It’s been a good long time since I’ve felt like my typically quasi-functional MS self. I think that’s been obvious by my unwillingness to write about it. I mean, when have I ever gone three full months without writing a single word? Never. Not since I could hold a pen and write words with it. Everytime I start to put words on a page, I get lost, then I quit and say, “Maybe tomorrow.” Then tomorrow comes (repeat).

These patterns play themselves out consistently every time I take a turn for the worse and I begin the internal battle over whether or not whatever bullshit thing is happening should be categorized as my new baseline or if it’s one of those freak MS spells where everything inexplicably seems to go to hell at the same time but as time goes by, sometimes a good long time, you find yourself coping with life again also completely inexplicably.

Being able to discern the one kind of bad MS time from the more permanent bad MS time would be the one MS-related superpower I would want, short of curing my badly damaged spinal cord.

I recently had to activate crisis mode. All-out crisis mode. Maybe my worst crisis mode since before baclofen pump surgery in February of 2019. Crisis mode is when I call in all of the available help in order to get myself through a regular day. This particular crisis mode is playing out in progressively more challenging phases.

Phase one started in February because it suddenly became much more difficut to use my lower body for much of anything. I’d get myself all set up to transfer from wheelchair to some other place (relaxing recliner, sleep recliner, the goddamn toilet) on my own. I’d struggle to get to  standing position and then…nothing. Feet planted to the floor I’d struggle to twist my body into a position where transferring would be possible but when your upper body is moving and your lower body does not, bad things happen. These bad things can include everything from just barely hitting the seat of your wheelchair after using the bathroom or having extreme difficulty remaining on your feet long enough to pull up your own pajama pants to tossing yourself diagonally from wheelchair into recliner and by some miracle of physics finding yourself in the chair (completely sideways and all cattywampus but in the chair).

Then there comes the time when you attempt to do the diagonal fling into the relaxing recliner but instead finding yourself crashing to the floor in front of the recliner, stiff as a board, using your life alert device (otherwise known as an Apple Watch) to call for emergency help from your amazing friend Alicia and one of her very strong older teen children to come get your incapacitated self back up after a nice little visit with the hardwood floor.

That’s when phase two of crisis mode was activated. That’s when Alicia basically moved in with me for a month so I’d never be alone and unsafe. Mind you, she has a family and an enormous amount of responsibility in too many ways to count but she set herself up so she could save me. Again. But this time for a little over a month. A MONTH. I’d get myself to stand somehow and Alicia would get on the floor and manually move my feet into various places until I could safely transfer to wherever it was I was going. I was trying to manage through crisis mode phase two while continuing to work full time. Because THAT was smart but denial is one of my most special talents and I was working it on full throttle. What? It’s PERFECTLY NORMAL to have a friend moving your feet with her hands in between work meetings while her whole family covered for her at her home. TOTALLY NORMAL.

Well, you might be able to guess what happened next.

I had to be persuaded to re-enter Inpatient Rehab for a short stay (I told myself) to figure stuff out. There is only so long that Alicia can drop out of her life to swoop in and save me. I told myself I’d take a couple of weeks of vacation (no official disability time off for this girl thankyouverymuch), get back to transferring like a good Crip, BOOM done back to life, easy-peasy.

Or not. Two-weeks at inpatient rehab turned into 30 days. On day one in IPR I was suddenly not able to stand up at all. Inexplicably. And terrifying.

I should also note that I was at “The Valley” where Franzi has his new traumatic brain injury unit and where Franzi goes, I go because he manages my baclofen pump. We needed the full perspective to figure out this puzzle – Franz, PT and OT and that could only be found at The Valley. I knew a couple of people at The Valley but it wasn’t my comfort zone of West Penn Hospital IPR where I know everyone and everyone knows me.

The Valley is over 115 years old and looked every bit of it. It was kind of a depressing place, to be perfectly honest, but of course an amazing staff helped make up for that a bit. I don’t want to get too much into the details of my 30 days in IPR mostly because it traumatized me even more than I expected. I’m still working through it with Dr. KB. It’s hard work and I’m not enjoying it. She was an angel and attempted to help my entire medical team understand more about why this visit seemed to be making me extra-uber anxious based on the reality of my recently-discovered hospital-related PTSD. She conferenced with the IPR team, including Franzi, to help them rework how they worked with me. This was only moderately successful because, well, even Dr. KB can’t completely fix the fucked up health care system we have in the United States but damn she tried and for that I will be forever grateful.

Needless to say this entire adventure led to another lovely experience with taking Short Term Disability leave from my job. This sucked even more than usual because of the timing: I’d been promoted to the position of Chief Growth Officer earlier in the year for a brand new agency I worked very hard to help create with a large team of very smart people.

