I don’t remember when I started listening to the band Morphine. I know it was sometime in the late 90’s when I was working at Ketchum Advertising. The creative people there with whom I’d become fast friends were always hooking me up with new music I’d never heard of. It was like work heaven to me. A career that felt more exciting than it had any right to feel, working alongside the coolest people with the best taste in music ever.

Morphine. The Pixies. The Sundays. Kristen Hersh and Throwing Muses. Belly. I could go on and on. Just the names of these bands bring me back to that time in my life with an almost visceral impact. I remember the black wool jumper with the oversized black plastic buttons down the front that I wore to work with a gray turtleneck underneath, black tights and the ubiquitous Steve Madden platform shoes. I had a chin-length brown bob.

I wanted to be as cool as my new friends were but I was anything but cool.

It was around this time that a certain group of creative folk dubbed me Gidget. I was that uncool. I was perky? I wore clothing from Ann Taylor. I wanted to be who I thought I was supposed to be so badly. I had the uniform down, that was for sure, but this cool new world full of creative folk who knew so many interesting things I didn’t? I just wanted them to like me even if they did insist on calling me Gidg for short.

I accepted any and all mix CDs my knowing new creative friends would pass my way with customized cover art and song lists designed in Photoshop.

When one of my pals introduced me to Morphine my mind was a little blown.

I’d never heard music like that before. That deep alto sax and the recordings that sounded live even when they weren’t. I listened to the record Cure for Pain by Morphine until the CD was scratched to shreds and skipping in the five CD disc changer in my car (yes, I’m that old). When I first started listening to this odd threesome, I thought for sure the recording was warped or something. Morphine sounded unlike any other band I’d ever listened to. They sounded good bad. Or bad good? Something like that.

It was an epic album, an anthem of sorts for the 1993 Boston music scene, which seemed like a scene I would have dug at that time in my life but I’d missed it entirely. I was too busy preparing to become the perfect wife and advertising executive. I didn’t discover Morphine until many many years later when I went down my own personal rabbit hole, the one called being a sudden 30-year-old widow.

In other words, I found Morphine at just the right time.

That song, though, that title song! It got played on repeat. Morphine’s penchant for lyrics that cut through my skin and pierced my heart was what made me go back to their music over and over again. I mean, seriously though:

I wanted to live in the cave where the wise woman went and goddamn, that money thing? I was choosing openly not to learn that you can’t fill a black hole in your soul with expensive outfits and a used Mercedes-Benz sedan. All the money I spent, indeed. More like all the credit card debt I thought would somehow never catch up with me? Stop laughing. It’s not nice.

I’ve taken to listening to Morphine’s Cure for Pain record again and it’s like it’s new to me all over again. See. Here’s the thing.

I thought I knew from pain. I thought I was a pain expert but it turns out I was a fraudulent asshole who didn’t know pain from joy (pump it up, pump it up…the reader who gets that song reference is gonna get some as yet identified prize…).

MS, I’m sure won’t be shocking to anyone, comes with it’s fair share of pains.

Everything hurts at one time or another. The leg pain that came from extreme spasticity was indescribable not that I haven’t tried to describe it hundreds of times on this very blog. Back pain that comes from having a janky gait. Neck pain that comes from janky gait coupled with terrible posture that comes from sitting or standing funny because…because pain.

The random pains that just seem to come out of thin air, that defy your sense of control and belief in a life full of good things, if only for the time it takes for the random pain to go away again as if you might just have imagined it in the first place but no. No you did not. Those random unexplainable pains are so very, tangibly real.

Nerve pain! That delightful pain that feels like your skin is actually on fire for what feels like time eternal or becomes inexplicably ice cold, like frost bite on the frozen tundra cold, and then somehow morphs into a strange tingle not unlike how it feels when a Normie sits funny for too long, but also feels absolutely nothing like that sleeping limb feeling at all the very next minute. But it hurts and you can’t describe how it hurts in every single instance because it’s just always changing.

My struggle as of late is with arm, shoulder, neck and back pain. Mind you, these are the parts of my body that are typically kind of ok? Right. I’m as happy about it as you probably expect.

My massive amounts of spinal cord lesions keep most of my pain and MS symptoms below the waist. I kind of took my less painful upper body for granted. I didn’t worry too much about my upper body because it did such a great job of making up for my ridiculously uncooperative lower body. I lifted weights. I did modified push ups on grab bars. I knew I had to keep my upper body strong because you know those asshole legs were going to fuck things up.

Enter the wheelchair. That glorious tool that has enabled me to get back to moving around (if incredibly slowly and terribly awkwardly) but Idris, my personal Quickie 2 manual wheelchair was a life saver.

Good old Idris. He supports me. He helps me get from room to room without fear of falling to my death (or at least to my next inpatient hospital visit which might actually do me in anyway). But Idris allows me to not live in constant fear of falling over because Idris? He’s got me. He’s not letting his woman fall down. It wasn’t love at first sight for me and Idris the Wheelchair in quite the same way it was for me with Idris the actual hot actor who is my pretend significant other. It was a more grown up love that developed between Idris the wheelchair and me.

Idris the wheelchair has grown on me no matter how many times I’ve cursed his very existence or how many times I chose to not use his given name but just refer to him as “stupid motherfucking wheelchair” out of sheer desperation. He sets me straight immediately. He forces me to stop being so childish and start being gracious.

In the short time we’ve been living together, amid all of the many ways I’ve come up with to verbally abuse him, I know it would be hard for me to do this thing called life without him. I try to remember to tell him I love him at least three times a day. It usually happens when he’s helped me get to the bathroom with time to spare but that doesn’t mean it’s not heartfelt. Bathroom protestations of love are in no way less sincere. My husband would have vouched for this truth.

