In my mind, it was the Buddha or some entity much more spiritual and lofty who told me, and you and everyone else, to be like the water. But it wasn’t the Buddha or Ganesh or any such being, it was in fact Bruce Lee in a 1971 interview, speaking about his Kung Fu practice. Specifically, he said:

“…to ‘empty your mind’, and explained that a person should be “formless” like water. Lee said that because water has no shape, it becomes whatever it is poured into, whether it be a cup, a bottle, or a teapot. Lee went on to say, ‘water can flow or it can crash. Be water, my friend’.”

Here’s a bit more from that article that really spoke to me:

“It’s important to note that many of Lee’s beliefs and ideas came from the time he spent with his martial arts master, Yip Man (the subject of the four Ip Man films starring Donnie Yen). Yip Man was a grandmaster of Wing Chun, a fighting style based on reflexive movements. The principles of Yip Man and Wing Chun had a lot to do with how Bruce Lee’s philosophy developed. After training under Yip Man, Bruce Lee had a realization when he would practice punching the water. According to Lee, it occurred to him that water was the “very essence of gung fu”. He discovered that no matter how hard he struck the water, he couldn’t hurt it. Though it seemed weak, it could “penetrate the hardest substance in the world”. It’s formlessness and adaptability led to Lee deciding that he wanted to become like the “nature of water”. The beginnings of this idea of Lee’s was actually depicted in Ip Man 3 when the titular character splashed water on Lee (Danny Chan). Lee believed that a person could achieve this goal of becoming like water through the “art of detachment”, which involved emptying your mind and relaxing.”

I’m much better at being so many other things tho…I am great at being the cage. You know the one? The one you tell yourself you’re trapped in. I’m also excellent at being the bitch that tells you how your outfit is horrific and remember that time when you used to be attractive? If water has a shape, the bitch is reminding me that it used to be a much less squishy, Jabba the Hutt looking shape. But wait! I’m also really, really good at being Nostradamus – she who sees doom in every strange pain and disaster in front of every footpath and gloom among the rays of sunshine. Nostradamus might be what I’m best at currently.

Or you could say that I’m much better at being the broken cup, the empty bottle or the cracked teapot, if you’re into the whole Bruce Lee thing. Either way, you might say that being like the water is a challenge for me right now.

When I became a widow at 30, I went on a spiritual reading tear. I was desperately looking for meaning in tragedy. I needed to understand the incomprehensible. Watching a formerly healthy as a horse, young vibrant man die within a span of five days without ever regaining consciousness sent me searching for wisdom in books. Old Path White Clouds was a big one for me. From Goodreads:

“Drawn from original sources, Old Path White Clouds is the beautiful classic recounting of the life and teachings of Gautama Buddha over the course of eighty years. It is retold alternately through the eyes of Svasti, the buffalo boy who provided kusa grass for the Buddha’s enlightenment cushion, and the Buddha himself.”

I’ve given this book to so many, many people at times in life when said people might have been lost and alone. It still sits on my recently drastically reduced bookshelves begging my distracted mind to pick it up and remind myself of how I once learned how to be the water but also mocking me for thinking for even a second that I could do that trick again.

And yet that is my challenge right now and there’s no way around it because the American health insurance racquet is forcing its will upon me by letting me know that I’m running out of home health care visits so I need to put the breaks on my current PT schedule.

I have great insurance through my company for which I am incredibly grateful. Mostly.

When it comes to home health, however, I am limited to 100 visits in a calendar year. Since coming out of my last month-long stint at inpatient rehab, I’ve used 74 visits. Yikes. So then our option is to transition to something called outpatient physical and occupational therapy at-home (sounds the same, but it’s classified differently insurance-wise) but my insurance only covers 30 outpatient sessions of PT or OT (or both) in a calendar year.

Thirty. In a year.

If you have progessive MS or some other chronic illness that leaves you with exhausted medical intervention possibilities, physio (as they call it abroad) is really the only avenue open. Remember that last post about USING IT OR LOSING IT? Right. That’s where physio comes in.

My physio journey took on an entirely new level of intense after my baclofen pump surgery. I know you’re going to be shocked to learn this, but my expectations from getting the pump may have been mildly unrealistic. In my mind, I’d have this surgery, spend a few weeks in rehab and come out all bendy and mobile like “Wow! Progressive MS is so not that terrible anymore! Wanna go for a ride with the top down?”

And what actually happened was the beginning of a physio odyssey that I was not prepared for. Four hours in my home a week. I was on medical leave from my full-time job in advertising so OT/PT became my job. I sincerely believed that if I worked hard enough I’d get better and as it turns out, that’s not how this works really.

Franzi, my physiatrist, tells me my baclofen pump journey is painfully typical. He tells me this is more art than science and my degree of spasticity is a hard nut to crack. So we keep trying and my disease keeps changing and injuries and illness aggravate my spastic lower limbs and let’s just say the pump adjustment process is exhausting. Exhausting enough for me to spend a total of 97 days out of last year as a resident of inpatient rehab just trying to get this damn pump right. That’s a lot of days. And we’re not there yet.

As I learned over the last year, weakness and tone (medical term for spasticity) feel suspiciously alike. Because of that, the opinion of a qualified physical therapist is critical to determine when pump adjustments are needed. The truth is, I don’t trust my own opinion on the topic so my PT became a full-time presence in my life.

