3/30/26 What Happened to Me? Part 2
Wonder Woman: Chapter 1
The faint stench of urine was gone come sunrise. Truly, they did a great job cleaning me and the bed up, all without a power washer! I woke up early at 5am, a side effect of the steroids, and was ready to meet the new day. Breakfast first. The start of my new chapter and rehab journey… at least there were eggs to be had--- and bacon. But they forgot the toast… oh well!
A few notes about part 1 to revisit and then swiftly move on from…
My old friends may have snuck in mozzarella sticks and cereal at some point- truly an epic crime, not to be upstaged by whatever they smuggled in for themselves in Wawa cups…
Having a doctor tell you after three weeks that, “There are just some mysteries we never get to understand,” was not good enough and sent momma bear into a frenzy! Thanks Mom. That doctor may have had good intentions, but her sour delivery made her and the entire team seem rather incompetent. We know that wasn’t the case, so she REALLY did Paoli a disservice.
I am fairly certain I exacted vengeance on an unsuspecting nurse because my hospital delirium was so strong… but vengeance was sweet. Even if it wasn’t entirely fair, even in a helpless state, it’s best not to underestimate what I’m capable of! No regrets- Dante knows what he did and did not do!
My biggest regret was not getting to see the finished production of, “Hadestown,” by my students. I got to watch a bootlegged copy later- so proud of you guys!
My mother and sister had left in a separate car. Meg played the, “Moana,” soundtrack as I was wheeled out of Paoli and into the back of the van to take me to Bryn Mawr. “You’ll probably be up on the second floor. I’ve got friends there,” the chosen small talk of my driver. He played Christmas music on the radio, a subtle reminder of the season and how my health and poverty were preventing me from totally embracing the spirit.
This was going to be a breeze now. No more being confined to a hospital bed and watched like a hawk by nurses and robots. Actually getting up and walking with trained professionals. Life was about to get easier!
I met my doctor on the second floor. Dr M was all I could muster for my first night in Neuro-rehab. He was there to introduce himself as my primary case managing clinician, meet me, meet my concerned and grateful family and tell me the single most important piece of advice I would be given for my entire stay, “Everything you are feeling and thinking right now is normal.”
Hating my current condition, lot in life, inability to walk straight or talk coherently: normal.
Feeling like running away and crying myself to sleep: normal.
The ache of atrophy in my calves and how it felt like they were curling up at night when I slept: normal
Enraged that we still didn’t have definitive answers or a cause for this misery: normal.
Being a smart-ass and making comments on staging a jail-break to get me out of there, climb out onto the roof and jump off the second story height: normal.
Dr. Mithra Maneyapanda was the first of many welcomed faces I would get to meet, but to this day he remains one of the best people I had the pleasure of meeting during what was easily the worst experience of my life.
Lots of firsts, first-thing in the morning on the first day: first speech class, first OT session, first lunch, first PT session… my days usually began at 7am or earlier and ended around 2pm.
Speech was first. A lot of intros. I met Katherine and was given the task to remember her name by learning to associate her. Call me Katherine the Great!
To start any therapy session, every time, I was grilled. Vitals, any pain? Blood pressure, birth date and full name (this would become standard operating procedure for EVERYTHING). I finally asked them if I was going to get a card from them. Or cheekily, “I don’t see how that’s any of your business!”
I was headed to the gym next. Time to get started! I had so many thoughts of how this was going to look. The gymnasium on the second floor, called Maple, was for neuro-rehab patients. More severe injury clients got Oak and patients with amputations and Outpatient guests got the public gym on the first floor. It didn’t need to make sense; I just needed to know where I belonged.
I was given my walker and wheeled down the hall in my stylish wheel chair. Occupational Therapy was next. I was brought to a table where I met a woman who was eager and ready to work with me, her first patient of the day on a Thursday. I was given a box of pegs and holes and told to take them and place them one by one by hand. I was being evaluated.
