When it all gets to be too much, I tend to go quiet. This is a repeating fact that I cannot deny. There was a time when busting out a tearful post came to me like magic and left me feeling purged and somehow better but lately the words don’t want to come (and the damn fingers don’t want to type and I’m over that too). It’s beyond unsettling for me when words fail me because I have always found words effortlessly, as if they flow from my fingertips independent of my thinking brain without impediment, but lately my broken fingers seem to be representative of my broken flow. See? I just took an entire paragraph to explain how crappy I feel about struggling with writer’s block. This stuff almost writes itself. Or not, as the case may be.

My baclofen pump isn’t really working for me currently, you see, and it feels like a failure.

I started this year with 4 weeks of inpatient rehab after pump implant surgery in February followed by 6 months of working every day to “come back.”

I had a month or two of getting some much-missed independence back as my limbs seemed to come back to life and things like sleep were no longer stressful. I was walking down to the corner of my street and back again – almost 400 amazing feet. I occasionally made it up my five front steps to my porch. I thought I was out of the woods. I thought I had made the right decision for managing this bitch called severe spasticity and I was feeling hopeful. I was standing up in my kitchen making myself tea and feeling a bit smug. I just knew it would be soon that I’d be driving with the top down again. It was only a matter of time and work and I was proving to myself daily that I was strong enough to do that work.

Then a herniated disc put me in the hospital for 5 weeks (again) right as I was preparing to make my triumphant return to work after my longest hiatus ever and it seemed as though my spastic limbs were in overdrive. A freaking herniated disc! I mean…seriously. How boring and completely unforeseen.

That banal experience was nothing short of soul crushing, I’m not going to lie. Five weeks in inpatient rehab during a pandemic is no joke. I felt desperately alone. I felt like the hospital staff became my family because they had to be which made me somehow happy and incredibly sad at the same time. I began to realize that a wheelchair was going to be a permanent part of my life because we didn’t seem to have a plan for treatment that didn’t involve surgery and I didn’t have another long hospital stay in me in 2020. Nine and a half weeks inpatient was more than enough. Epidural steroid injections seemed like an option until that didn’t seem to work either.

My physiatrist, Dr. Franz or Franzi to his favorite patient, seems to be as frustrated as I am. We’re not going to keep adjusting my pump higher because it doesn’t seem to be helping. We’re both hoping an upcoming MRI sheds some light on what to do next, but I have to tell you, I am almost out of my stores of hope coming from yet another procedure or test. They’ve all been rather murky and not-terribly-helpful up to this point…why would this MRI be any different?

So here I am. Low grade disc-related discomfort. Spastic lower limbs that barely want to move no matter how hard I work. Transferring from my wheelchair to any other chair, including the toilet, takes a ridiculous amount of effort. I haven’t left my house for anything but doctor appointments in months. I. missed spring. Then I missed summer. And now I’m missing fall, too, my favorite season of all. I shower once a week with my occupational therapist who somehow manages to make it less overtly horrifying, but even so, it crushes me that I can’t even shower myself anymore. Steroids have left me fat and bloated, living in a body I barely recognize. I can’t get to the salon so I’ve gotten used to my naturally salt-and-pepper hair that lacks the style punch of my usual platinum blonde strands. I keep up with my elaborate skincare routine mostly because it’s something I can manage while seated in my wheelchair and it gives me something to do before I drag my dead limbs into bed each evening slightly earlier each night as the ever-earlier fall darkness gives me an excuse to watch television in bed even if it’s not technically nighttime. But that doesn’t stop the nurse in my urologist’s office from thinking my sister, who is two full years older than I am, is my daughter. I look that haggard. Well, that and I may or may not have been dressed in yoga pants and a t-shirt with cats on it while my sister was in a cute printed dress and Doc Marten’s – an outfit I would have worn myself a few short years ago.

Speaking of bed, my ever-stiffening limbs have ruined bed for me, too, because it’s not only difficult to contort myself into the elaborate positions required to get my legs into the bed but then once I’ve binged some Netflix show or other and it’s finally time go to sleep – it’s terrifying to lay down. That’s because once I’m finally in my modified fetal position for sleeping, I know that when I wake up with the urgent need to pee there is a good chance I’ll be temporarily stuck in bed when my legs refuse to budge. Those five minutes of terror every three hours or so, wriggling around my bed grasping at my iron headboard desperately trying to pull myself up with my arms hoping not to fail and end up peeing in my bed, have ruined bed for me. Again.

Ironically, the new medicine I’m taking for my urinary frequency allows me to sleep for longer stretches between bathroom trips but instead of being a good thing this actually makes it even harder for me to get out of my bed. The longer sleep time makes my spastic limbs even more rigid. Even when something seems good there seems to be a flip side to bring me down.

I remember writing a while back after my pump surgery that if the only benefit I got from the pump implantation was relaxing sleep – a return to my love of my bed – it would have been worth a month in the hospital recovering and 6 months at home rehabbing myself back to life. The thing is, bed is back to being a less than happy place.

It’s been over nine months now since my surgery. I wanted to be better than this by now. I thought this would be the thing that would really help improve my quality of life. But here I am. Buying leg lifting straps off of Amazon so that my rigid limbs won’t be so terrifying to lift to get myself out of bed. Also, don’t search for “leg straps” on Amazon if you don’t want to get a bunch of ads for bondage equipment. My OT and I found that out the hard way.

The MRI looms as does my suspicion that I’ll come out of that tube with as many answers that I took with me as I went in. I have no idea what the plan will be for a pump that doesn’t seem to do what it said it would do. And I need a plan.

Until then, will be at home. Looking out my front door watching the leaves on my maple tree turn yellow for the last time because very soon I will be moving from this house that I love into a completely different kind of house that I know will be better for me in every way but right now all it feels like is scary and strange.

I am looking at blank spaces on walls in my current house where my favorite artwork used to hang. I’m packing up closets full of cute clothes that I haven’t worn in literal years and wondering if I will ever wear those clothes again in this new place that I hope will eventually feel like home. Maybe I should just send all of the clothes and shoes I haven’t worn to Goodwill and be done with it. But I don’t do that. I’m not even sure why. Those clothes represent a life I want to live again. A life where putting on a cute outfit feels fun and creative not futile.

I’m incredibly lucky to be the beneficiary of the help of some amazing friends who are helping me pack up 20 years of stuff and memories while I roll around in a wheelchair being mostly useless saying things like, “Keep…toss…donate…” as I feel overwhelmingly guilty for saying “toss” to my wedding album because I haven’t looked at it in almost 20 years.

All through this I’m trying to find my place back at a job that I’ve been away from for 6 months. To say it’s been strange trying to get back into things would be an understatement. Half a year is a long time to be away in advertising but in the time of Corona, it’s even longer. Nothing is like I left it. My job is something new and nobody is quite sure what that new thing is. I try not to obsess over this fact while I prepare to close on a new house. Hoping at the same time that my current house sells quickly in late November when I’m finally out of it, at the possible worst time ever to sell a house.

You might be getting the impression that I’m a tad overwhelmed and feeling a bit hopeless and that is also a source of stress. I should be feeling grateful. For still having a job when people with disabilities are still twice as likely to be unemployed as able-bodied people. For having the ability to buy and move into a more accessible home – a thing as common as a goddamn unicorn in the disability universe. For being surrounded by friends and family who come to my aid for all the rides, all the packing, all of the things that a needy disabled person needs. For health insurance. Even for the potentially deadly from porch wheelchair ramp! And I am grateful for all of these things and more.

I’m just tired. I’m tired of being so broken.

But that’s the thing about having a progressive, chronic illness isn’t it? It’s kind of in the actual definition, right there in front of you. It can’t be cured and it WILL get worse. And sometimes you just get tired of that very obvious truth. Sometimes you yearn for the next extreme treatment decision you make to actually work. Sometimes you want to decide on a course of action and have it lead to something a little bit good instead of turning to shit.

Funny. I got a FedEx package today from my new best friend Novartis telling me all about my new great white disease modifying therapy hope, this one a monthly self-injection called Kesimpta. It’s getting great buzz. Then again, ocrevus was supposed to be my miracle. Then Lemtrada. And we all know how those turned out. I also find it somewhat humorous that part of the reason I chose this new miracle drug is that I won’t need to ask anyone for a ride to the infusion center in order to receive treatment. I’ll just jam a needle pen into my thigh once a month and call it a day. I guess there are worse reasons for choosing a DMT?

I guess it’s been a while since I’ve been this dark. It was probably time. I can embrace it knowing that the bright will come back. It simply has to. And until it does…I’ll try not to let the dark consume me.