There was a time in a long ago past when fashion and specifically celebrity fashion was kind of an obsession of mine.

During this time of my life I stumbled across a little blog called Go Fug Yourself. I was one of their OG followers to the point where I would occasionally correspond with the writers Heather and Jessica through the comments section. The number of times I’d visit their blog during the work day was shameless – with every page refresh was new hilarity about some notably interesting celebrity wardrobe choices. This blog kept me going during some of my less pleasant phases of my career in advertising. If the site went down, and it occasionally did, I’d frantically email the Fug Girls begging them to fix it, for love of Joan Collins! (The Fug Girls revered Joan Collins as all sane people should.) Their posts written in JLo’s voice were some pro-level satire. I loved the Fug girls and their little blog. Click on those links…Trust me you won’t regret it.

At times when the celebrity clothing choices defied logic or even description, Jessica or Heather would post a pic of say, Bai Ling for example wearing something ridiculous even for Bai Ling, and the text in the description would just say “wordswordswordswordswordswords” over and over again as if the image defied actual language to describe it. That’s kind of how I’m feeling right now.

Words. Nonsense words. Inane words. Just words. They’re swimming around my brain just out of my reach, just outside the realm of sensible language. I try to reach for the words to string them together in some semblance of a description of what life feels like right now but they slip out of my grasp, through my numb fingers, like vapor.

I remember the days when I used to write just for me. Just for my own sanity.

I had a particular hard-cover spiral bound journal I preferred that I would buy during trips to Barnes & Noble where I went frequently to browse and buy books. I’d write in these journals daily in my favorite gel pen, enjoying the tactical sensation of putting words on the lined paper almost as much as I enjoyed the overwhelming relief of purging my brain of all of its baggage.

I remember driving to Mellon Park, a lovely outdoor space along Fifth Avenue in Pittsburgh very near to the Center for the Arts. There was a hedged in terrace with a concrete slab where a fancy statue used to sit. I’d plant myself there like I was a statue (Young Widow Reflecting perhaps) with my pen and my spiral bound journal and pour out my heart before driving up the road a bit to Starbucks and then heading back home to revel in my now empty brain in utter peace with my Frappuccino.

I still have these journals. They’re on a shelf in my new house where I’m going to alert a trusted friend to find them and destroy them upon my death before anyone in my family could get their hands on my deepest, most unfiltered thoughts, feelings and escapades. I pull them out and read them every now and then. I can remember vividly where I was both physically and mentally when I wrote a particular entry.

There are so many lessons in those books, revisiting them has done me almost as much good as my nearly 20 years of therapy. I don’t write with a pen on paper anymore and I miss it so! I started using a journaling app about ten years ago and I kept at it fairly regularly but it was never quite the same.

Then I got diagnosed with MS in December of 2015 and my writing took a decidedly specific turn and eventually became this public blog.

I do this for me, this blog writing, make no mistake about it. I get satisfaction when a reader tells me something I wrote makes them feel seen or less alone – that was a happy coincidence and one that made this hot mess of a life make a little more sense in some crazy way but that’s not why I write it. I’m not that selfless, as it turns out.

I get more out of what you share with me than you could possibly get from what I share with you and it has so many times been the thing that kept me going. I feel these relationships I’ve formed through this blog are as real and important as any I have in my “real” life. I chastise myself when I lack the energy to reply to every comment on a Facebook or Instagram post because I think that’s the least I can do for what you all do for me but sometimes I am completely out of juice by the time I hit post and there’s nothing much left. That makes me feel like a blogger failure then I remember how I used to write words just for me and now those words are a public thing and maybe I need to start keeping some for myself again so I can experience the purge without the guilt.

But I know it won’t work the same way as it did back then, the journaling thing, because I used to be able to write my way out of most things (to steal a line from Lin Manuel and Hamilton). I could write my way out of even the most tragic experiences or the most intense heart ache or the most cringe worthy bad romantic decision. I realize I don’t know how to write my way out of these things I feel as a result of my MS, or my age or where I find myself in this strange life. I share the things I write here hoping that someone, someplace will be able to see through my words and help me feel OK again.

But words words words words words words words. That’s what it feels like when I sit down to write these days.

I feel hope and despair all at the same time. I look around at my beautiful new house and wonder when it will start feeling like my home. I wonder when I won’t wake up in the morning with tears in my eyes just thinking about another day, another day trying to get through without damaging myself physically. Another day trying to convince myself I can be happy in this different kind of life.

I tell myself wise things such as, “Give it time, Bethy. You have had so very much change in so very little time, give it time. Time heals. You know this. There are books and books full of ink, words written in ink in your own hand, that prove this to be true beyond the shadow of a doubt. Give yourself time. Just cry it out. You’ll feel better.”

I don’t feel better though. I just feel angry. And empty. And full of badness and uncertainty. Then guilty. Then a glimmer of hope. Then angry again.

I talked about it with my new therapist. I don’t know if she’s the one yet. I just know she’s what I have right now and I’ve put off talking to her again for long enough.

“Are you tearful frequently?

“I am. I hate it.”

“How’s your appetite?”

“Eh. Nothing really appeals to me. I’m tired of food. I’m tired of eating. I’m sometimes too tired to force myself to make myself something to eat.”

“What are you doing just for you? To give yourself some joy?”

“Um. Nothing really. I used to read. Haven’t read a book in months. I used to take a drive. Sing in the car with the top down. I write. But I don’t have as much time for that anymore and I don’t seem to enjoy it very much anymore. Work keeps my brain busy.”

“How are your weekends?”

“Fucking torture. There’s so much time! I can’t figure out what to do in between going from my recliner where I sleep and watch TV and my wheelchair where I do everything else. I’m tired of sitting all of the time. It confounds me. All of this sitting.”

And it goes on like that until she finally says, “I think you’re experiencing grief. That’s clear. I also think you’re experiencing a major depressive episode. That sounds scary but it’s just how we describe these feelings in psychological terms. I think stress is wearing you down and having a bad physical effect on your illness and your symptoms. These are all things we will work on. I’m not afraid of them. How do you feel about these ideas?”

“I feel annoyed, Dr. K. I feel like those are the most obvious things a medical professional has ever said to me. But I also feel relieved because I’ve been avoiding naming this period of my life because it overwhelms me trying to name it without allowing it to swallow me whole. Yeh. I guess we’re on the same page.”

And so it goes. She’s no Cheryl. But she’s what I have right now and I’m grateful she’s not afraid of my messy existence. I guess that’s as good a place to start as any other place?

I try to remember my first session with Cheryl and I can’t. Not even vaguely. Cheryl was just always there, or so it seems in my memory but I know that’s not true. We had a first session. We had to go through this phase together. It was bad back then, sure, but it wasn’t like this. This feels wrong. This feels like things I shouldn’t be feeling.

My former roommate, Maddi, liked to talk about how bad my generation is at accepting and dealing with their feelings. Feelings, apparently, are the millenial’s jam. Millenials embrace their feelings and deal with them without judging them or trying to avoid them. She has parents who are my age and we share this challenging relationship with feelings (or so she said). Feelings are just feelings. They’re not inherently good or bad. They just are. Let them be and let them breathe. But I can’t drive myself to Mellon Park anymore and I cannot position myself on the statue pedestal in the hedge bordered terrace with a pen and a paper journal.

I have to be here. In this place. With music that reminds me of driving so much that I don’t want to listen to it anymore because I remember that feeling of freedom. I remember driving my favorite backroads knowing I had to make it back home before I had to pee and knowing it would be iffy getting myself from the car back into the very inaccessible home I used to live in but it didn’t matter. Because I drove and I sang songs and I looked at the nature with the top down. I’d have to go back to that place and struggle to get back inside the house but for those 60 minutes or so I was me again.

I’m so fortunate to have this place to be. I’m so fortunate that I can pee without fearing being stuck on the toilet. I’m so fortunate to have this fancy expensive chair to relax in – and even to sleep in because I didn’t have that before. I had no peace. I had what used to bring me peace but what brought me grief and emptiness instead. How am I in a new place with the majority of my safety needs met and yet that same grief and emptiness finds me here anyway?

Dr. Karianne has her work cut out for her.

. . .

When I started writing today I thought my subject was going to be how strange (but also wonderful) it is to be living alone again.

I had an image in my mind that I’d use as the featured visual so I went to Adobe stock images and typed in “woman alone in a wheelchair.” I guess I had something in mind, something not sad or pathetic but simple and peaceful. Maybe a living room and a table with a candle or maybe light coming in through an open window.

The images delivered to me at this rather innocent search were like a metaphor for everything I’m struggling with right now. There were mostly elderly women, first of all, all looking sad and pensive in medical looking surroundings. There was more than one image of a wheelchair toppled over on its side with a sad, pained old woman sprawled on the grass or carpet in front of the empty chair.

Ok then. Search revised “happy young woman in a wheelchair alone.” Easy peasy.

Images began to appear.

There were a few photos of young women in wheelchairs sitting in the surf on gorgeous beaches. In the surf. In a wheelchair. A regular wheelchair – not a beach wheelchair – leaving me to wonder how the hell they got her there in the first place and what sort of aircraft would be required to wheel her out of the surf again once she sunk halfway wheels deep in the sand.

As I continued to scroll, there was another young woman wheeling with a grocery basket on her lap immediately prompting me to remember how pretty much everything I try to balance on my lap whilst wheeling tends to slide off and careen to the floor no matter how careful I try to be. Maybe it just takes more practice or skill than I’ve developed yet?

Then there were the women sitting in fields – various fields like one of wheat blowing in the wind another atop grassy rolling hills. None of these women had obviously strong upper bodies. They looked average. Thinner than average in fact m. Not athletic at all. How the hell did they get to these fields, I wondered? Did someone push them there and then quickly run out of frame? Is there a way to have freakishly strong arms and shoulders that just look pick thin?

The one woman in a photo gazing out a window while sipping a cup of steaming tea (I imagined anyway) didn’t appear to have a lid on her tea cup. She didn’t appear to have a teapot next to her and a supply of cups handy so she could wheel herself to just the right spot for window gazing and solitary tea drinking. Once again I was forced to wonder…how the hell did she get that uncovered tea cup to that spot without scalding herself or sitting amidst a pile of broken tea mug pieces?

Who is taking these photos? Have they ever actually talked to a single woman who lives alone who happens to use a wheelchair? Because I’m here to tell you that any of these peaceful, happy scenarios is damn near impossible to pull off when one actually lives and spends much of their time alone.

The gear involved! The messes that ensue when you try to do the easiest of things. The giant gashes in your new home’s baseboards and walls formerly painted a lovely clean Benjamin Moore Simply White. The reality that the divot at the end of your driveway where driveway meets the street, that stands between you and the mailbox, is so oddly steep that you wonder if you’d ever actually be able to propel yourself back up that driveway after retrieving your mail. I mean, for someone on two legs it’s barely a bump. I’m new at this whole wheelchair thing, I realize, but the world is full of divots and bumps that are 100% ignorable when you navigate the world on your own two legs. They are anything but that when you’re wheeling yourself through the world alone.

My head hurts from the utter banal reality of how easily things work in the regular world that are all of the sudden enormous obstacles. My sister suggested that I could learn to take out my own trash if I just put the trash on my lap. And then what? How do the cans get to the curb? How do I open the door with the trash on my lap? What if it leaks? Even if by some miracle of the universe I do figure out how to balance the trash bag on my lap and also manage to push my full trash cans to the curb on trash day (it’s conceivable, I am stubborn and crafty) how do I get the cans back into the garage once the trash men have tossed them empty on the lawn? How do I reach the keypad that opens the garage that’s at standing height? Why didn’t I think of every one of these ridiculous tasks before I decided I could live happily alone? How do I stop thinking about them all now?

I honestly don’t know.

A major depressive episode, she said. “Does that sound accurate to you? Do you understand what I mean by that, Beth?”

Yes Dr. Karrianne. Yes I indeed do. Will you teach me how to not allow the millions of details that go into every tiny mundane task of every day to swallow me whole and make me wake up in tears before I’m even fully conscious in the morning? I’d really like to learn that.

And afterwards, maybe I’ll wheel myself out to the surf and enjoy an epic sunset.

Everything will be ok. Because it has to be.

Words words words words.