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Not in Love with Life Right Now

I find it immensely difficult right now to capture, nor express into words the way I feel in a way that conveys the meaning without coming across either pessimistic, or entirely nihilistic. Of course, for anyone that knows me, they would attest to the fact I believe in a form of higher power, coloqually referred to often as "God". What I'm basically trying to say, I want to be honest, without fear of apprisal (or that I need the help of a shrink, or worse).

The first thing you need to understand is that my life has felt, at times, to be a never-ended uphill battle. It has been filled with heartache, disappointment, lonliness and seemingly loss after loss. Yet, often in these circumstances, the best move isn't always trying to figure out a root-cause, or bottom-line to senseless suffering.

Nevertheless, for me: I suppose the first thread of this suffering was first realized when I reached high school and came in the form of irretractable depression, insomnia and a hate for the world as well as myself. It was around the time of 9/11 and I couldn't explain what was happening to the world, nor what was happening to myself along with my social life. I felt so betrayed, lonely and abandoned. My parents were cluless to my affliction and maybe that was for the better because I wouldn't have wanted therapy, nor antidepressants anyways. I think there are inherent dangers with both modalities when presented to a teenager that is losing his/her mind.

Fortunately, I used healthier coping strategies than many do. I didn't resort to drug use, I didn't resort to hurting myself in self-afflicted form. More than anything, I became apathetic and indifferent, with the help of computer games. This in turn, offered me the opportunity to learn to program for the web, administer a successful fansite for a game I was playing and last (but not of least importance) win first place in a web-design contest out of 350+ competitors. Between the latter along with me taking real efforts to socialize (via ultimate frisbee) as a senior, I rounded out high school feeling a bit more self-reaffirmed.

While I was involved in karate for a decade and received my blackbelt, work in highschool (along with my interests changing) got me away from it. It too was a great grounding force in my life and likely is one reason why even amid all of the crises in my life, I exercise some form to self-regulate. However, it was just after high-school that the self-doubts and self-worries about something being wrong with me came into full-focus in the form of stage IIIA/IIIB cancer. It was treated aggressively, along with a big chunk of my tibia carved out and retrofitted with a metal endoprosthesis. Suffice to say, the chemo was high-dose/rough and even with it, my prognosis wasn't good. Only 15% chance of surviving this form of cancer. Moreover, that wasn't the limit to my problems. My leg wasn't truly right for years... if ever. It was a continual source of pain, scar tissue and revision surgeries. My orthopaedic oncologist got it all wrong in thinking my complaints were the sake of complaining, or some theatrical-over-the-top-attempt at drug-seeking. Of course, it would take the better part of 15 years and dozens of surgeries later for her to truly understand that.

College saw me through the loss of my brother, the loss of my Dad, my Mother moving away to California and one failed 4.5 year-long relationship. I somehow managed to keep enrolled in school through all of this and follow-through on my promise to at least get my bachelor's degree and my other post-graduation promise to remain involved in academia.

So, after graduating, I first volunteered my time to this lab. At the time, it was just 6-8 hours one day per week and one month later I landed a job in tech. For the first six months, this tech job was what I considered to be an actually "good job", aside from it not paying the bills, health expenses, nor did this job offer health insurance, or PTO. The one day a week at lab, as a volunteer, for me was a dream job. In the meantime, over the course of the next two years, my health began to deteriorate. Honestly believing that I could not take up a job anymore physical than the tech job, I went against better judgement and asked for a job at the lab. At first this didn't work, but at least the PI of the lab was honest that I was on his hiring list, but there just wasn't the money. Fast forward two months, I was hired, and nine-months later let go due to over-spending on animal perdiems. 2017 wasn't a great year and was spent between both the tech job and Friday's where I went to sac animals and extract their brains. However, I was ensured if I endured and presuming the next 5-year, 2.5M grant was funded, that I would be hired on as their lab manager and be promised five-year's of continual work.

You see? That is the problem with academic research. It is a salaried position and doesn't pay well, but the health and retirement benefits are good. The standard-of-living is outstripping the pay offered. Regardless, this five-year period saw me from going from being an assistant to my post-doc, project-lead on a three year project to an eventual falling out with her because she was burnt out trying to juggle pursuing her own research and managing the bread-and-butter grants that actually pay the bills for the lab. Starting in May of 2018 within six months, she left, and all of the responsibility transferred to me. It was a scary time, but it was also a time of growth. Through Feb 2021, I managed the project and the lab well, along with my cohort (another PRA) named Erin. We even turned around a year's worth of deficit due to an exploding animal colony through tight communication and record-speed turn around on genotyping from my end. We also decided early on that she should handle the animal husbandry alone (her idea) while I handled all of the analytical genotyping.