My first home PT was Aaron and we were together for over a year before the grueling demands of home health sent him running for quality of life (probably one of the saddest days of my post-pump surgery experience). But he deserves everything and then some so off I sent him with my best wishes. Next up was Derek. He’s been with me for about a month now. He’s doing ok. He’s a completely different kind of PT than Aaron was – just different styles. But it’s been good. Grueling. But good.

About that grueling thing.

After my pump surgery I did something I’ve never done in 30 years of working in advertising. I actually took medical leave and was off work for nearly a year.

The reality of my post-surgery life was that physio was my job. Some nights after my 4pm sessions with Aaron in my living room I could barely lift my legs off the ground to get into the kitchen to eat dinner. This was in the pre-wheelchair days. It was scary sometimes to be honest.

My physical therapy crushed me but I felt like post-pump me had one simple job and that job was to get better. If sheer force of will and effort could make a person better, I’d be running marathons about now but instead I’m wheeling around a fancy house in the suburbs still trying to get this pump thing right but this time as an outpatient (thank Sweet baby Jesus).

The big difference now? Now I have an actual job…a job that makes my entire accessible life possible.

Without my job I can’t afford this fancy accessible house. Without my job there is no private health insurance that (mostly) takes care of my ridiculously expensive chronic illness needs.

But even more than all of that, without my job I don’t feel challenged, excited or useful. I know. That might be the most ableist thing I’ve ever said but my ability to use my brain to solve problems for brands and companies makes me happy. I sincerely don’t know what’s wrong with me that I love my work so much but I do. Always have. Even when it was torture. And it often feels like torture. I feel incredibly fortunate to have work that stimulates me. And pays me. And gives me something to think about that isn’t which body part has decided to stop working on any particular day.

Doing my paying job while also trying to do the full time physio thing is a lot. It has been so much that I don’t think my body has been able to manage both very well. I get so nervous before PT that my heart rate goes through the roof and my blood pressure soars. I always hope Derek doesn’t take it personally but I’d understand if he did because I’m pretty consistent.

Also, we all know what makes MS symptoms much much worse don’t we?

MS kryptonite is stress, my friends. My body simply stops working when I’m stressed. It won’t cooperate. It won’t perform on demand when I’ve planned my entire ten hour work day of meetings around my standing four hours a week PT/OT schedule. My body tells me to get used to wheeling around like a speed demon because this stress is killing my lower body mobility plain and simple.

Then this news of my lack of visits available through insurance. I have a chronic illness, folks. I can’t use all 100 visits and assume that I won’t have another hospital stay where home care transition might be necessary. Thirty outpatient visits isn’t even enough to accommodate my weekly shower with a friend that Lauren, the world’s best occupational therapist, is angel enough to continue making time for. I mean, I hope to be able to shower myself sometime in the future and ideally more than once a week – but I’m learning to be realistic and showering with a friend might be my lot in life. Who knows?

So all of that is to say, PT is over for now. OT is going to be focused on one visit a week for my shower. And that’s that. My full time job becomes my only job except for when I do my little exercises throughout the day designed to not allow my muscles to completely atrophy. The constant up and down from the chair to pee a thousand times a day becomes my physical therapy. The setting up of the coffee pot and feeding myself becomes my OT.

I need to focus my energy now on doing whatever physical stuff I can, getting my pump adjusted properly, filling in with some local small muscle Botox and…well. Living.

Just living. No more four times weekly MS Olympics. No more intense physio in between intense meetings while trying to find time to pee and feed myself too. Insurance won’t cover it and I can’t afford to pay out of pocket so it’s an easy decision to make. Blue Cross Blue Shield of Illinois made it for me.

Today was the first day without PT and my first day of focusing my effort on being like the water. I did my best to get some movement in. I did my best to do a good job at my actual job. I fed myself and didn’t pee myself (winning). And now I’m finishing off the day knowing that tomorrow I’ll be doing the very same thing.

Being like the water leaves a lot of space in one’s brain for filling up with anxiety and angst.

Why won’t my ankles bend past neutral today? Why am I have mini-spasms in my feet? Can I hold off on my next pump adjustment until my next appointment with Franzi on May 19? Will the non-slip coating I’m considering putting on my bathroom floor make it less deadly? Will I ever be able to sleep in a bed and not a chair? Will showering all by myself more than once a week ever be an actual thing for me? Will I ever stop obsessing over how schlumpy I look and feel while sitting down all of the time?

Maybe I’ll figure out a different solution for stretching my hyper-flexible yet spastic self that doesn’t involve health insurance or going broke paying a personal trainer?

Am I safe? Am I ok? Can I really make this whole being disabled and living alone thing work?

Am I being realistic about…anything?

Then I remember that I’m doing the opposite of being the water and I remember that maybe one full time job is enough for now. And I consider that the 527 pages of Old Path White Clouds can also be re-read in small chunks.

Emptying such a busy mind to become formless, as Bruce Lee suggested is the secret to a life worth living, is not easy. I learned how to do it once before and it might have taken me a decade to make any sense of my life back then but it did eventually make sense.

Until it didn’t.

And isn’t that just like life? Bruce Lee realized he couldn’t fight water. Water won’t be conquered. It flows.

Wish me luck?