Wednesday, 3 January 2018

Do Borg running out of batteries dream of Duracell Bunnies?...


The unfounded fears of invalidity...

3 years ago at the beginning of December, my cybernetic components were fully integrated into my bio-neural systems. The installation process was drawn out over 2 surgeries and a 6 month recovery. It was also difficult and rather painful, but ultimately a success to my satisfaction; though many only see wheels and sticks and believe it otherwise. But it wasn’t for them that I did this - I did it for me: for the life I want, and for my nearest and dearest to not live with pain too. My world fluctuated drastically in these 3 years - for better and worse - but I would pay that price all over again for everything I have today. Even the unexpected surprises and dips in the road along the way.

For over 3 months now, I have noticed a distinct drop in the neurostimulation and more of those inconvenient symptoms that I had forgotten were so severe. Having a good time, it seems, made me forget just how hard it used to be! It drained my own energy faster than I could recharge with enjoyable activities. Unlike my mental systems though, my neurostim is non-rechargable. Typical of many electronics, it started to malfunction just before the end of warranty (the IPG gave a 3-5 year lifespan guarantee and this started 2 years and 8 months old!). To be honest, getting that message telling me the battery was low was a huge relief! The CRPS wasn’t getting worse, I wasn’t on a slow and steady decline into the invalid camp. It wasn’t all insurmountable: I just needed a simple hardware upgrade. Solvable issues are much simpler to deal with!

I was told not to anticipate getting my replacement surgery until next year (early- to mid-january) because my neurosurgeon was fully booked for the rest of the year.  There was also the very real possibility my battery would fully empty and be no more before it could be replaced. December may not be summer on this side of the world, but things certainly slow down around this time of year as if it were. I was mildly annoyed, but I had already made my plans for mitigating the disruption to my general pain management stability. Stability is the prize I seek in pain management, not a reduction of pain. So, this was my own crisis plan.  

There is just one major problem: I am perhaps more vulnerable right now than I’ve been in a long time. The fluctuations between good times and bad times are far greater right now, than they have for many years. The memories of good times too fresh in my mind. And like similar vulnerable moments in my past - I stand to lose much of what I have gained, should I waver in my conviction. I could hold out if I knew there was an end in sight. There simply wasn’t any other option, because there is no going back, no second chances. This is the path I chose to walk, figuratively speaking.

Battery-save mode and higher stakes...  

In my own version of booting into “safe mode”, I had to pull back from things I love; from social circles and interactions. I couldn’t always play the same game of normality as everyone else. Luckily, there hasn’t been a lot of that in my life anyway! I missed out on yet more social occasions with nothing but pitiful excuses and feeling like a flake. 

My viewpoint on many things have changed though. While it sure hasn’t been an easy 3 years since the first “installation” surgeries, they are not years I remember as being particularly distressing or traumatic. If anything, looking back on them now with surprisingly rosy glasses isn’t delusional, but how I feel about these years as a whole. When the good times outweigh the bad, that’s a win in my book! There have been some dark times, but the darkness didn’t defeat me. Some of those good times were in very dreary places, with so much out of my control. I found my own peace in the acceptance that life is absurd, but yet in the absurd, is living. 

What was interesting on the whole though, is observing how the new “full-disclosure” policy would play out in practice. This is the first time I have been an open book; uncensored, unshielded and uncut; about my reasons for being absent. I tried to avoid TMI, or having it being a deep, dark and shameful secret. At least, trying to avoid the ‘too much UNINVITED information’: if I am asked, I’ll tell. Directly, factually, and God forbid - clinically. Still very much me, only no secrets to hide - why should I hide my reality anyway? I had no shame about who I was, felt it was no deficiency of my own to not be superhuman at this time. In fact, it was a glorious joy to have such an easily fixed and temporary situation for once! 

