Most of you know that May is the month of my very many doctor appointments. In fact, I pretty much have a visit with some doctor every single week in May as I turn up the gas under my efforts toward finding a new way to live what’s left of my life.

That’s really what this is about, folks, let’s just be honest. I’m transitioning from Bethy Bright’s MS Phase 1 where we beat our head against many brick walls in a desperate attempt to find that elusive state some refer to as remission but I’ve always more realistically thought of my quest being toward some kind of stability. No major progression, no major symptom flare, no earth-shattering freak-out level MS activity – just regular run of the mill MS. (I know…I can hear you all laughing even through the internet).

I went to the Wizard and asked him to give me the best he had.

The Great Scott didn’t fool around. He went aggressive and I was all about it. Tysabri might give me a deadly brain virus? P’shaw! If it can help me stabilize I would take that risk. And I did. But my MS laughed in the face of Tysabri and asked me if that was the all we had and sniggered while she said it. Ocrevus was a brand-new miracle drug that was changing people’s lives and improving outcomes for MS patients all over and I was one of the first to get the new goo. How lucky was I? I was lucky enough to enjoy relapse after relapse. A lovely sprint from cane to trekking poles to one rollator occasionally to two rollators always. Then came a week-long hospital stay tossed in there for good measure that all but made me lose my mind. So, Ocrevus was also NOT for me either.

There was only one therapy left and I knew I wouldn’t be able to rest until I tried the big guns, so, last November 5-9 I got Round One of Lemtrada and obliterated my immune system in the hopes of growing back a new one that might be slightly better behaved. I hit the six-month post Round 1 milestone this month and things took a pretty big dive (again) and I found myself sequestered on the second floor of my house, cursing my spasmy legs and wondering if I would ever see the world beyond my front door ever again.

I am finally starting to see some teeny tiny improvements. Finally. The major milestones I’ve accomplished in the last two days include doing my stairs three times per day, coming down to the kitchen to feed myself – just these last two days I’ve even managed to get myself down to my basement to scoop the litter boxes. Look at me! So much winning going on up in here it’s a bit dizzying. I’m also getting better at articulating sarcasm in my writing, no?

I was filling my Precious in on my latest downturn, that would be Cheryl my therapist, during my session yesterday. She had been off river cruising in the south of France, of all the nerve, and missed all of the excitement. To say she was a bit flummoxed by all of my news would be an understatement. “Dr. Scott said THAT?!?” She said this more than one time. We may have gone a little long on our session because I had so much drama to share. Once I outlined all of my various medical next steps she did that thing she does that tickles me to no end. It usually happens after she’s missed a session. Once I take a break from my latest litany of misery she says, “Wow. That’s an awful lot.” And we laugh and laugh. I sincerely think she keeps me around for pure entertainment value.

“And what are your expectations from all of these upcoming big doctor dates?” she asked me.

“Oh, you know me,” I replied. “My expectations are so low it’s almost hard to muster the energy to drag my raggedy crippled ass to Cleveland just to have more doctors tell me I’m some kind of chronic illness having unicorn, but not in a good way. And even the local docs? I’m less enthused about them. Maybe Botox in my legs will make my legs look younger but I’m not all that hopeful that it’s going to put an end to my nightly leg spasms that are worse than my worst nightmares. Then there’s this Dr. Swan person…I mean, what even IS a physiatrist? My friend Jo said they’re magical humans but my particular person didn’t get great reviews online and I’m sure she’s just going to tell me to walk more or try yoga and I’m fully prepared to punch her in the face. I guess you could say my expectations are fairly low.”

Once she stopped laughing at my dramatic deluge she said, “But the funny thing is, I can hear something in your voice that sounds like hope. I mean, it’s hard to hear it but I definitely hear it beneath your unique turn of pessimistic phrase. What’s that about?”

It was then my turn to laugh.

I tried to explain it to her the best I could and it wasn’t easy because she’s right (as usual) but I’m not sure I completely understand it. I’m a dedicated realist. I just am. I can’t look at this hot mess that’s been the last three years of my life and muster up anything other than absolute disgust.

My life has changed so much and not in very many good ways at all. I built an amazing career and watched the biggest opportunity of my life go to a woman in NYC who has two working legs. In any other scenario I would have fought for my right to lead the thing I helped make happen over the last fifteen years of my life but I can barely stand up let alone kick any NYC ad executive ass. I hardly look like myself let alone feel like myself. Lately I barely leave the house due to my even less functional limbs and I am currently without a single option for making any of this any better. This is the stuff that falls into the category of pithy sayings like “shit happens” and “life isn’t fair.” I hate those sayings and I’m not making any goddamn lemonade. I spend most of my life feeling outright angry at the way my life has gone since diagnosis. I think ugly thoughts. I have mountains of resentment. This was not supposed to happen this way. I was not supposed to be on the verge of losing my job, losing my home and living with my mother at 52 years old. I worked way too hard for any of this to be happening.