We had to keep our big news quiet for most of the first half of this year as we worked out the details (new name, new reason to be, new brand design – the whole ad agency chebang). We were officially announcing our new agency, called Formerly Known As, April 18th. I went into IPR on March 30. I felt so dejected. I’d made this enormous achievement, something I’ve worked my entire career to achieve. I am finally a C-Suite executive. I am a female, chronically ill, disabled C-suite executive for a global communications holding company. That felt like something I’d like to celebrate and shout from the rooftops but I was probably hyperventilating in a hospital room when this whole announcement went down. (Check us out if you care to at Formerly Known As).

I’d planned to be back to work by now but of course that had to change too because even though I left IPR so much stronger than when I went in, I didn’t leave with the ability to bear weight and thus transfer independently from chair-to-chair-to-toilet-to-chair etc etc. This has thrust some fundamental rather unpleasant realities upon me. I’m just going to list them here for you since I lack the heart to try and explain in sensible, let alone prolific, words how all of this makes me feel.So here we go!

• I now require 24/7 home caregiving. I had to create this team of people in 24 hours or risk not being released from the hospital. Friends who just happen to be social workers or certified caregivers jumped through flaming hoops to help me make this happen and I am still in awe of their willingness to jump in and do the thing. ALL of the things, in fact. I am also in awe of the fact that I’ve only been out of the hospital about two weeks and my care team has cost me nearly $6k. Yes. You read that right.
• I require the use of something called the Best Stand sit-to-stand lift that someone needs to load me on and off of every time I need to transfer (yes even to use the toilet). We didn’t realize that I’d require this device as urgently as I did because we all kind of thought that once I got home into less stressful and more familiar surroundings I’d be able to stand again after doing all the strengthening work I’d done for three hours a day for 30 days but surprise! I got home around 7PM and learned the hard way that I still couldn’t stand. This was on a Thursday night. My transfers that night required my nephew to physically lift me from place to place. I found out early the next morning that insurance denied approval for my transfer lift so I had to pay out of pocket on the spot to get the thing delivered to my house later that morning because…well for obvious reasons. Somehow, a miracle occurred and the medical equipment company had the lift to me at my home two hours later. Well, I’m sure $3k in cash helped?
• Almost every routine I have established in my new home to support my daily care and feeding is no longer possible. For example, brushing my teeth before bed isn’t really possible right now. I mean, technically it is because one of my many caregivers brings me my toothbrush and two water glasses and a towel to my sleep recliner and I do it that way. I can do very little independently at night because the lift takes me from toilet to chair and back again. Stops in between aren’t really easily accomplished while I’m hanging from my armpits on the transfer lift.
• I haven’t been able to work since March 30 when I entered IPR and officially went on short-term disability. This haunts me even knowing I work for an amazingly progressive and supportive company even I have to acknowledge that my timing for this sudden disappearance 100% sucked.
• I can’t write. I can’t read. I can’t settle myself down. I don’t know this person. I know I wish I could help her in some way but she seems to keep going from bad to badder to so bad it’s really bigger than that word can communicate.

I know my MS is unique. I know it is described in my medical records as atypical, progressive, aggressive, treatment refractory, non-inflammation driven muliple sclerosis. But all of those words haven’t prepared me for this kind of one minute things seem horrble but in a manageable way but then the next minute requires full-time care. This disease is moving so fast I don’t know what will be left of me in the next month, the next year – hell! Even the next day and minute.

I don’t know how to do this and yet I guess I can’t deny that I am doing it (with an entire team of supporters). Will I eventually be able to stand, pivot and transfer? My whole PT/OT/medical team refuses to allow me to think otherwise, but at the same time I’m wondering how much it will cost me to hire live-in help to transfer me via lift in between meetings during a 9 hour work day. Because work isn’t optional. I think the numbers I’m adding up on various scary spread sheets support the obvious reality that being chronically ill and disabled and generally a medical mystery costs a whole lot of money.

In short, I am a wreck of a human held together by gossamer strings that are often impossible to see. I wish I could say you will hear from me more often but I’m still eyeballs deep in phase three of crisis mode where every day is a see-saw of hope and utter despair.

I don’t understand any of this. Maybe that’s why writing about it feels so very impossible most of the time.

For anyone who wants more frequent, short, vapid updates I’ve been managing to do the social media thing every now and then? Find me on the ‘Gram (@bethybright) or on my Facebook page.

I do have so many good stories about miracle humans coming into my life inexplicably at just the right time that I am bursting to tell. I do have a break from my paid care team because Alicia is here with me for a couple of weeks because she knows intuitively that she is often my only comfort and two weeks after my release from the hospital I am in desperate need of any comfort available.

I feel incredibly lucky. I feel incredibly borderline cursed. I feel grateful. I feel pissed off. I am so angry most of the time I just scream and yell (internally). Then there are days when I laugh so hard it hurts but in a good way. I guess we’ll see where this ends up? It’s not over yet. I guess that’s a good thing?