 This is the life of a cyborg, a disconnected Borg drone: needing upkeep of the electronic and surgical kind. This is what it entails. Of all things in my life; this is the result of the life-changing decision I took up wholeheartedly, with both eyes open. In deciding to get my neurostim, I took on all the risks and responsibilities. I accepted that failure could happen, through no one’s fault; that it may not work in the way that I hoped or expected. That included accepting that even if all goes perfectly, I still would need surgeries every few years, forever more. I could hardly complain now if things get a little unpleasant after regaining so much. Health wise, things are much different now. Hell, I’m different now. 

Like it or not, my asthma can be unpredictable without reason, which makes it all the more dangerous. 3 years ago, I would have 100% elected to get my replacement under general or sedation. I may have even been happy to wait longer for that. 3 years ago, I hadn’t yet the memory of spending 3 months all up over a 7 month period in hospitals. I certainly wasn’t in any hurry to spend any more time in those places than necessary. These days, the risks are much higher stakes for me, it isn’t a simple decision. Sure, I could take some prednisolon, nebulise, perhaps I wouldn’t have any issues under general. Was it really necessary though? I was already taking a tricky cocktail of medications, a delicate balance to keep all my systems from falling apart. This multi-pronged approach perhaps being the only thing keeping my asthma stable. I really did not want to test it out for something as minor as fear. As it was, I would need to monitor my blood levels of one drug, in order to take the prophylactic antibiotic safely to prevent the greatest risk of failure - post-op infection. 

Getting better acquainted with Fear: Pain’s other half...

Why bother with making life more difficult just from fear that can be overcome? It is illogical for me to be frightened about being conscious again during surgery; after all, I had already done the scariest part! Seems a bit late to be worried about stuff like that now, isn’t it? 

So, I decided the risks weren’t worth it; my fears weren’t worth it; the disruption to my life really wasn’t worth it. And, turns out - my time definitely wasn’t worth it. Electing to do it under local, I managed to be slipped in on the very last day of (elective) surgeries before the Christmas break. Merry Christmas to me on Yule’s Eve! Solstices, equinoxes and new years are all special days for me. I may even have been one of, if not the last, person to be operated on this year. I think I was able to get in so soon because it was so straight forward. No sedation, no anaesthetist, no vitals to watch, no recovery and overnight stay. In and out and home for dinner (I hoped, but I never count my chickens before they hatch!)      

After observing how far my fear played into my distress and pain of the former surgeries, I decided this time to make my own experiment. Why not? Something to keep me amused and distracted anyway, distraction being one of the more effective pain management strategies around! 

  • How will my experience be; how much pain will I feel if I go in there NOT expecting it to hurt? 
  • How will my experience be remembered if I treat this as a normal, every day thing to have done? 

Nervous anticipation is normal, a bit of apprehension too. However it is deep, primal fear that gets me in a distressed and panicked state that has greater ability to turn an experience painful than any medical experience itself. 

And should I find it unpleasant or painful:

  • It is merely temporary, unlike CRPS pain;
  • What can I do before, during and after the surgery to make my vantage point, my inner self, more tolerable in that powerless position? 
  • Is my fear an enemy to be vanquished, or befriended?

Fear has a huge effect on the flavours and tints of memories stored and remembered long term than the procedure itself,  or even a particular period of time. Pain is, in most cases, a memory of all past pains amplified. Anticipating pain can make pain worse in stranger ways than can be explained by a simple nociceptor response to actual injury. Pain morphs in our memories into scary nightmares that are burned deep and eternal. My body seems to have perfected the art - I wasn’t going to help it out this time!

Not only was this the perfect time to test these theories out, but also the perfect lazy time of year where I could recover in peace without losing too many opportunities to do that which I love. This is a blessing, something I am truly grateful for. It came all together in that wonderful spark of the divine, where I know it was for a reason. I know this feeling well from travel, and trust it. During this magical and mystical time of year when we, throughout history, have fought through the darkness, waiting for the sun. The nadir of winter to the return of Sol Inviticus.  


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