The software update that made my legs go offline...

... and what to call the offspring of a cyborg?

Pondering problems of a posthumanist nature

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!

My surreptitious squatter conundrum!

I have been somewhat absent in the virtual world since the beginning of the year. It wasn’t my plan, of course, but life rarely goes as plan. Actually, life has a way of not just surprising me, but outright astounding me - not to mention everyone around me too. Turns out, while I was getting my replacement neurostim surgery and all the dramas in the lead up to, and during; my body had a little squatter hiding away deep within - my little dutch kraker. I was also pregnant! I didn't even know it was possible, and yet.... 

I spent the greater part of the year trying to get my head around it, the marvellously ordinary miracle of growing a new life inside of me. And the sheer terror of being woefully unprepared and perhaps a shade too incompetent to be entrusted with a new little person to keep alive. Honesty, I’ve never really been the maternal, nurturing type who dreamt of marriage and kids from childhood. I wanted to see the world, experiencing the adventures far from the mundane. Though I always had an open mind, for the majority of my adulthood, having a baby was not even an option. I was embattled with Pain, finding my way in my new body and fighting through the workers compensation case. Most of the time just being touched was unbearable, I could barely see beyond the Pain. I was too busy hiding its presence from everyone else.

At 20 weeks....

The big choice to go with the neurostim in the first place nearly 4 years ago was to allow the possibility of pregnancy. Getting older, it seemed, made me not want to lose that chance at normality. Getting so severely sick just six months later, and spending over a year recovering from that threw a spanner in the works and put any baby plans firmly away. When you firmly put something out of your hear, it can ultimately become the reality without even trying. The universe has a sense of humour! But yet, even in all this - the crazy and unconventional - I’m fairly confident I’ll manage in the same way I always do: taking all the craziness as it comes. What other choice do I have? Life is like a box of chocolates.... 

This was no ordinary pregnancy. It is a high risk pregnancy from the get-go for both baby and I. The CRPS; the implanted neurostimulator, for which pregnancy is one of those “not recommended for pregnancy", to "Ah, no idea if it’s safe - can’t test on pregnant women - *shrug* no guarantees!”. Even though my neurosurgeon said they had not had any previous patients who had a full pregnancy with an active neurostim, they didn't anticipate it being much of a problem. I am disabled, which in itself is not the issue others make of it. It wasn't going to make it any easier. I don't even know if I can even anticipate the problems I will need to figure out solutions for just yet. I have ‘difficult to manage’ asthma that doesn’t always respond to treatment and flares for no reason. I hope it behaves itself. My partner and I are over 35, which isn't really old in the scheme of things and the least of my worries. 

A bigger issue was my medication list. It was not going to be possible to come off, or change, any of my medications. It took quite a while to go through the whole medication list, looking at any alternatives and consulting with my other specialists. None of them were able to be changed, it was too risky to meddle with the combination when there was so much at stake. I am certainly not the first woman in this situation. Many women need to continue taking medications while pregnant, but it is far from ideal. The difficulty too, was if one was tapered off, could it be the one that would make the whole jenga block tower completely fall apart. 

My mobility is already quite limited, and it would became more so as the pregnancy progressed. I knew that, but what could I do? Women who have far more issues than I are able to give birth every single day and manage, albeit with good support networks. Mobility itself becomes more limited just in the normal progression of normal pregnancy. It is possible that my asthma could get a lot worse in the third trimester, as all those wonderful natural anti-inflammatories released by pregnancy hormones dip lower. Which is why my pulmonary specialist ("longarts" - lung doctor in dutch) didn't want to change any of my medications, even the newer 'untested in pregnancy' ones. It might not even happen - why always think of the worst? What is the point of catastrophising, dreaming of things that might not even come up. All these things can happen even when I’m not pregnant, though perhaps not the ridiculous hormones and large belly! 

They did a LOT of extra testing throughout my pregnancy, which was far more medical than the vast majority of pregnancies here in the Netherlands. The Netherlands is a country of midwive-assisted home and birthing center deliveries, not the medicalised hospital birth that we are used to back in Australia (or the UK, USA and many other countries). But even for a medicalised pregnancy, I spent most of my third trimester in waiting room seats, 2 or 3 appointments at that hospital a week! I felt like I was already living there. All the testing, all the scans, all the medical care I received - all showed a very healthy baby. It wasn’t, however, an easy pregnancy by any stretch.

Pain not always the biggest problem....

And then at 28 weeks... yikes!!!