Also within this time, I really came into my own. I had a sense of purpose, a sense of identity and even if my leg wasn't 100%, I was still able to work a full day and at the end of it all, drive a manual clutch to FedEx to drop off our prepared samples for outsourced processing. It was exhausting and took 75 shipments, 20-25K worth of animals. But I was dedicated and good at my job. Both my boss saw that, along with the students. My boss basically let me run everything, by offering me full-agency and full-accountability for my work. Between the part-time position and this full-time lab management position, saw me through the period of chronic health issues that started in late 2014 / early-mid 2015. I learned to treat these symptoms pharmocologically and to budget my energy, which often meant there wasn't much energy left after I came home from work. Regardless, I had struck a balance and felt good about my life... finally.

Unfortunately, starting in mid-late Feb 2021, that all began to change. My endoprosthetic leg became acutely infected. It was at first two surgeries, then back to to work. Followed by an oral course of antibiottics through the remainder of the year and a limp that wasn't getting better, it was getting worse. It took my Mom returning in October of 2021 before I could have the necessary support to undergo the full two-stage revision. This meant removing the entirety of my prosthesis and replacing it with a fused-knee rod wrapped in antibiotic sement. Within three weeks, it was clear it was horribly infected, but those pleas were ignored (just like all of my concerned previously voiced to my orthopedic doctor, but this time it also included this shitty infectious disease specialist). The story is too long to recount here, but suffice to say, the first fusion failed, the second fusion seemingly succeeded... but upon reimplanting my endoprosthesis... within a month, it too was horribly...horribly infected. Then came the amputation.

The amputation found me in the hosipital for 21 days, infighting with their pain team to obtain adequate pain-relief. After I got out, I had to give myself anticoagulent injections into my stomach, followed by another follow-up surgery six weeks later. Hell, it took the better part of five months before I could even get my socket prosthesis, followed by another three weeks until I started physical therapy.

With where I'm at now, I'm about 4 weeks into PT. Eventually I will run out of visits. My PT, Guy Lev is awesome both as a physical therapist as he is also a compassionate advocate/observer. Although he hasn't dealt with limb-loss himself, he has been a champion in supporting me both physically as mentally. Pretty soon I will run out of visits.

Also, God-bless my lab boss, he kept paying for my health insurance, even though I stopped all work for him in May of 2022. Starting Apr 2023, I will be on my own to pay for COBRA. Additionally, I should have long-term disability hopefully at least through May or June. I hope this can remain flexible.

So here I am, completely confused. I feel like I have no sense of security, or safety. I don't know what I'm going to do for a living after having lost this leg. I find myself physically limited and the thought of being forced to work in order to have an income/health-insurance until I build up my endurance fully and adapt is leaving me completely disgusted. It feels like everything I worked so hard for, over the course of the past nine years is slipping away from me. I can either try my hand at going back to research, or I will need to figure out how to obtain a career path in technology. Per the former, I had the better part of the past decade of my life wrapped up in that. Per the latter, I didn't enjoy my tech job... it became a continual source of stress, with very little reward and besides I can only earn career-level salary from some form of programming job, to which I don't have the education/complete knowledge/experience and likely won't be considered (or hired) even if I somehow pulled off getting hired.

So that is what I'm stressed out about. That is the reason why although I do appreciate all that God does to provide for me, each and everyday - this road ahead is absolutely terrifying to walk and it often feels rather like I'm ascending - not sure when I'll fall.

I need to redevelop my purpose in life and also this time around, find an employer that will offer me similar flexibility/anti-micromanager/antonomy/flexibility, while also offering me and myself a real work-life balance where I don't have to work for stretched of 2-3 years without fear of taking a holiday for fear of the project falling apart. Also, this employer will need to have hired enough people so if any of us need time off (or the very nature of our job responsibilities) offer a layer of flexibiltiy with coming in late, say for an AM doctor's appointment. I am still dealing with functional and pain issues that I hope will be improving with time, but I'm also transitioning into an entirely new chapter soon with a seemingly mandatory 9-5, weekdays, which I worry is going to conflict with my provider visits. I also worry that I am going to find difficulty in adapting to my circumstances even when I'm assured the timeframe until I am completely used to / adapted to my circumstances is 2-3 years from onset.

Finally, I also worry for my Mom. She works hard at her job and she comes home to seeing me in the state I am. While I choose to be optimistic, I can't lie, I'm scared/embracing for that next bad thing to hit. Right now, my only distraction from this is our podcast, a few homelab computer projects and sleep. I really hate this situation, more than you can believe, but hopefully your imagination hits close. I don't wish this feeling on my worst enemy. However, I am doing my best to hold and believe God and my future has something really unexpectedly good in store for me so these worries will hopefully become a thing of my past. I can't imagine living this way for the rest of my life, so I hope and pray it improves.

So anyways, I just wanted to clear the air with everything past and current. I apologize if this update come across negative, but it's honest. In contrast, my video updates are honest, in their own way, but I choose to not share that negativity and true vulnerability with you for fear you won't want to watch those videos.

Peace. Love. God be with us all.