5 years ago on November 30, 2010, Travis and I sat in near silence as we drove to Cedars Sinai for his back surgery. His MAJOR back surgery. A surgery that would take months to heal from. We were both scared for our own reasons, but it was something totally necessary not just for his body, but for his life.
I held his hand tightly in mine, the entire ride.
~~~~~
I met Travis when his back was bad.
I married Travis when his back was shit.
I nearly lost Travis when his back was to the breaking point.
~~~~~
For seven years, I watched Travis fight daily against chronic pain,
against worsening depression, and against everything telling him to quit. For seven years, I learned how to maneuver my way through our life, being both a support system and lady friend. I witnessed more mornings than I care to remember filled with gasps and screams. The pain pills would make him fall asleep in the middle of a sentence and in meetings; he couldn't work. We missed parties, movies, dinners and life because he was crippled with nerves that wouldn't shut up. He tried desperately to remain positive it would all turn out ok, for him and for me. He worked hard at the illusion things were normal - he had to cling to that dream or it would all be for naught. And I did too - I was the loudest about it, because that would be the most important thing I could do, or at least control. Silently I sobbed as it became harder and harder for this truly, most fucking significant person in my life to remain capable, to remain
funny, to remain my partner, and to remain upright.
I would spend countless hours massaging his low back, waiting for sleep to reign down. He
had certain mannerisms that indicated it was coming and I would
breathe, knowing it was the only time he would
occasionally be granted respite. And that relief was for me, too. As
the pain increased, naturally so did the seemingly erratic behavior, the
anger, the depression. I was constantly adjusting to the unpredictable
whims of his nerves, which could lash out at any moment. It was exhausting; we both were exhausted.
If
you've never taken care of a person
with a chronic condition, needing a break may sound
selfish. It's not. It's such an emotional,
stressful existence for everyone involved, if you don't take care of
yourself you're no good to the other person. I had to master this on
my own. Dealing with the unknown and us being so young, I had
no one to turn to. These are old people problems, right? We're
supposed to have a bunch of years before theoretically facing any health junk... Sure, friends were around in the best way they knew how, but
there was no context for them to truly understand the type of
encouragement I needed, the support, or that my huge accumulation of
guilt was normal. I barely understood, let alone an outsider. I dissolved more and more as a person, to where I was
simply Travis'
caregiver - not his old lady.
His L4/5 was near collapsed.
His L3/4 was in jeopardy of doing the same.
~~~~~
For a long time, he bounced around from doc to doc, test to test, med to
med looking for answers and I was right there taking notes. We arranged speculative surgeries & implanted devices, hoping
we'd stumble upon the cure. At first, no one mentioned degenerative disc
disease, which was both hereditary and induced by his young-man weight
lifting. Initially, no one told us how long it had been progressing and that it
was a miracle he was still able to walk. He was put on hardcore narcotics by a surgeon, as a way to deal with the pain instead of correct it.
That person ended up abandoning him by refusing to answer our
phone calls, let alone refill the prescription he started. Mother fucker left
us cold and on our own to oversee a legal addiction. We finally found a pain management clinic who could properly administer the dosages, yet even they didn't diagnose his common acute illness depression. Never discussed or
suggested a therapist who could help talk through these traumas each of us were going through. By the end he was taking one of the highest
dosages of Oxycontin that could be given to someone not being
induced into a coma, who was simply waiting to die. His quality of life nearly becoming moot.
Now here's not to say Travis was never given option plans - he was. For a long time, we were never in a position to either medically or financially do anything about it, so that was fun. Some doctors were incompetent as was their office, some were dismissive and cruel, and others never made sense. In what would later became the procedures Travis got, at the time they were suggested either the risks far outweighed the benefits OR it wasn't even available in the US. This was the case for fusion and disc replacement. Both had been suggested over the years, even before I knew him. Fusion was common practice for collapsing discs. But in the early days, that involved taking part of his hip (rather than a cadaver bone,) shoving it into his spine, having it take well over a year to heal, his hip would be messed up forever, his mobility would be greatly compromised and in the end, there was little confidence the problem wouldn't persist or spread. yeah no. The disc replacement was a technique developed in Germany and had been used in Europe for years, so the orthopedic surgeons Travis was consulting with were stoked about that being the best option. But the US considered the device experimental and thus not
approved by the FDA. They loved it so much because the experience was basically opposite of everything fusion was. HELL
YEAH LET'S DO IT! But until 2010, it seemed completely unattainable for a couple of young kids, so it was like why the fuck did they even suggest this wondrous idea...
Desperate, I researched americans going to Germany for procedures and just like every other avenue we pursued, it too, became nearly impossible to materialize.
We weren't yet living in a society where our
government finally eliminated truly wrong pre-existing condition insurance clauses, which prevented people from getting the treatment they needed. His carrier was legally able to repeatedly deny most treatments, year after year,
especially the replacement. We appealed every time, provided boatloads of research and backup, only to be
disregarded by some general physician yuck who had no experience in spines. And not just like sorry, try again. Like seriously, we're
sick of you, stop asking, we said no, now pay us our $600 p/mo so we can
continue to service basically your meds. Good luck.
I call bullshite.
Being faced with a problem and no apparent solution, made
the tiniest part of me fall into hopeful denial he would just somehow
get well. The 99.999999.2% remainder of my brain knew better and it was
hopelessness, defeatment. I had no one
who could advocate on our behalf; I didn't have enough cash to buy our
way out, his insurance was a joke, at one point I even considered
writing the local news asking for help getting in front of the medical
review board... I was a 20-something lass who was alone. But I could
never let him know that, I never let anyone know.
~~~~~
Travis did have days where he felt better, which only meant 'ok
enough to do an activity beyond laying down.' Early 2010, we had just taken
delivery of a new couch and a few pieces of furniture needed to be moved
back, which I always insisted he let me do. Yet that day he offered to
grab a chair - it was maybe 10 pounds,
maybe. That was the piece that broke the Travis' back. Something popped and instantly became an entirely new level of pain.
bloody hell.
Weeks
after, although I don't remember the exact date, became our day
of infamy. I remember the moment vividly. He was laying on the older couch that hurt least, writhing
from side to side because he couldn't get comfortable, we were both
crying, he couldn't stop screaming from his bodies' inability to have of
a moment of reprieve. I had become accustomed to these ups and downs,
but this was an entirely different low. I often had Travis squeeze my
hand during flare ups, because it was the smallest gesture I could offer
to take any portion of the hurt away. That night was the tightest grip
he'd ever had, probably close to breaking my fingers. I never
asked him to stop. And instead of going through my reassurance rolodex,
I flashed back to a very scary & personal thought he shared with me
about suicide, not that long before this night. As I sat on the floor,
his hand crushing mine, looking at his face, assessing the state
of things, feeling like every second is a year, I thought to myself "I
understand wanting to make the pain stop. How could I deny him that..."
Yes. I did and it was the most real & compassionate thought I had at
the time. It's why I will always, fully support any legislation that allows people the right to die with dignity. You may disagree, but I've spent years facing this first hand and in certain circumstances when all hope is lost, that may be the only thing to eliminate the suffering. Most people will never experience a person going through
something like that; It's horrific and emotionally immeasurable. I get
it, it's some heavy shit. But you have to put on a different
pair of pants for a moment. If you have ever spent more than 5 minutes
with a person dealing with chronic, physical pain, especially one you
care so much about the word love doesn't even come close to conveying
how you feel, you would do anything to spare them.
It was right after that I knew I had to do something. This was not a life.
~~~~~
Through crying pleas for help, that's when I called our dear friend Kevin, who selflessly left band practice to come over. Normally, Travis didn't ever want to bother anyone with his pain, but Kevin was in a unique position to actually understand what he was going through. He was the surgical assistant to like the top US orthopedic surgeon who was now performing the disc replacements. For years, he & Travis had spoken about the health of his back and ways he could alleviate discomfort. But we never pursued consults because his boss was in such demand, he didn't take insurance. I knew how much our medical bills were on a regular basis, how could I ever think we'd be able to afford a top surgeon who only takes cash?! However, we found out that night, due to a long series of misinformation and misassumptions, we were wrong. We were so wrong...
Kevin gave us life changing information, which simply was "here's a hug, it'll be ok, call the office, tell them I sent you, and setup an appointment. They will work with you...." That was all it took (as I sit here crying, replaying all the years we fought to move forward an inch, were pushed back a mile, and he swoops in saving Travis' life in one conversation.) :-) We will forever be grateful.
With help from Kevin & adjustments to his medication, we were able to temporarily reduce some of the grossness until we could meet with the guy a month later. It's still difficult to think about Travis' high tolerance for pain and this reduction was simply getting him back to the crappy feelings he was used to. It was motivating in an odd way.
After the doc did his set of tests, we discovered Trav's L4/5 had deteriorated so bad disc replacement was no longer an option. Not what we wanted to hear, but the advances with fusion either eliminated or greatly reduced those initial challenges - so we agreed. And because we were now married and he was on my way better insurance, they approved anything related to said fusion would be covered. yes. For the disc above, L3/4, doc suggested doing the replacement since fusions often affect
the upper/lower vertebrae because of the stress placed on the joints. The replacement, in
theory, should stop any degenerating progression and he was a good candidate at that level. Yet anything related to the disc was 100% out of pocket. I wasn't going to let that stop us this time and vowed to make it happen. We sold stuff & took advances on several credit cards. You do what you have to, right?
Travis' major surgery to regain his life, was finally scheduled.
This certainly wasn't his first, but hopefully his last.
I don't ever want to revisit his backstory.
~~~~~
Cash out of pocket:
- $10,000 for the disc
- $12,000+ for the surgeon & operating room fees associated to the disc
- a few thousand misc dollars for other things I can't remember
Thankfully our insurance covered the fusion, hospital stay, $50 aspirins, x-rays, nurses who were amazing, etc. Their potion was over $300,000, which I couldn't imagine having to repay every cent of those exorbitant prices. I wish I could help the people who have to...
~~~~~
In Travis' words, from 30th November, 2015:
