I’d like to emphatically state a few things for the record:
1. Even though I’ve never thought of myself as disabled, it’s impossible to deny the fact that I do have a physical disability.
It’s hard to believe that it’s been almost 3 years since my last (public) post here. Much has changed and a LOT has happened during my time away and eventually I plan on (publicly) writing about the important bits in detail. However, I’m here tonight to write about something that’s been weighing on my heart for the last couple of days.
For many of you out there (especially if you’re someone I know IRL), it’s old news that I suffer from chronic pain. It’s an issue that I’ve had to deal with since my early teens but only got to the point where it was disabling during my last pregnancy (i.e., my pregnancy with my son, Halsey, who is now four-and-a-half years old).
It began at around 18-19 weeks into this pregnancy, when I was once again forced to begin seeing a pain management doctor due to needing narcotic pain medication in order to treat the symptoms of a condition called pubic symphysis diastasis.
[I just found that if you search Google for this term, the first result is actually a resource page I wrote about this condition a few years ago when I was still a “Brain Behind the Band” and is archived by the Wayback Machine here). Ed.]
As if that wasn’t bad enough, the narcotics I was taking made me gain well over 100 pounds, mainly from fluid retention, because my liver hadn’t properly recovered from taking narcotics for approximately 20ish weeks or so with my pregnancy that had only ended a few weeks before my last pregnancy began.
Confused? Here’s a short math lesson regarding my back-to-back pregnancies:
* I got pregnant with my daughter, Coraline, in late August/early September of 2010.
* I delivered Coraline in late May of 2011.
* I learned I was pregnant again in July of 2011 (with twins no less!).
* I delivered Halsey in mid-April of 2012 (we learned at around 13 weeks that one twin had simply failed to develop).
* Hooray for having Irish twins who are only 10.5 months apart!
With a condition that made it feel like I had an ax permanently wedged into my pubic region, coupled with a massive amount of weight gained in a relatively short amount of time, plus a traumatic labour and delivery experience, and a sprinkle of postpartum depression and psychosis, I’m surprised that the only lasting effect was this TERRIBLE pain on the right side of my lower back, near my sacroiliac (SI) joint.
For this, I endured more than a handful of steroid injections into my lumbar and sacral vertebrae and quite a few “radiofrequencies” (a gentle term for what amounts to my doctor literally burning off the nerve endings in various dermatomes in order to eliminate the daily pain I suffered from). And when that stopped working, they decided that back surgery to implant a neurostimulator would be worth a shot, to see if that might finally get rid of the pain (and be the end of me having to take highly controlled, Schedule I narcotics on the daily).
It hadn’t occurred to me until now, but in just a couple of days (October 22) it’ll be two years since having that surgical procedure – the neurostimulator surgery that (only marginally) fixed the original pain issue (coming from the right side of my lower back near my SI joint).
Which brings me to the next point I’d like to make:
2. Having that surgery was one of the worst decisions I’ve ever made.
Having a neurostimulator implanted generally requires an overnight hospital stay. My hospital stay was damn near a week. For the first two days post-op, I was on morphine injections every 4 hours on. the. dot. and even then I spent the first 36 hours in so much pain that all I could do was curl up as best I could and just weep. “Two minor incisions” really turned out to be two four-inch-long gashes that required a combined total of approximately 60 metal staples – half in my mid-back (where the wired electrodes were implanted into my spinal column) and the remainder in my left hip (where the wireless battery that powers said electrodes calls home). And even though I was finally discharged after 6 nights in the hospital doesn’t mean I magically felt better. I was just tired of being away from my babies and was hell-bent on being home in time to enjoy Halloween (my favourite holiday of the year).
But that wasn’t the worst of it. Not even close. You see, in order to thread the electrodes into my spinal column, the surgeon has to do a procedure called a laminectomy, which essentially means that each side of one vertebra is removed (in order to make room to insert the wires). That’s generally all fine and good except the vertebra that the laminectomy was performed on is immediately underneath two vertebrae that are already fused together. (Remember the part where I talked about having had back pain since my teenage years? Well, it stems from this fusion a.) being located in an area of my thoracic spine which already doesn’t get much movement and therefore results in the thick muscles that support my spine constantly being in a cramped/tightened state, and b.) being congenital and not from a prior back surgery. Regardless, the end result is the same: the congenital vertebrae fusion and laminectomy essentially located in the same area means that all of the muscles that support that area constantly hurt. Muscle relaxers? I’ve tried every. single. one. my insurance will cover (which is 6 or 7) and they didn’t help in the slightest. Chiropractic care? I’ve tried it numerous times (with numerous providers) without benefit. TENS therapy? ZERO help. Ice packs and heating pads? Nope and nope. Literally, the only treatment that made my life worth continuing was continuing to take narcotic painkillers. Or lying down on a surface hard enough (i.e., not a bed) that it allows me to completely straighten my spine enough for the electrical impulses of my neurostimulator to hit the areas that hurt so that the electrical impulses mask the sensation of pain. Fun times, right?
Except, not really. Because apparently all some people see is me literally “lying down on the job” (i.e., lying on the dirty ass ground) when everyone else is “busting their ass.” And if that’s not what people notice, all they think is how unfair it is that they have to work a full shift (e.g., four straight hours) when I only work two or three straight hours. Because apparently all some people see is me sitting on the sidelines for 20-30 minutes and somehow think that I don’t make up that time by coming in to work for literally 20-30 minutes the next day (even if it takes me 2-3 times that length of time just to commute to work). Because apparently all some people see is me, perfectly able-bodied and just half-assing it in order to get something that they deserve and I don’t because THEY ARE working REALLY HARD and I’m just…not? Which brings me to the last point I’d like to make before I wrap this up for tonight.
3. Not all disabilities are visible. Remember that the next time you perceive certain behaviours as “lowering morale” because someone’s actions may be different than your own.
[I seriously doubt that those who need to read this will ever see it but on the off chance that they do, I’d like to say that nothing I’ve shared here is a secret and I’m more than happy to talk about any and all of this face-to-face. And I don’t mean that in a defensive or confrontational way. Seriously, just talk to me about it. Ask me about it. But whatever you do, PLEASE don’t make blind assumptions about it or about me. I’m about 99.4% as capable as you are doing any physical activity that you do – it may just take me longer or require that I make some modifications/accommodations in order to get it done. But it doesn’t mean that I won’t get it done because I will, even if that means I overdo it (which is often the case). One of my biggest fears is being thought of as weak and I will physically damage myself trying to prove that I’m not. Because I’m not. I look forward to each resale event because I genuinely love everyone else I’ve met who also takes part in them. Being pulled aside and talked to because one or more people seem to think that I’m not pulling my weight was heartbreaking to hear because of how much work I do. Yes, I’m a 20-hour volunteer and every. single. event. I’ve taken part in has seen me work more than 20 hours. And I’m not even going to mention anything about how every. single. event. has also meant my youngest son is hospitalized due to having another seizure. It’s pretty much the unfunniest running joke possible at this point. The good news? He had his seizure two days prior to this event’s set up. Hopefully we’ll make it through this one without another. (Fingers crossed.) Ed.]
Also (and completely unrelated), I’m back bebes! Just be patient and give me some time and I’ll have this place feeling like home again in no time. <3