What sounds, even now, as a simple task, was an absolute challenge. Do this action and do it quick, but don’t rush and don’t exhaust yourself! It didn’t need to make sense. It just needed to be done.
Back to my room, the bed was made and bathroom cleaned. I was lucky to have been given a gift of a blanket by my niece. Not everyone has a, “from home blanket,” and I was sure to avoid getting any urine on it the day before. I had a separate second bed- a lingering threat of a roommate. It never came to pass, and I often wonder how my recovery would have looked if I had to share it with someone else.
Speech Therapy, why for? I knew I could talk. Why did I need this more than once a day?
Because I suffered Brain Damage and it was going to take time to heal.
ADEM (Acute Disseminated Encephalomyelitis) it would later be explained and revisited, with the help of my Neurologist, my mother and Google, is an autoimmune disease that attacks and destroys the protective coating of the nerves near the brain and spinal cord in a process called demyelination. This damage to the nerves prevents healthy communication, filtration, function and reduction of the inflammatory response. Because my nerves were raw and exposed, they were jeopardized and had to deal with some unknown virus, and that’s what took me out. And that is why I needed Speech Therapy: to remind me how to be patient and think critically. And function like a person again.
Speech became my favorite time. Not just because I had an amazing team of therapists, but because I got so much out of working with them and working collaboratively with music therapy and horticultural therapy. Seeing and learning how I process my world and information brought to me, tactics I naturally take… I had to learn to adapt to become stronger. Learning more of a cognitive role rather than the quality of my speaking voice, let alone, my non-existent singing voice became the goal. Cognition, memory, attention, mindfulness of the monotonous… I would soon relearn them all, and I was definitely not above learning from scratch.
Being on a 10 year plus MFR journey, I had the mindset to survive this. Be gentle with yourself, breathe, and be teachable… I knew how to survive this. I give thanks for all those lessons and even though I wasn’t climbing a Cliffside in Sedona, I was definitely in the desert.
My fall at Paoli left a scrape on my side and my back. While there, I also had adhesive stickers rip off skin and hair from a heart monitor machine, resulting in a very unpleasant-looking skin irritant, preventing me from going to the pool. But it was winter, so swimming wasn’t really in season. Besides, I craved another source of water.
The next day, December 4th, OT began with a shower, the first one since November 17th. I turned on the hot water and my grief came out. I had to compose myself because I was being monitored. OT was there to make sure I was okay and could function successfully without slipping on the tile. No unnecessary risks or steps or standing. Extra towels, a shower chair to make life easier, new soap that made me smell like eucalyptus (thanks Mom) and voila- almost instant human! I remember the weight of the water as it poured over me. My sisters’ words about washing my hair rang in my head: how good it would feel, how luxurious it would feel! I could finally rinse the weeks of grime and grief and vomit and stench of hospital rooms and memories away. Revenge on horrible nurses, puke from mismanaged cranberry juice… all down the drain! Not even the extra towels would stop all that mess from washing away. I was one step closer to normal.
OT followed up with “getting ready routine.” I would come to learn that was one of their functions: observe to see how you can handle the major chores of living. Can you wash yourself? Clean your teeth? Brush your hair? Rinse your mouth with discount mouthwash and not trip on your own mess? Did you move your bowels today? Any issues? If not, more stool softener at meals. Any sign of blood in your stool meant some kind of issue, possibly an ulcer or worse, so don’t over wipe with too much tissue and don’t flush until someone sees it and documents it.
I was safe, but observed. Being a fall risk meant I would be watched closely. I had been my own undoing back at Paoli.
Finally, I got to go to Physical Therapy. That’s when I met some of the most wonderful strangers I would meet all year. I promise not to give a day by day account, or regale you all with every therapy session, but lessons abound when you have to relearn how to do it all!
