... and what to call the offspring of a cyborg?
Pondering problems of a posthumanist nature
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| My neurostim - the control center |
It has been 4 years since my life changed, when I got my spinal cord stimulator fully installed. Of course, it’s been a very dramatic rollercoaster 4 years with many dips and turns. For all the information I read about it being a “minor surgical procedure”, it certainly wasn’t the case - don’t believe everything you read! I don’t know if it is different techniques, or just different countries, different surgical specialists. But with each step along the arduous process of getting approved here, I was constantly reminded that it would be no walk in the park. I was in hospital overnight for both surgeries, 3 months of very strict rules about activity (no bending, twisting, raising arms, lifting more than 3kg etc.) and it was 6 months before I actually felt “recovered”. I have since had a C-section for the birth of my son. In contrast, the C-section was relatively easy, far less painful, and I felt so normal after a few days, I forgot I had even had the surgery. A gorgeous tiny baby can make anyone forget about how they entered the world pretty fast!
That C-section was the fourth surgery in 4 years, and brought my hospital incarceration total up to a full 12 weeks. If I added all the hours I spent sitting in hospital waiting rooms, or the long list of different specialists I have seen over that time, it would be far longer. No wonder I am so slack with writing! Still, it doesn’t really bother me that much. It was in all these medical, social, physical and psychological dramas where I found my voice. I finally began to own myself, accept that defective body of mine and learned to work with its limitations to break through them. I survived it all, and thrived in the end. All the proof I need is in my sling right now - my son, my little miracle baby. The baby I never knew I could have, my little SCS-zapped bundle of joy.
What does one call the baby of a cyborg? Cybaby? Cymini? Baby borg? Even with my rather good research skills, it was damn near impossible to find any information at all about women who had carried a baby to term with a neurostimulator running full time. There were a LOT of warnings about it being untested, or not recommended. Or that the neurostim strictly should be switched off for the duration of the pregnancy. There are a few published case studies in the medical literature, but they were very few and far between. In more than a decade experience in this specialised field of neuromodulation, I am only one of two patients of this hospital who fell pregnant and gave birth with a SCS; but the first with CRPS and who had the neurostim active. My more complex medical history made it even more unique. That was a little unnerving for me to find out, but the average age of patients is in the 50s, so it was unusual for pregnancy to even come up. There are no guarantees in life, even in the rigorously studied and tested fields. I did win the lottery, but I also knew there were many risks each step along the way. I was in completely untested waters.
Without the SCS, I can barely walk, barely sleep nor retain my own sanity. My medications were on higher doses, and I was essentially housebound. Most women wish to be able to follow the ideals of pregnancy: no medications (no untested neuromodulation), good diet, frequent exercise, all natural; well, let’s just say my pregnancy was different. No woman would ever want to put her baby at risk, but the risks to my health (and consequently - the baby’s) were too great. The times I was flared up, I felt the baby’s activity change in alarming ways. I do not believe I could have carried him to full term without the neurostim and very thorough and comprehensive multidisciplinary care.
I was actually very fortunate to get my replacement IPG a year ago. The first lasted just short of 3 years. The hardware upgrade was fantastic, far more one-handed user friendly with no wand to hold in place while searching for signal and changing settings. Everything is an app and bluetooth-integrated these days, even implanted neuromodulation technology. My ipod patient controller means more to me than my phone! I tailored my programs to different tasks, and different times of the day. Which meant I get far better use out of the neurostim than ever before. Even heavily pregnant like a beached whale, I was still able to go out and live my life. I cannot be more pleased with it! It gave me my life back. My quality of life is far higher, and my pain management runs with far more stability than ever before. My pregnancy was difficult, but it could have been impossible, unbearable.
Even in the first 6 months of my baby’s life, I have managed quite well. I am in more pain, but I expected to be in more pain. The price of having my son is worth the extra pain I have. The pain remains severe, but manageable after everything that I have gone through these past 18 years. I am figuring out my adaptations, but I am struggling far less than I expected to physically. I am less mobile, less able to live the life I lead before. Which is normal. To be honest, it is the most normal experience I have ever had in my life. I always wanted to be normal. Normal pain, and freaky Pain combined, but there is no mother, no parent or caregiver of a baby who doesn’t experience the highs and lows of caring for an infant. And every one of them is willing to pay that price, for the joys of tiny fingers wrapped around your own, and bright innocent eyes staring deeply into your soul.
All was well… Until it came time to update my patient controller to iOS 12. That’s when it all went to shit!
The pitfalls of being bluetooth integrated…
For security reasons, I need to make sure the updates are stable and approved by the neurosurgery before I do them. Which I tried to do yesterday at my yearly checkup. It wasn’t installing, so I waited until I got home. In the meanwhile (the journey back home was 2 hours), I could either have the neurostim turned off, or on maximum with no ability to change the settings. I chose the latter, as I rely on it so much to actually walk, and the pain is masked enough that I don’t go crazy. I had an emergency magnet, in case it got too much and I needed to turn it off. The magnet is like an emergency stop, and it also works as a coupler/bluetooth pairing and reset. I never carry it around, for fear of wiping my bankcards! I got home, and tried again to install the update, and still could not make it work. After looking at apple support, and googling, I saw that this was an issue that wasn’t just neurostim patient controllers, but a common one for many iphones and ipads. It was suggested to try installing the updates through itunes, which was a roundabout way to get it to install. I fired up the (windows) desktop, which drives me batty because it itself is slow to update (because it is infrequently turned on), but I patiently waited and waited and waited while it went through its own updating….
