As I started writing this post (on my damn phone again…grrr), I got the intense urge to go back through my nearly five years of writing this blog to check how many times I’ve used a yin/yang symbol as imagery for a post. The lesson of this universal symbol for balance, though, continues to elude me no matter how often I ponder on its beauty.
The extremes in life are where my soul seems to want to live. The bright or dark. The truth or lie. The happy or sad. The joy or pain (I always wanted to rewrite the lyrics for Rob Base no matter how much I may have loved his song).
I was then and am now somewhat of a fool to believe that this lens through which I insist upon viewing life is of any use at all. It’s in the gray where life mostly happens, where the real in reality becomes an actual thing, but I never seem to stop resisting the lure of the extremes.
Take my new life, for example. “A new life.” It might feel like an extreme way for me to articulate what I’m experiencing right now – dramatic, even for a drama queen such as myself, but in so many ways this is a brand new phase of life I’m attempting to live that sometimes makes my head spin.
I have a new way of physically navigating through the world (the wheelchair). A new place to center me (my new more accessible home). And now, a new way to make my living.
No. I haven’t been fired (thank sweet baby Jesus, then refer to the statement about that new place to live to feel a bit of my immense gratitude for being able to make this statement).
I continue to work for the same company which is shocking from so many perspectives it’s hard to know where to begin. It’s shocking because of Covid that has turned business of every kind on its head; because of the basic nature of the advertising business which is not known for being kind to those of us of a certain age; because of my disability, knowing how rare a thing it is for a disabled human to have a job at all let alone a job like mine. But my company has found a new role for me to play that is very different from the role I was playing before my 2020 of in-patient medical madness began.
My first day back to work on January 4 was my first day as EVP of Business Development and Marketing.
The marketing of a marketing company is kind of a funny job. In simple terms, I’m responsible for leading the effort for my company’s acquisition of new clients. I won’t do this alone, of course. I have a team and it’s an amazing team at that but this shift toward leading growth for an advertising business during a pandemic isn’t what you’d call a low stress position.
I won’t take myself so seriously as to talk in more detail here about working in advertising because the simple truth is that we ad types tend to take ourselves way too seriously so why prove that point here again? I end each day by reminding myself that I’m not a brain surgeon and I’m definitely not saving lives during my days.
It’s much simpler to acknowledge that I’ve gone from having 100% of my time to focus on recovering from my latest MSstrosity (as I’ve come to call my quarterly month-long stays in the hospital that occurred rather reliably in 2020) to having a much smaller percentage of my time to focus on my recovery. A much MUCH smaller percentage.
My work days are blocked from hour to hour back-to-back with video meetings. My brief open calendar spaces are full of unplanned telephone calls and the rare moment to think about what I said I’d do in my last four meetings. And four to five hours each week are blocked out for my hospital recovery home care visits. That means two full hours of PT, two full hours of OT and an hour or so to be examined by my very own visiting nurse.
It was during one of these physical therapy “breaks” last week when I discovered what using my brain full time means for attempting to use my body for an hour or so. When I tried to do my happy little rollator-assisted less than 15 foot walk from my wheelchair to my PT mat to do the recovery work, my legs refused to move. Like at all. Aside from almost face planting, my heart was racing for so many other reasons.
What if I can’t do this what if I suck at my new job and my new life what if I can’t live and work at the same time what if my work ruins the life it enables me to have what if what I can’t what I can’t what if I can’t WHAT IF I CAN’T.
The not being able to move my feet thing happened three more times during my at-home therapy, enough that my OT sessions were more like psychological counseling last week, god bless my OT the beautiful and talented Lauren. Also deserving of a special nod is my very own live-in millennial. For all of you ad types out there who crave a deep understanding of how the millennial brain works, I urge you. Stop doing research and get you a millennial roommate. Holy crap. The insights! The completely mind blowing perspective! But I digress.
Both Lauren and Maddi helped me to understand some basic truths.