First there was Jen. Jen had been doing this job for decades and I trusted her. That first day, I cracked a joke that I could somehow hear her inner thoughts as if she were screaming them out loud. I told her she should file a, “hostile work environment claim.” Her coworkers heard me and we made some quick jokes and laughed. Those are some of the happiest memories I have of Inpatient Therapy: laughing with my team of healers. Jen made the world something I could connect with again; something I could engage with again.
Jen gave me my first practical lesson on ambulating, or moving about the world. She noticed I did everything face forward, head-long. Take your time and turn all the way around to make sure you are going to sit safely. “Turn all the way around? Like a spinning ‘Wonder Woman?’ When do I get an invisible jet and a lasso that makes people tell the truth?”
She taught me about stepping softly. I called this my choreography practice: tap your foot on each cone but don’t stomp on it. Re-learning how to walk!
I stomp everywhere! I needed to practice gentleness with every step, every action, and every thought. Be gentle with yourself. This advice…
How impatient am I with everything I do? How much pressure do I put on myself and others to meet my heavy expectations? Not just in traffic, but in all aspects of life? How kind am I to myself if I am constantly putting myself through this ringer?
Ask any client I’ve worked with within the past few years, they’ll recite my jargon back to you verbatim: “Be kind to yourself.” How was I ever going to get back to clients?
That’s tomorrow’s problem… let’s work on the blog today.
It was days later but Jen managed to give me an incredible kindness. She asked me how I was doing one morning and I asked her if it were possible to go outside. “I just want to go outside.”
What Jen did next technically broke the rules, and here I am taking an account of it, brazen as brass. She got my wheelchair and her coat, made sure I was warm, in the green sweatpants and long sleeve tee-shirt and flannel I had with me, and we went down to the first floor. We went outside and I got to feel winter for the first time. This simple act made life slightly more tolerable. I was allowed to stand up and touch the door to the downstairs gym, then back to my chair. God forbid I fall out here! Don’t’ even think the “f” word!
But I felt the chill of the courtyard, in view of her superiors. And we were safe. And I felt a little less abnormal for the first time in weeks. I felt heard. I just wanted to feel the outside world, regardless of how cold it was.
Jen taught my mother how to walk with me in my condition. “Family Therapy Education.” It was my first chance to show off. Being told to slow down meant I was getting better and faster. Progress. Mom had injured her knee, so we both could have used PT to recover. We wouldn’t be taking pas around the ward, or going outside.
Weeks later, I got to practice MFR on Jen as part of a Recreational Training session. How long could I stand? Could I perform seated work? Did I have any trouble with anything?
Of all of the things this central nervous system attack took from me: my season, my voice, my ability to walk, my cognition… It hadn’t touched my ability to perform massage. As my first client, I got to give back a fraction of calm to my healer.
What an amazing gift to be able to give! Lift with your knees, not your face!
Jen was responsible for assessing me and marking my improvements with PT standard tests. I knew I now owed it to Jen to get better; to get my life back.
More to come- and sooner this time!
My mentor and teacher, John F Barnes, has an incredible sentiment that seemed only too timely for this season of the heart. While certainly applicable all year long, this catchphrase of his often finds me in the midst of challenge or simply while trying to work with my MFR clients. These five little words pack quite a punch and, like most of John’s practical teachings, invite us to go deeper into the understanding of our world and the inner-standing of our hearts: “What if it was easy?”
This holiday season has been exceptional for my business. I’m still learning and growing, and somehow this website keeps reaching people. I have total strangers buying gift certificates and requesting sessions with me. I have picked up private clients and taken referrals from other practitioners. My personal time has almost whittled away to nothing! Tis the season, or as Kurt Vonnegut would say, “So it goes…”
I was actually able to give myself a paycheck for the end of the year. This baby business has paid for my rent and utilities this month and I couldn’t be happier to share that! The kindness of my clients has truly supported me this season and allowed me to support myself to an incredible level. I feel truly blessed and am so grateful to all of you.
