I’ve been putting off writing this post for a while now. And now that I’m finally writing it, and on my phone of all things, I’m not sure how eloquent this writing will turn out because my mind is a jumble of mixed emotions.

Tonight might be my last night in my home.

The home that protected me and kept me safe for 21 years through one of the most dramatic changes I’ve gone through in my life – the transformation from troubled married woman to widowed single woman on the cusp of a scary new life.

Tonight, I kept looking around the rooms as I wheeled from spot to spot trying to say goodbye to my former place of security and comfort. I’m remembering the parties and the friends and the booty calls and the pets and the enormous amount of change I endured while living here. I’m remembering feeling alone and scared but also new and excited and on the cusp of something I could have never imagined. I’m remembering feeling safe while completely alone for the first time in my life.

I’m wondering how it all went away in these last few years of constant decline in my health where I’ve transformed once again but this time into something I’d not remotely welcomed and have fought every step of the way.

This illness. This chronic illness has taken so much from me and now it’s taking this. My heart. My home. The place where I was reborn. And before I can start again in a another new place that I hope begins a new chapter in another phase of life I could never have seen coming, I’m spending this last night in my home tonight because tomorrow I’m being re-admitted into the hospital for yet another round of trying to fix what is broken within Bethybright (who’s been much darker than she could have imagined she could get in the last several weeks and months).

My baclofen pump seems to be on the fritz. No matter how many times we’ve adjusted it these past couple of months since my last five-week stay at inpatient rehab, it never seems to work. Over these weeks I’ve felt my body seemingly slowly turning to stone creeping up from my toes to my chest. Sleep has been nightmarish. My beloved bed turned into a trap that is hard to get into and even harder to get out of again. I haven’t left the house for anything but the ever-present doctor appointments in months. I’ve missed summer. And now I’m missing fall. I’m looking at winter and wondering when life will start feeling like actually living again.

I don’t know how long I’ll be in the joint for this next round of trying to fix Bethybright. It could be another long stay because first we need to figure out what the hell went wrong and then we need to decide on a plan to fix me again. And then, after all of that, we’ll need to get me back to outside world form again before they set me loose on the world to try (again) to build a new life.

I’ve been in the hospital for nine and a half weeks this year. I know how hospital time works. Nothing happens fast. Even though Dr. Franz insists it won’t be another month-long stay I know all too well how he has no business making such promises. For I am medically complex. A jumble of mixed symptoms that seem to be on a collision course with total disability in what feels like record time. Even The Great Scott, my MS specialist, seemed to be flummoxed at my last video visit this past week.

“I can’t explain this, Maribeth, we seem to keep swinging and missing but even if you go through these phases of worsening disease progression that seem unexplained you always come at it with such a great attitude. I know if you get to the point of needing lifts to get in and out of your bed or where you need live-in help, you’ll be ok. You seem to roll with these punches so well.”

Wait. What? This is “rolling so well?!” This is a fucking disaster wrapped up in a mysterious web of misery, TGS. This is not rolling so well. And please refrain from predicting further doom in my future with your casual mentions of fancy bed lifts and roommates I never asked for like it’s no thang. I am not here for this kind of realness coming from the great wizard of multiple sclerosis. That was just not cool. Not especially on the cusp of yet another visit to inpatient rehab for an undetermined amount of time.

When it’s over, I’ll be delivered to my new house which is not yet a home because I’ve yet to actually walk through its doors in real life. I’ve had many video visits though. I’m going to be delivered there like a fancy FedEx package that doesn’t require a signature but maybe should. I’ll see it for the first time on my first day out of the hospital. How crazy is this life? Who thought any of this was even remotely ok?

Here’s the thing. I’ll be ok. TGS might be annoying but he’s right as usual. I keep rolling with these relentless punches because what fucking choice do I have? I’m making this drastic move into a more accessible living situation and I’m most fortunate to have the means to make it happen. At least for now. It will have to be ok because it’s already done! I’m heading to the suburbs no matter how much I vowed to never let that happen to me. I’m going to have a sweet-ass accessible bathroom that will not be nearly as deadly as the bathroom I have now. I may go bankrupt paying for all of this but hell. What else do I have to spend money on now that fancy shoes and designer handbags seem to be a thing of the past for me. Might as well spend it while I have it! Because who knows how long that will last in these post-COVID advertising business days where nothing is certain but change you could never have seen coming.

Inpatient. Impatiently inpatient. Before I will walk through the doors of my next new phase of a life I never saw coming, I need to get used to being an inpatient again. Back to the ward where I’m now officially a frequent flyer. I wonder if they’ll rename the unit after me some day? Three visits in one year seems like it should merit some kind of fabulous prize. It’s the least they could do.

My last night in my old home that has started to feel like a prison to me feels conflicted. I will miss it. I won’t miss it at all. I have a few guest rooms in the new house I’ve never seen in real life so maybe my dream of creating an accessible compound for fabulous single disabled people with chronic illness will finally come true. You’re invited! Come visit. Take a leisurely shower in my fancy new accessible bathroom. Wheel out on to my deck. Maybe I’ll start drinking again. It could be fun?

So wish me luck, friends, because I’m a little overwhelmed with the prospect of this next medical adventure. It begins tomorrow. Let’s send wishes out to the Universe that this stay isn’t very long and ends with me coming out better than when I went in this time.

It could happen.