Idris knows I’ll never let some baggage handler hooligans manhandle him or allow my sister to scratch him all up as she attempts to shove him into the trunk of her sports car. No matter how badly I behave, he’s there for me.

Until recently when he’s apparently started trying to kill me. Idris is a big part of the puzzle when it comes to explaining the level up I’ve been experiencing recently as it relates to pain.

My arms ache constantly. My neck is tight like it’s full of twisted steel ropes. My mid and lower back feels like it has giant clamps like the kind they use to capture grizzly bears for tagging but these clamps are closing around my back muscles.

It’s hard to stand up. It’s hard to transfer from Idris to any other seat I use in my daily life – yes, that includes the toilet. No matter how many grab bars you have, you’re still forced to use your arms to grab them. It’s right there in the name. And it hurts lately. It hurts a lot.

This situation can’t entirely be blamed on Idris. It also has to do with a baclofen pump that we set a tad too high over the course of the last few months.

It’s that whole spasticity conundrum I’ve written about before. Tone (tight muscles) and weakness (muscles that are too loose) often result in eerily similar presentation: knees that lock, legs that won’t lift off of the ground, limbs that feel heavy (because they’re too loose and have no get up and go or because they’re so tight that attempting to move them feels like moving legs made of solid steel). We kept cranking my pump higher, mainly at my insistence, when it was the exact wrong thing to do. Because. Well. Because MS.

When your legs are too weak you tend to compensate for that weakness by relying a bit too much on your arms. So that’s been a real factor in my current pain level increase.

But Idris is doing me no favors when it comes to my upper body pain, either. Manual wheelchair use is also super hard on your body.

During a recent visit with the home health equipment tech, I started talking to him about how it just didn’t make sense to me that I’m always in so much pain. Like, I fully expect my legs to be jerks. That’s their role in life and they take that role very seriously – like Oscar-level acting levels of serious. But these last four weeks or so, my upper body is absolutely killing me.

As my wheelchair tech so eloquently put it, “Arms aren’t built to work like legs. I mean, you can build them up and they will get you around but unless you want to dedicate your life to body building, it’s going to come at a cost. And that cost is you’re going to be in pain.”

So all of this time that I’m beating myself up wondering how the hell I can be so tired all of the time when all I do is sit all day…um. Yeah. I’m dumb smart not smart dumb? Or something like that.

Here’s the thing, y’all. Pain messes with your mind. It makes you wonder if you’ll ever be happy again. It makes you dread moving around because moving around hurts but not moving around also hurts so now what? It makes sunshine feel threatening and it makes heat (or cold) feel like a mafia henchman standing behind every corner waiting to break your kneecaps or whack you over the head with a blunt object.

I wasn’t ready for my pain to become the full-body variety that has hit me as of the last month or so. I know people, I love people, who are in so much more pain than I am and have been for a very very long time. I try to learn from their example. I try to be optimistic and gracious and always, always aware that this time I’m in, this time right this very minute, might be as good as I ever get to feel. And I shouldn’t squander it. When one has a chronic progressive disease one should do the opposite of squandering at all times.

I really shouldn’t allow myself to give in to the darkness where that constant pain tries to lead me. I need to figure it out. I need to sit with it. And make friends with it. Or I need to try to make it my frenemy at the very least. I’m not doing the best job of any of that right now, hence why writing has been a little more difficult than usual. The pain thing also affects my wrists and my fingers and my neck that needs to look down when thumb-writing on my phone when computer writing just isn’t gonna happen.

I have a few things in the works that may help me with this painful situation in the long term.

I’m waiting on insurance approval for some slick new motorized wheels for Idris. That’s going to take some time and I need to dig deep and use my super-able brain to find the grace to not go dark while I’m waiting on the American health care system to crank up and move the gears toward making my new wheels a reality. Idris deserves these slick new wheels. Idris deserves everything and then some.

On another track, I’m continuing to work my pump setting down to help strengthen my legs (without going so far as to bring my spasms back). That’s a crap shoot and one I’m becoming better at mentally handling a year and a half after my baclofen pump surgery. It’s still a mind fuck, don’t get me wrong. I always get completely nuts’ed up after we do an adjustment. You just never know what to expect! But I do the typical 36-48 hour post-adjustment self-observation to gauge how the latest setting is sitting and hope for the best.

It’s Botox week so I’ll be shooting some stubborn cranky muscle groups with the magical toxin that will help the muscles that my pump doesn’t do so much for, relax a bit. Like my claw-like toes on my right foot. And my always obstinate ankles. And we might even see what we can do for those nasty back muscles too? Yes. There will be a lot of Botox being shot into various parts of my anatomy, sadly none of it will go anywhere near my haggard-looking old lady face.

Then on Friday I have my appointment with my pain management doc. I haven’t seen him in a year mainly because, well, pain wasn’t such a huge issue in my life in the last six months. So it is an issue now, as is often the case with MS and pain, so we will explore all the things – perhaps another epidural steroid injection in my cervical spine to kill the pain the comes from my annoying herniated disc situation? Maybe some other magical nerve block thing that can help me avoid surgery but still give me some pain relief?

I guess until they find a cure for this full-body pain situation I won’t be throwing my drugs away, as Morphine suggested back in 1993. I mean, my pain management drugs are 800mg ibuprofen and extra strength Tylenol so it’s nothing to get all excited about. But yeh. I won’t be throwing them away. I’ll keep taking them. I’ll keep cursing them for not really doing a whole lot and keep trying to sit in the room with this unpopular guest called full-body pain and try not to lose what’s left of my damn mind.

As Morphine would say, “I propose a toast to my self control.” I can do this. I have all of you in my corner. I can do anything. It might be crawling helpless on the floor, my self control, but at least I still know where it is.

Right?