Finally, I was able to install the iOS 12 update through itunes, but it was a rather tedious. Phew! I thought. Finally, I can turn the “outside maximum” settings down to “around the house moderate”. I followed the instructions to add the IPG and pair it with the app. Nothing is ever simple, though. It took countless attempts to even see the IPG, all the while I was waving this magnet around my upper hip like a lunatic, pushing it deep into my bare skin, wondering if all my post-partum fat had made the pocket too thick for the magnet and IPG signal to connect. Actually, fat needs to be deeper than 4cm thick for that to be a problem. Mine wasn’t, but I am rather annoyed by the vain concern of my plump post-baby figure, and was clutching at straws to explain what was going on! Finally, it was recognising my IPG, and the stimulation shut off. I was frazzled by this stage, but glad I was getting somewhere.
Until it wouldn’t pair up. Nothing I tried would work. What is worse, the longer it took, the more my pain was returning and the less I was able to problem solve with a clear head. When I run the cyclic programs overnight, the neurostim is only off for 10 or 20 seconds while it is on for a minute. It leaves a sort of ‘echo’ of stimulation that doesn’t dip into pain, while being more economical with the battery. It also ‘tricks’ my brain, allowing me to get greater function (perceived sensation of stimulation) out of lower settings than if I had it continually on the same continuous setting. Variety is the spice of life, and the brain gets just as tolerant of stimulation as it does of medications. I still have pain with the neurostim, but it is vastly reduced and barely registers (usually sitting around 4, as opposed to 8 or 9). It’s like a constant static drowning it out. I still have flare ups, but as a whole, the pain is far more stable. Stability is far more important to me than peaks and dips.
The real-life Cruciatus Curse….
This pain intensity that returned was of distant memories of existing in this state, slicing me apart - unmasked and unconcealed. Raw pain that brought tears to my eyes, made me want to cry and scream. Pain in the 9s, fire and ice, red hot metal pokers ramming into my bones, my skin being scratched off and burned in acid. CRPS pain that makes me want to die. I used to have this all the time for many years, invading 3 limbs. These days, with the neurostim, it was just in the one arm, and far easier to manage. I don’t remember life before my arm being stolen by Pain. But I remember crystal clear what having pain free and mobile legs felt like. I had never fully comprehended how much having the neurostim has changed my life until now; never been more thankful for it, nor more desperate for its relief. I never appreciated just how much it has given me, until it was gone.
I was in more pain than I can express, pain that is unrelenting and almost causing me to pass out. I was cold and shivery, my legs and feet turned white and icy. I could barely string a sentence together. Just when you think you have felt your worst pain, there is always a pain that is far worse and make you wish it all to be over. I knew the mechanisms behind it, plain old sensitisation at work. I wasn’t in danger, it was merely a sensation my brain was interpreting differently because it wasn’t being drowned out by white noise. It would only be temporary, until my legs were back online - when my implanted bluetooth IPG will reconnect with my controller app, it would lessen. My pain will never end, but the neurostim made it bearable.
It was a rather fascinating experience, as I forced myself to view it as such. I was once again in the position of pushing myself to externalise the pain, rather than losing myself and my sanity to it. I had fought way too many battles in this ongoing war on nerve terror to give into such a minor skirmish. Especially one that would have a solution. I knew from past experience that by becoming an observer, whatever was happening to my body, or inside my body was mere perception, sensory data - nothing more. I could not let my emotions amplify it any more than it was. It was hard to contain my terror, to keep my mind from descending into chaos and destruction.
I was in Hell. Anguish. Pain. But it was a different hell to before. I knew this hell, I had survived it many times before. I knew that there was a solution, I just had to hold out one night - what was one night of hell, really? There was a dark humour in the realisation that I was in Hell this time because my legs are bluetooth integrated, and I needed to speak to tech support for my body. I had reinstalled and rebooted and it wasn’t helping. I really am a cyborg - the software update that crashed my system!
Tech support for cyborg dummies….
My particular problem wasn’t one that the local Apple store Genius Bar could solve, but damn it - I wish I had tried! I would have loved to have seen the face of the poor bugger as I explained my particular iOS 12 update problem: “I’ve been waving the magnet over my hip for ages and the bluetooth just isn’t connecting!”. It was lunchtime before I got the call from my neuro nurse specialist (she had been in surgery). Turns out it was an issue that maybe the Genius Bar could have solved; perhaps even I could have solved it had it been for a keyboard, or headphones. Not with Pain screaming in my brain, my legs being hacked off and crushed. I had to go into settings and forget the old device, then retry. So simple was it!
A few swipes, another magnet wave over my hip and my IPG and ipod app were connected! I cranked that bugger up to 90hz and level 13 for a good half hour before dropping the levels, 90hz is my usual “outside” frequency. Usually at home I can manage on 50hz and level 10. I was still flared up, but the relief was glorious. My white noise machine in my spine!
