result in a colostomy to save my life, turned into 4 or 5 more surgeries and a fight for me to remain on this earth. Surgeons and doctors stopped promising results. They told my wife it was in God’s hands.
So there I laid for another week or two. A ventilator down my throat. More medications than I will ever remember. Pipes and tubes jutting out in every direction. What I remember over the next two weeks is a mist at best. Fleeting thoughts and scrambled memories. a menagerie of splintered pictures stitched together with medication, dreams, nightmares, visions, music, prayers and the faces of all the people I love.
I slept through my 30th birthday is how I sum it up when people ask about my experience in that time. Sometimes I still think I am still 29. There are some small memories that have been branded behind eyes. I see them every time I blink. When my sedation would begin to wane there were few moments in space, in between time where I could see and hear. I remember not knowing what was happening. I remember not caring. I knew something was happening, but that did not matter to me. From what I have been told my loved ones had to constantly argue with the staff when I began to wake. The staff was convinced I would become belligerent and demand the tubes be pulled from me. That I would try and pull the ventilator out myself. Sure, if you know me having my voice striped from me is the cruelest nightmare I could endure. But I promise, as hard as it is to believe I didn’t give two buttons about the tubes invading me. I only wanted to communicate two things.
I wanted those with me to know that I was terrified of the nightmares that the medication was stimulating. And I wanted to ask one thing of my wife. And this memory is welded into my sight. A nurse named Matt (coincidence not overlooked) believed my wife that I had something to say. So he gave us a paper and pen. And I wrote a simple, albeit intense phrase. Most of my letters were written on top of each other, but she knew as well as I did what I was trying to say. Three words. A request. A hope. A promise. I wrote to my wife “Change the world”.
If I could not say anything else. I wanted more than anything for my belief in her to be the last thing I ever said to her. In those three words. I wanted to make her promise that this experience would not undo her. Sure, in hindsight, it seems like a lot of pressure to put on someone. But my wife knows me well, and I hope by now that you do too. I have always had a flair for the dramatic. I have always seen my life play out like scenes from a movie. But now, lets not understate the fierce passion and strength that rests in my wife.
She looked me dead in the eye. “Not without you.” I remember how her three-word-reply surged my heart with warmth. Maybe it was mixed timing with pain mediation. and maybe I couldn’t physically express the smile it would have brought to my cheeks. But I can’t deny the comfort and strength and life I felt as I drifted back to sleep.
If I could install an intermission into a blog post, it would go right here. This is incredibly difficult for me to write. I have never been afraid of big emotions, but over the last few months my emotions have taken on a life of their own. I have been inundated with the intensity of joy, humor, sadness, remorse, gratitude, love, fear and hope like never before. I am so grateful to still be here. To be typing these words that may scare me.
Before I get back into the story full force, I am finding myself overwhelmed with gratitude. My heart is full of thanks for all those who have prayed and continue to pray for my healing and restoration. For the doctors and nurses who treated me with dignity and love. For the praise songs sung over my bed, for the hands laid on my head and heart. For the prayers of expectation and promise woven into the stitches of my incisions and throughout my body. Thank you. My wife and I will never be able to pay back all that has been given, and I don’t think anyone expects that we should. But I can promise that it will all (the time, the energy, the gifts) be used to its fullest extent and when we are able we will be able to give to others as you have given to us.
“Change the world” was not a desperate plea. It was a promise. Thank you for believing in us.
With all that sappiness being stated, I think it is important to note that eventually my ventilator came out and I was able to produce a horse whisper. To which I utilized in the most “me” way I could muster. When I saw my brother who flew in from Nebraska and my best friend who flew in from Nashville. I promptly yelled at them for uprooting their schedules and coming to see me. I may have used some… choice words for each of them. In my defense, I didn’t yet understand the full picture of what I had endured. And of course their first moments of joy seeing little old me alive, were met with me cussing in their general direction. It is all in love friends, never forget I am from North Jersey. Do not get it twisted, though, seeing these people in person may have not computed in my brain, but it overwhelmed me with joy. Whether my words matched that or not. And whatever I did say, gruff as it may have been, I promise it was followed by my smirk and what my wife calls my “shit-eating-grin”. Even if just in my head.
I spent another week in the hospital. I had to relearn so much. In fact, it took a week before I began to ask my family what had happened. Of course, by then I was aware that whatever happened was bad and honestly I was terrified to learn the truth. Not even because the potential of death scared me. I was terrified to learn about the strain that my illness had put on my loved ones. I was terrified to learn about the fear and concern that they experienced. Maybe one day I can share the perspective of my wife or someone else, ’cause I got to sleep through most of that drama. But as I was moved from the hospital to Rehab I began having those scary conversations.