And while all of that bile is spewing, I cannot deny that I’m attacking what I am calling Bethy Bright’s MS Phase 2 like the most difficult client I’ve ever had. I am doing what I used to do for pet food brands but I’m doing it for me this time. I’m researching the shit out of everything. I’m making notes and staying up at night trying to organize my plan of action for all of these appointments. Hell, I may be the first patient to ever bring her own slickly designed PowerPoint deck to a first meeting with the brainiacs at The Cleveland Clinic. I’m going in with my “run the room” Beth face on. That one that makes me great at my job.

If pure tenacity and refusal to quit can be called hope, then maybe I am hopeful in spite of it all.

It’s almost as if my superlative old Beth brain is in there, way down deep inside, and even if it’s hard to feel it over all of the pain and anger and just plain bitterness that has taken up residence there in the last three years since my diagnosis but it’s there. Old me refused to give up when her office was downsized to 20 people in 2007 and there was just as much work to do as there was when we had 200. Old me refused to believe she couldn’t launch one of the most successful pet food brands in recent history when her company’s corporate culture was in constant disarray and day-to-day life was constantly changing. Old Beth trusted herself enough to take things that looked impossible and make better things totally possible. She’s still in there somewhere. I almost wish she wasn’t! But she just is.

Which brings me to the swans.

How’s that for a transition? I should have known when my wise friend Jo told me that a physiatrist could be the missing piece of my medical puzzle that she would be right because, right Joda is. Always. The force is strong with that one. I met Dr. Barbara Swan late this afternoon and it was the single best medical appointment I’ve had in my entire life of very many, many medical appointments. I may be a little in love with Dr. Swan, hence my heart shaped black swans above. You knew they would be black swans, didn’t you? I mean, I’m still me.

Dr. Swan explained what a physiatrist does by saying, “Dr. Scott is the man to tell you how to treat your MS. He’s the man. I am not. I am the person who can teach you how to live with MS. You could say that my goal is two-fold. First to make you stronger where that is possible. And second, where that’s not possible, I will work with you on strategies for coping. Figuring out how to live, if that makes sense?”

Um. Yes, Dr. Swan that makes sense and would it be inappropriate for me to hug you right now? I really wanted to hug her.

We outlined strategies. We decided that job one is for me to get my spasticity under control so I can actually get some good sleep and hopefully start to feel stronger. Until that happens, nothing else can. I’m too weak to begin strengthening yet. But I will get there. We added a second medication to see if it can help my leg spasms (Tizanidine which can complement Baclofen which has been less than effective for me). We talked about how the balance will be managed between baclofen and tizanidine. We talked about dosing and strategies for getting me through a night.

We talked about eventual PT. She listened as I asked her advice on the motorized wheel chair I am considering. She understood my fear that if I “give up trying to walk” I might never be able to walk again. She talked me through it. We came up with strategies. We made plans. I felt like I was in a high-level client meeting concocting an insightful solution to some hideously complicated marketing problem but I was the complicated problem we were trying to solve. She was a good partner to bounce ideas off. I walked into the appointment annoyed because she was nearly an hour late seeing me. I hugged her when I walked out of her office nearly an hour and a half later. READ THAT AGAIN. I said we talked for over 90 minutes. The cleaning people were in the office when I left because I was her last patient of the day. I almost can’t believe it actually happened.

Before it was all over she explained to me that she would be my partner for developing a range of coping strategies to get me through all of the many ups and downs and really low downs that come with having MS. She said this range of coping strategies would be constantly evolving because that’s just how a disease like MS is. She gave me information about the OVR – the Office of Vocational Rehabilitation that might be a source of funding for my very expensive motorized wheelchair. She is reviewing the specifications of the particular chair I am considering so I can have an educated perspective before I drop yet more thousands of dollars on yet another mobility device. She gave me a list of driving schools that can teach me how to use hand controls in my car for the days when using my legs makes driving unsafe.

“Our work together will be about doing everything we can to enable you to get back to actually living your life as opposed to just managing a really difficult disease. That can be about physical therapy, medication management, developing new skills and way of doing the things you love. Coming up with ways to keep you independently living your life where you want and how you want. So, I want to see you again in 4 weeks. Stacy will schedule you. It was my great pleasure to meet you today, Maribeth.”

I mean…I might actually be in love.

My sister was a trooper to not only get me to this appointment (I still need to be wheeled anything further than a couple of feet because I get depleted really quickly) but she was patient enough to sit in the waiting room for over two hours and push my ass around in a wheelchair while I held Clara my fancy Danish rollator on my lap. She even stopped to grab my new script on the way home so I could potentially get my first decent night of sleep in months.

I won’t get into the obvious issue, the giant elephant in the room, that being why TGS never thought to hook me up with Dr. Swan long before this. I mean, she (or someone like her) should be introduced as an option for every MS patient who is drowning in despair, confusion and frustration. The failings of our health care system are too many to count. I could have avoided some fear, sadness and uncertainty had she been in my stable of health care providers a lot sooner than this.

I’m also not going all crazy after one appointment like my troubles are over and everything is sunshine and roses but I have to tell you, it was a really good day. Now I have to be off to design my PowerPoint deck for my meeting next Tuesday at the Cleveland Clinic. A great pitch deck takes time.