Truth number one: Brain work is body work. And vice versa. When you have MS, energy is energy. And it takes time to get used to having your energy so aggressively in demand. More time than my typically impatient self wants to accept. I want everything to be perfect and I want it NOW. Hello? Have we met? If we have, this particular basic truth is kind of obvious. Anything less than instant perfection equals total and complete failure in my twisted world. It’s not only my body that needs recovery it’s also my outdated outrageous expectations of my life.
Truth number two: using my brain for something other than trying to solve the puzzle of my weirdly aggressive MS is really important. I mean, it’s REALLY important for me. It’s why writing is so key to my mental health. It’s also one of the reasons why I’ve often been so sad while on medical leave.
Thinking about how my body is falling apart 24 hours a day 7 days a week and twice that on Fridays is a soul killing mission. Writing about it sometimes helps but having a purpose beyond trying to will this body into behaving like a body should is a requirement for me.
It sometimes makes me laugh in a decidedly unfunny way that the advertising business is the one thing I seem to have buckets of ability to do without much effort. The effort is usually in having patience for the often silly things we ad types do and say in a normal day. It’s oddly comforting though to have a talent for something that makes me a good living. I mean, it wasn’t even a full day into my first day back that I remembered…hey! I’m good at this and I really love being good at this. It’s about more than the paycheck. It’s about the thinking! And the doing. And the thinking more. Repeat. I missed it. I missed it a lot.
Truth number three: three weeks is like three minutes when it comes to adjusting to major life changes (refer to point above about impatience and me). Doing all of these major life changes at once is kind of like the decathlon of life upheaval and beating myself up for not being perfect is really a waste of time and precious energy.
Instead, I’ll try something new. Making small changes to my plans and my life that make giant simultaneous life changes a bit less daunting. My late afternoon physical therapy sessions, for example, worked great for me before. Not so much anymore. I’m going to try changing it up here and there to see if I can make things a slight bit easier on my still-recovering body.
I mean, it’s worth a try. And it’s a try I’m committed to for obvious reasons, leading me to truth number four: There’s no using my brain and having a job I love if I’m not at some level of basic physical function.
Focusing on my health isn’t optional. I need to focus some of my brain power on not forgetting that. Ever.
It’s funny – or maybe it’s not – but I fell on Friday night after an especially deep and delightful sleep. Around 4am when I got out of bed to pee, my feet did that thing where they wouldn’t move once I got them on the ground.
It was the slowest fall I’ve ever had in my life mainly because I was gripping my rollator so desperately to prevent myself from going down that it probably took me a good ten minutes before my arms just gave out and I was ass over teacups on my new hickory hardwood floors.
It was quite the epic fall. I lay on the floor for a good ten minutes before I could get Siri to call Maddi who happened to be having a sleep over with her younger sister in my lower level. They both came running only to find me flat on my back patiently waiting.
I didn’t cry right away. I felt oddly calm. But at the same time I knew for certain that there was no way I was getting up without much more help than these two lovely yet tiny humans could offer. I wasn’t hurt seriously. My body just went into that stone state where it just won’t move at all after a traumatic experience.
I called my brother who thankfully answered on the second ring at 4AM. Maddi called her dad. They both came running over, Maddi’s mom came along too probably for moral support. After I slid around and got myself in front of my wheelchair, those two guys did nothing less than lift me up until my butt was in the chair again. Maddi had yet another assist when she took my legs as her dad and my brother had me under the arms.
It wasn’t my most dignified moment.
In fact, there was a spilt second when they were hoisting me up like a giant sack of really heavy potatoes when I may have wished I was unconscious so I never had to remember that moment ever again. But once I was back in the chair in one piece without peeing my damn pants there was a lot of relieved laughing and sighing in relief amongst my heroes and me. My cat Fred just slept on the bed during the entire ordeal. Because cat.
I know it’s only a matter of time before my entire body turns the deep purple color of an overripe eggplant or my best mulberry smoky eye from days gone by.
I took it super easy both yesterday and today. And as you’d expect, I played that slow fall over and over again in my mind trying to convince myself that it was clear, undeniable evidence that I actually really can’t. I really can’t do all of this. If I could, I wouldn’t have fallen like that I’d have been able to stay on my feet. It wouldn’t have happened. It was proof! I’m not supposed to have a life I love. I’m not supposed to be able to pay for this wonderfully accessible home or have this challenging and exciting job. Or be independent. I’m only supposed to give in to the sadness. I’m only expected to quit. It was fucking proof. As obvious as the epic bruises I’m sure to have by the time I wake up tomorrow for my first video call.
But the idea started to show itself in the corners of my mind when Maddi was talking on the phone to her awesome family telling the story of my epic fall to the few sisters who actually weren’t here to witness it.
I’ve got a whole lot going on in my life right now. So I fell. People fall. People fall and then they get up and it hurts and it’s embarrassing and all of that but it’s not proof of anything other than that I need to be a little nicer to myself. I need to try a few of the strategies Lauren and I talked about, that’s true, and perhaps late afternoon physical therapy isn’t the best idea for me anymore.
Most of all, though, I realized that I need to give myself time. I deserve time! I did all of that time in the hospital and now I deserve this time to recover. And to work. AND to live again. It’s time for me to give myself time for all of those things.
Falling slowly sucked. But I let my people help me back up. How lucky am I? Very. Very fucking lucky.
.
Doreen Espinosa
January 24, 2021 9:51 pmBeth, I am so sorry all this is happening to/with you. As I was reading, I said to myself, Self, she isn’t aware of the Spoon Theory!! You simply can’t be aware of it, otherwise this wouldn’t have surprised you. NOW, look it up on this wonderful internet and read away. It says everything you need to know. You wake up every day with a limited amount of spoons, while Maddie wakes up with an unlimited number of spoons. Unfair?? Definitely!! Let me know what you think of it. I made Mr. Wonderful read it and it made a difference in my life!!
Kristin Hardy
January 25, 2021 10:38 amSorry about the fall. Really glad to hear you’re back at work, though. I can’t possibly agree enough about how crucial it is to have life be about something other than MS. So much the better if it’s something you’re good at, something you get kudos for, and also get paid. The people on the other end of the phone don’t necessarily know you have MS, they just know you’re good at what you do and that’s epically important. That said, you’ve also just taken on a lot of stress, and stress is the enemy when you have MS. Look into stress management – meditation (there is a two-minute meditation technique shown to reduce stress in caregivers, e.g.), putting on a three minute song between calls and flailing your arms around to get your heart rate up, etc. Second, you’re always going to be more functional in the morning. That goes in spades if you take Ampyra. Definitely front load PT in the morning hours. Also, consider breaking it into multiple smaller chunks – less fatigue and better quality exercise, but also, extended periods of time without activity increase spasticity and muscle atrophy, which is a two-for-one nogoodnik. I know, back to back calls but do you have the freedom to block time in between? That’s especially important if other people can put meetings in your calendar for you (gosh, you shouldn’t have. Really. No, really, I mean it). If the crazed schedule make sure MS go south and put you back in the Big House, that’s no help to anyone. And on a note unrelated to this post, another way to lower your bed is to get a low-profile box spring. They are available as shallow as two or 3 inches. Takes a bed from death-defying to reassuringly low. I know, I know, more unsolicited advice. And a final reminder, you are awesome. Put that on a Post-it note and stick it to your bathroom mirror. Remember those savvy, experienced MS people you used to say you hoped to become? Well guess what, I think you have. The membership card should be coming in the mail any day. I think it gets you discounts at TGI Friday’s and the UPS store.
Bethy
January 25, 2021 9:52 pmYou are, as always, the best. Such great advice! I’m grateful. ♥️