I learned that my fridge broke and warped my floors while I was asleep. I learned that my wife never left my side and slept in the ICU with me every night. I learned that nearly a hundred churches were praying for me and hundreds more people heard about what I was going through. I learned that I still found ways to make people laugh, and that sometimes I was kind of a jerk in my stupor. I learned that my loved ones knew me better than I could have ever thought. And when I thought my voice was lost, they took up that mantle flawlessly for me. I learned that I may have been high as a kite, but I never lost my wit.
I won’t write much about rehab. It was an experience that deserves its own story. Not one of triumph, but one of advocacy. A story that explains why people with disabilities and pre-existing conditions are afraid of new doctors and medical staff. A story that exposes the infantilization of the elderly and disregard for human dignity. Nothing kicked me back in gear as much as my anger against the injusiices that I witnessed. So in a sense, I am grateful for that. Rehab put the pep right back in my step even though I still cannot walk. And by pep, we should all know by now that I mean a burning and raging inferno that is my passion for disability advocacy. That place went ahead and poured gasoline right on that fire. I got to go home on May 17th and haven’t looked back since.
So what now? What next? It is almost July. I am home. All my tubes are gone. The only things left are a gnarly scar running the length of my stomach, a missing belly button and a bag that attaches to my belly to catch the poop that falls out of my “front butt”. I will have to tell you at some point about the moment where I found out what a stoma was. In the meantime, do not be afraid to google it yourself. It isn’t my favorite thing by any means. But the alternative seems a lot more grave…
I am looking at a year or more for recovery. Having Muscular Dystrophy along with all these complications is like a multiplier effect. I believe I am a few months away from building back strength enough to walk again. We have bills pouring out of every orifice. Insurance, as expected, is denying claims left and right. (Don’t worry too much they haven’t met the side of me that should have become a lawyer yet, but they will). This mountain to recovery is difficult. It feels so lonely some nights. Like maybe this storm will never end. In other moments I celebrate with such joy tiny accomplishments like being able to drive a car or make a grilled cheese all on my own. Every single day is a battle, some times every breath is a battle.
But part of me believes we have finally reached the bottom of the iceberg. Many who know me and my wife, know that our first four years of marriage have been tumultuous at best. We have endured one swirling and tormenting storm after another. Each seeming less and less surmountable. Yet, here we are. Alive. We continue to walk into fire after fire. And I am sure that you have too. And those fires have changed us for sure. And up until now we would walk straight into those fires all over again. So I have this hope that is fighting to eclipse fear, that this too will be a circumstance that will not undo us. That in some way purpose will be assigned to chaos. That fear will be unwritten and surpassed with courage.
A hope that life will be born out of what was supposed to be death.
My survival was a miracle. My survival is a tapestry sewn with the prayers of many. My survival is a few more breaths to “change the world” and to cherish all that I love. Every moment I choose to work towards recovery I choose to honor that tapestry.
I will never mislead those reading these words. There are many low moments. Sometimes there are dark thoughts. Loneliness is Fear’s companion. Doubt works hard to crush Hope. Every setback feels like it might be the end. But then… I breathe again. And as long as there is breath in my lungs there is a fragment of joy to be found, to be explored. Sometimes that joy is the tiniest light in the dark, like a pin hole in the curtain blacking out a room.
Life can be scary some times. But trust me, cliche as it may be, a life not lived to the fullest is much scarier than a life ended too soon. If you do not believe in you, well let me be someone to tell you that I believe in you. That “this too shall pass”
Together we are going to believe that God is going to assign purpose to this mess. It may not look like anything we can imagine, but if you just keep taking breaths. One after another. You will eventually see that you breathed through your storm. One breath at a time is all that is asked. Small as it may seem each and every single one of your breaths is life being lived. It is pure radiant joy. I am smiling because you are still breathing. If this is too much to believe, then allow me and others to believe it for you. You just keep on breathing. You still have life to live, as do I.
I wish I knew how God intends to redeem the pain I have endured. I truly do. And I am sure that you do too. For better or worse, that is rarely how life works. With that reality I like to focus on the visage of Jesus in a boat enduring a terrifying storm. Sleeping, steadily. I imagine how calm his breathing must have been. Surely, someone must have to be unconscious or ignorant to endure such a storm without a sign of fear or doubt. But peace is not ignorance. It is knowing the storm intimately. It is looking directly into the heart of the storm and smiling. It is knowing that as long as I am breathing I am still alive. The storm exists, but it will not be my end. There is a creator who loves us with a fury much more powerful than the winds of any storm.
Who knows? Maybe when the storm has calmed, I too will walk on water.
P.S. maybe this song is too “on the nose” but it was playing in the background as I edited this post: