I used to visualize multiple sclerosis as a journey. A rather complicated journey in a foreign country where directions and destinations are ever-changing and I don’t speak the language.

Lately I visualize multiple sclerosis as a complex maze. Kind of like the one pictured up there where there are various places as you make your way through where you can see light shining in. But many of the places you find yourself in as you continue to make your way through the maze, the light can be hard to see or seems to be gone entirely.

I’m feeling muddled. I’m trying like hell to hold shit together and be positive, looking forward, MS-doesn’t-have-me Beth, but lately it’s just gotten to be a bit much.

I realized recently that my mobility has taken a real turn for the worse since my last relapse in July of 2017.

Mobility has always been an issue for me from the very beginning. I mean, having trouble walking was one of my first symptoms. Weird feelings in my legs. That “legs-not-legs” feeling that confused me as I was enjoying a walk around the reservoir at Highland Park. Having to sit down after one quarter mile lap. Being super confused why I suddenly couldn’t do easy things (like freaking WALK) so easily anymore. Walking has always been an issue.

Ampyra helps. To be honest, it hasn’t been helping all that much lately but I live in fear of stopping it because any time I’ve ever done that by accident, forgetting my second dose for example, my legs become completely useless almost immediately so I’m terrified to test what life would be like without it. Especially not now when I have big things going on at work in the coming week that require me to be physically present on a schedule in places not my office. I’d be a liar if I didn’t admit that this is messing with my head big time.

After my relapse, when I was so unsteady on my feet as a result of vertigo, I finally gave in and got myself a cane. I had to accept that my unsteadiness was impacting my life. I was having trouble even getting to my office when I valet park right across the street. I was feeling home bound and antsy. I rarely left the house (beyond going to work) and when I did I’d become instantly frustrated because it was awkward learning to walk with my cane (sorry, Stanley, I know you try). To be honest, when my legs are dragging like dead tree stumps a cane doesn’t do a whole lot to make my legs walk any better.

I remember at my very first appointment with The Great Scott, my MS specialist, he said there was no reason to believe that I wouldn’t even need a cane until I was in my 70’s. He said we were getting me on an aggressive treatment (that’s what I wanted) and soon, my progression would slow down and I’d start feeling a bit better again. Tysabri turned out not to be the miracle we both were waiting for, but I had some days in those lighted corners in the maze where I allowed myself to hope that I would feel better.

But then that relapse happened and I’ve never quite made it back to the before stage, even with what felt like a million rounds of high-dose steroids that made me fat and miserable, I am still not back to my pre-relapse levels of ability.

Buying Stanley felt like giving in. It felt like failure. But I did buy him and I do use him to the best of my ability and I almost don’t hate it as much as I thought I would. At least when I have the cane, people can clearly see that they should probably not try to mow me down without looking like a complete asshole. That’s kind of nice?

I haven’t seen TGS since I started using the cane and I’m almost embarrassed to tell him about Stanley. I’m afraid maybe he’ll be disappointed in me? I don’t know. It’s strange. For once the girl with all the words is without the right ones to describe how this feels. The closest I can get is that it feels shameful. On the outside I make jokes and use Stanley as an accessory for emphasizing important points in conversation (banging him on the ground is a definite thing I do occasionally…I cannot deny it). But on the inside I resent the shit out of Stanley. I feel like he’s the outside sign that I have failed. I’m stuck about ten feet into the maze and he’s not helping me get to the next lighted corner.

I have trouble walking more than about 20 feet. Fifty feet at most. My legs start to literally drag like inanimate objects and then I stumble over a foot every now and then. I can’t turn my head while walking without losing my bearings but I’ve come to rely on Stanley for that kind of thing. But he’s only semi-effective. Walking any distance at all is a chore. I am realizing lately that this simple fact has kept me from walking much at all. I’m stuck in a dark corner of the maze and I can’t see my way out because of one simple fact.

Am I disabled? Or am I semi-abled? Or am I able but only uncomfortably able and I’m not about that life full of awkward discomfort?

I feel like I’m not quite one thing and not quite the other. Would a walker help me? I’m not sure. That just seems like another awkward thing to carry around, get into and out of my car. Another device that doesn’t make my legs work any better at all but gives me something to lean on? Stanley does a pretty good job at that. I guess I could get a rollator that also allows you to sit when you get exhausted…but again. I’m just me. I’m carrying my backpack full of my water, my drugs, my computer. Collapsing and re-setting a rollator doesn’t really seem practical.

Should I get a wheel chair? A transport chair? A motorized scooter? But I CAN walk. I just can’t walk far. I don’t know how to deal with this reality so I try to build a life around that reality and only go places where limited walking is possible. This also means that my progress through life, my progress through the maze, has slowed dramatically.

I’ve got no desire to be social because I’m too tired from what little walking I have to do in any given day. I can never be sure how much walking will be involved in getting from point A to point B and back again in the outside world. I’ve got barely enough energy to get me to my office and back home again. Then when I’m home again I’ve got barely enough energy to take care of my home and myself – things like laundry, cat care, going to the bathroom and showering all involve many stairs and steps. I live alone in a two story house. It’s unavoidable.

People have suggested to me that I consider things like moving somewhere where I don’t have all of these steps. Selling my home and making a new one somewhere else without all of these challenges in my day-to-day life.

I’ve even thought about other drastic things like selling my house and moving in with my mom. Things that would mean I didn’t have to work so hard or try so hard every day to do a job that’s meant for someone fully able and not someone semi-abled such as I am.

All of these thoughts make me feel sick in my stomach instantly. This is how I know they are not the right thing for me.

I can’t give up yet. I still have to keep stumbling my way through the maze, trying to get to the next area in the maze where a little more light shines. The idea of getting to the middle – the place where all of the light shines and I finally understand this disease in a way that makes it bearable to me – that is what drives me.

I’ve lost so much of what I used to think made me, me. I am unwilling to give up even a little bit more. And yet living in this gray area of not entirely DISabled but only kind of, makes life pretty freaking complicated. Walking is kind of an important part of life. I guess I never thought about it much before. Of course I didn’t. Most people do this simple activity without even thinking!

I see The Great Scott on April 17, a week before my third Ocrevus infusion on April 23. I’m going to talk this all over with him. I’m going to tell him I think I’m getting worse and I’m not happy about it. I’m going to tell him that I’m not sure how patient I can be with a treatment that is given every six months and doesn’t seem to be making me any better. I’ve definitely gotten worse. See, I’m nowhere near 70 and I’m walking with a damn cane. So that’s a physical reality that even TGS can’t deny. I’m going to tell him all of this and hope I don’t burst into tears in front of the ever-present interns.

I know I’m supposed to look at the bright side and believe me, people, I do. I really really do so much of the time! When your legs can’t carry you much further than from one handicapped space to another, it becomes a little bit harder to keep doing that. When you technically CAN walk but you can’t walk very far, it’s like being half-pregnant. I’m not able. I’m not crippled. I’m somewhere in between that feels like no where.

I’m not writing this to worry anyone. I know these dips and dives are part of this MS life. I know this because some of you out there, who are so much more experienced than I am, have taught me this. You’ve reassured me of this and I believe you. Over and over and over again you have reassured me that I will get better at this. I have to believe that working this daily maze gets better or I would have a hard time rallying to do silly things like win business at work and make money for other people. I’m not ready to give up silly things like that yet. I’m just not.

I’ve met a few new people lately. Some who are at the very beginning of their journey – some who are a bit farther along than I am and have much more to deal with in life than a silly job, things like raising kids and having families. The only thing that makes any of this better is knowing that these women (mostly women) get it. It helps more than anything and I’m not completely sure why! So maybe I’ve decided to be completely honest about this shithole maze game I’m playing because maybe it will help someone else feel less crazy?

I’m writing this because usually when I name a fear, or ramble about something I dread, or let LOOSE on all of you like the whiniest, most annoyingly pessimistic friend you never wanted to have, it takes away a little bit of the power it has over me. When I talk about it, suddenly it seems smaller. Less scary. Almost silly.

I’m writing it down to dispel my own gigantic, huge, way too enormous fears. I write them down. They have less power. It’s like magic.

There’s gonna be an epic meeting on April 17 when I hit The Great Scott with all of this. It will make for a great blog post (meetings with TGS usually result in my favorite blog posts since I find him completely delightful). I will clearly and calmly recount how much this sucks and ask him if we can really still believe that this “miracle” drug is actually the right one for me after all.

And I will introduce him to Stanley.