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This week I am preparing to make my way back to Florida. My last appointment that I’m required to be here for is scheduled for tomorrow (Wednesday September 23rd). I have had the plan made for a couple of months that I would drive home, avoiding being cooped up in an airplane with potential carriers of COVID-19. After discussing plans with my doctors for returning for future check-ups it occurred to me that I could wear an N95 mask, with a surgical mask over it, which was an idea given to me by some people at Cedars. Over the past few days I have finally started to second guess my long solo cross-country drive. As of right now, I am sticking to the drive, it will cost more, take more time, but there are a couple of big reasons that I am still leaning towards driving.

First off, this summer has been one of the heaviest, most trying, yet empowering times of my life. I have experienced the highest of highs and the lowest of lows in a matter of months. I can truly say that I have become an even stronger, more resilient person through this latest ordeal. I think I have felt things, physically and emotionally, that few ever have to face. This already on top of what both seems like a lifetime ago and at other times like it was yesterday that I was finally diagnosed with end-stage heart failure. It feels like things have been pure chaos for the past five years, and this summer was icing on the cake. Both meaning the worst is over and now it’s time to enjoy life more, and also that I reached my breaking point, both are true (knock on wood the first stays true.)

I truly never expected to live this long after the nearly deadly rejection episode I faced in the fall and winter of 2018. I have had to look death in the face more times than I like to think about, yet I’ve realized over the summer of how much I am stuck daydreaming about death rather than living the life I have been given. However, it helped me frame why I was so lost after it. Every time a nurse or doctor would hear my story about needing to be on ECMO AND a balloon pump, they would inherently tell me I was very lucky, most people don’t live through that. I knew I was lucky and have emotional scars and PTSD from things like being woken by receiving chest compressions, waking up and someone showing me that my hands looked like balloons and being told that I had to lay flat. Having such insane “dreams” while sedated in the ICU, that to this day I can describe everything about them. (It was a cartoonish looking doctor that wore an argyle sweater, with little round glasses on his very round face. Super Bon Bon by Soul Coughing was playing loudly and the doctor would mumble something and spin the bed around and take apart my body limb by limb and carry on till I was gone. Just in case you were wondering….)

As I said before, I never thought I would live this long. I truly thought that I would have to be on Milrinone (the drug that makes your heart beat stronger, but tears it apart in about a year on a normal person), or that I would not live through the surgery since a second transplant is statistically more dangerous than the first, not to mention the various pumps that have been placed in me to keep me alive.

Another very hard thing to deal with are the drugs, specifically the pain killers that go with the physical trauma that these events require. It has become very aware to me that I am unfortunately wired in that my body becomes very addicted, very quickly to opiates. For years, I was confused when people said, “oh I take a half and I’m vomiting” or “I don’t know where I am”. Ever since I first had taken one, felt very close to normal, without the pain I was feeling and maybe a little more loving, but not an extreme difference. However, it is wretched on my body, no matter how I stop them. The pain management system with this hospital understands drugs, pain, addiction better than anywhere I have been. After over communicating with them throughout the summer and doing a long extended ween down, when it came time to finally stop, I was still laid out feeling like death was around the corner, for about 72 hours. Previously, with my LVAD surgery I had a hard time coming off of them. It took someone explaining to me at how the drug hi-jacks so many systems in your body that it tricks you into feeling pain, to take more, that i was finally able to stop. I have had to be on pain killers for my LVAD, when I got sepsis, for my 1st transplant, for a broken elbow twice, for getting my wisdom tooth pulled, during my rejection, for my broken spine, and over the latest stay in the hospital, at least once for a headache, and that’s just what I can remember since May of 2015. There were times in the past that I resorted to questionable, yet legal substances to try to take the place of the painkillers, but that had the same side effects. After going through this latest time of getting off of them and withdrawals, I am going to do everything in my power to keep from having to take that poison. While I’ve never taken an illegal substance to try to “fix” myself, I truly can see how people end up going the rest of their lives never getting off opioids. They are dangerous!! I was listening to an interview with some musician that struggled with addiction and they stated that the one thing they wish they could go back and change was never feeling what opioids do and it really hit home. Fortunately, in the past and now, I’ve been able to get off of them alone and without help and stay off of them. I just hope to never have to take that chance again. It also was a huge strain on my last relationship, and I never want to face having to put another person, myself, or a relationship through this. I am very sorry to anyone who has had to be around me through these struggles. And with that, if you are struggling with addiction, seek out professional help. I have been open and honest with my counselor about my struggles and he has been helpful and honest with me.

With all of this in mind it is for the past five years AND for the past 5 months that I am deciding to drive home. I think it will ultimately be the time I need away from everyone and anything. Hours upon hours for any unresolved thoughts, feelings, issues, memories, etc. to come up and let me face. Reading about cross country solo tips, I have found that so many people go through every emotion, and it’s truly what I need right now. I don’t mind crying in front of people, but there is power in nothing to interfere and just let it flow. And on the other hand, if I need to laugh, shout, anything. I will truly have nothing stopping me. It is time for me to face my emotions that I haven’t recognized, head on.

The second reason could really be lumped in with the first reason, but it’s more interesting to make it a list, even if it’s only two items. Years and years ago, I got a quote from Henry David Thoreau’s “Walden” tattooed on my stomach. The ink embedded into my skin simply says “Because I wished to live deliberately”, however the full quote is, “I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived. I did not wish to live what was not life, living is so dear; nor did I wish to practise resignation, unless it was quite necessary.” The road is going to be my woods. While I was in the hospital, so many doctors and nurses inquired about my tattoo and once while talking about it, I realized how badly I have failed to live up to the quote that I had tattooed on me. So, I am going to go on the road to see what I can learn about life. And in the more literal sense, I need to seek out experiences and go after them head first. I for one should know that life isn’t guaranteed. So I am planning my trip to try and see some things along the way that I haven’t experienced before. One is that outside of a few states in the North East, Hawaii and Alaska, the other states I have not been to are Arizona, Nevada, New Mexico, Oklahoma, Texas and Louisiana. So making this drive, I can knock out those 6 states on this trip. Believe it or not, I haven’t been to Vegas, so hopefully I will be able to see that city, even if it’s just driving through. I also hope to take in the Grand Canyon and the Hoover Dam, although that is all depending on when I make it to those spots and how tired I am.

I look forward to a new chapter in my life. I am healthy, things seem to be going better than they have in AT LEAST the past 7 years, but in honestly probably A LOT longer. I have discovered new passions, abilities, new friends. I have had my confidence stoked by getting attention from gorgeous women in Hollywood and Beverly Hills. I have faced many of my fears, made huge steps and some plans to lead a better, more fulfilling life going forward. I fell in love with Los Angeles while I have been out here. The juxtapositions such as the glitz and glamor of Beverly Hills, Bel-Air, Brentwood, etc. only a few miles from gritty neighborhoods, where untraditional beauty exists. There are so many layers to this chaotic beautiful city. There are so many opportunities here that you just don’t find other places. I still don’t know if it’s more or less than my love for Florida, so that will be a huge decision down the road that I will have to process as well…stay tuned.