While it was a very different pregnancy than usual, I can’t say that it is all the more difficult than anyone else's because I have Pain. Pregnancy, by definition IS difficult: you are literally growing a whole new human being inside your body, one that must not only displace and squish your internal organs to accommodate it, using and taking from your power and energy reserves; then for it to somehow depart and crash its way out from the confines of your body after it has sapped all that it needs. One could call it the best kind of parasite. On the good side, I was fortunate to not have had morning sickness. Which was a good thing - I hate throwing up! I didn't even know I was pregnant for the entire first trimester. I got the shock of my life to see an actual baby floating around inside during my first scan. 

During a sizing scan around 28 weeks however, they found I had way too much amniotic fluid, called “Polyhydramnios”. During this period, I had ballooned from a respectable pregnant lady to the size of three houses and was struggling to actually fit into my tiny dutch kitchen and bathroom. This diagnosis was quite alarming, a frightening period for us. Having either too much, or too little amniotic fluid can be a symptom of a whole host of scary things. Things that were of my nightmares. The unknowables of my long medication list and the neurostim (or age, let’s be honest). That it could be my fault... the guilt I felt during this time was immense; hating that I could have put this tiny little person at risk because I was defective. I thought I had left those emotions far behind, but they emerge out when I least expect. That self-blame and self-hatred of having CRPS.

Turned out, I had been gifted with gestational diabetes. This may be something huge and scary for other women, but for me it was the biggest relief. Though a somewhat surprising occurrence, as I had already been through the joys of a fasting glucose tolerance test and passed. Hormones are funny things though, and the universe found it so amusing  the first time around that it wanted to give me another crack at it! And, so this fasting glucose tolerance test was a failure, something I knew already as I lay there on the paper-sheeted bed wanting to die in a pool of my own vomit! Often with gestational diabetes, being careful with diet and taking a brisk walk is enough to keep the glucose levels under control. With me, and the other lucky ones, the diabetes proved too unstable without insulin. I ended up needing to inject insulin 4x a day, before meals and bed, for the rest of the pregnancy. Injecting myself was far less difficult than it sounds, or even as I expected it to be. To be honest, by this point I hardly cared. Without insulin, I couldn't really eat anything. Outside of the diabetes I got some dizziness, weird sleep patterns (and dreams!) and lots of peeing, but those are normal symptoms that come by normal pregnancies. And the swollen feet and ankles... like CRPS, but not!

I do have more pain, even now. Normal people pregnancy pain, normal pain from walking funny because I have extra weight all concentrated on my front. Normal pain from my fluid-filled pregnancy ballooning swollen feet! And the inescapable: my normal CRPS pain in my legs and arm all turned up a few notches. Thank god I have that newer high frequency neurostim IPG! I think without it, I would have had a far more difficult time during my pregnancy, with the suicidal pain like I had before. Maybe more has changed in me than just having the SCS and time. When you survive what was the worst pain, what is the pain that comes after? When so much is at stake and so much to gain?

I knew that my experience: how I chose to process the pain could cause more stress on the baby and me, which is not healthy for either of us. My insomnia from Pain too, nearly drove me into the dark place. But pain that is Pain cannot be simply ignored, nor medicated away. The conundrum. It was also hard to ignore the upcoming risk of pregnancy and delivery (whichever way it happens) could cause further spreading of CRPS into new sites. I might be cold and pragmatic about it all, but I'm not completely divorced from my emotions and fears. The ever present catch-22. At the time I cannot afford to have an asthma exacerbation, it is it the time where I am most at risk. Keeping active is even more important for someone like me, but also all the more difficult when I have more weight to carry....

Nonetheless, I found an excellent physio. I often find that all types of manual therapists are very much a luck of the draw. Sometimes I just happen to find the absolute best for a particular situation or time by the stars and fortune (or hunches!). I think most are doing their best, but some rely upon outdated models with their biomedical limitations which prove to be ineffective and unproductive for pain. And for me personally, I was way too exhausted to even fight to get heard. I need flexibility; an ability to think outside the box to find unconventional solutions. I need someone who is willing to learn with me, to guide, but also who can brainstorm fun and quirky solutions with me. Someone with a sense of humour too, is vital! And that someone was a bubbly, enthusiastic girl named Sophie, who became my invaluable ally, and someone to whom I shall return to post-pregnancy.

So yes, it is a very complex and complicated pregnancy! But you know what? Making and building a tiny new person IS a complex and complicated business. But it is also the most supremely normal and natural thing I have ever done in my whole life. For all the weird, wonderful and downright abnormal things I’ve had going on. Internally, in the micro and macro worlds, past and present; this... well, this is something I will gladly experience. I have always wanted to live the most out of life, to gather the most experiences as I could in my short time on this planet. This is extraordinary - I've felt more normal than I have for most of my life. Even in the pregnancy-related oddities were still wondrous in their normality to experience. On to this new and grand adventure! 

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!