And still, with work picking up, my side gig needing more of my time and commitment, and clients calling out sick (so it goes), I cannot help but ponder this question from John. It always strikes me that he never asks, “What if it were easier?” Easier implies that where we are now needs reprieve. Easier means simplified, easy means simple. To lessen the burden or to remove it completely, “What if it was easy?”
As we gather together with family and friends, rush through the bustling stores and busy traffic patterns, as we spend and save our paychecks, pray that packages arrive on time, as we prepare the meal and the cookies and the pies, as we watch the younger generations feel the magic of the holiday, we may feel that certain pang in the chest reminding us that the things we really want, the wishes we have for ourselves, won't be under a tree or in a stocking. This hard lesson comes around every year at the holidays. Loved ones lost, stresses high, and tears that disarm us when least expected seem to have different weight as each year passes. The innocence and joy of yesteryear gives way to realities that remind us what it means to be thankful. Still, this season does not come without heartache.
“What if it was easy?”
Imagine for a moment. What does easy feel like in your body? How does it move through you? How is your breathing? How do your feet feel, firmly on the solid ground? How do your joints and bones feel with this ease? Can you give yourself this moment?
What does your mind feel like in this ease? Time tables and the rushing responsibilities subside. Deadlines and due dates, de-escalate. Financial burdens and crunches… let them pause. Just for now, take this moment.
What if you could let your heart feel this ease? To let your heart be light. The losses, the separation, the loneliness: let that soften too. The worry of having enough, being enough, giving enough… give that some ease some too.
Feel and know and allow yourself, if only for now, to be at ease. This season has come upon us so rapidly, and in a moment, it will pass. We will wonder, “What happened to our holiday? It feels like we just started and then it was over. It went by so fast…”
So it goes.
Can you give yourself this season? Can you allow this to be the greatest gift you get this year? Can you let it all be easy?
When John asks me this, I often laugh to myself and am immediately flooded with five or ten things that aren’t easy and couldn’t possibly be made easy. I start with those things first. I let each one drop from my hands, losing the grip of control over each one, that precious illusion of control! I fight with myself during this process. I then have to let go of that fight. The path to easy isn’t easy, but what if it was?
We invest so much into the reality that was put on us; the way things are done; the toll and toil we must go through to make it to the end. The truth is we get to the end either way. Why not get there with ease?
This MFR work is constantly teaching me. I am learning every day what it means to let go of the outcome, to let it be easy, to be present and grounded in The Eternal Now.
Be gentle with yourselves, maintain healthy boundaries, and give yourselves permission to let it be easy.
Enjoy your holidays, Pathfinders!
Pathfinder Therapy LLC was established in January of 2023. But so much has happened preceding this business launch. Hours of education, years of practice, and a healing journey that looks a lot prettier on paper than it did in actuality!
My incredible teacher and mentor,
John F Barnes, has taught me that we cannot expect our clients to go to
distances we ourselves are unwilling to travel first. I have often wondered
what doctors and surgeons would say if they had experienced the kinds of
sickness and procedures their patients endure. The response of
medications, poor bedside manner, the pain of surgery and recovery: would medical professionals still prescribe it if they had first hand experience themselves?
We as therapists, practitioners of
the healing arts, have an obligation to our clients to traverse the unknown;
the scary and challenging task that is the healing process. By this example, we
can truly empower and encourage our clients to let go of the hurt and trauma
they have embraced and held onto as foundation in their bodies. Letting go, we
fully and gently walk into our most authentic and free selves; unburdened and
unashamed.
This at times feels like the impossible act: how do I move forward? How do I let go of a history and past that hurt me, that betrayed me, that left me all alone? How do I forgive those that put me here? How do I forgive myself? How do I move on when all I have known is this hurt the world taught me and saddled me with for years?
I wish I had an easy solution for you. I would love to tell you that healing gets easier the more you go through it. The reality is that healing becomes more familiar, but is never promised to be easy. Some moments in life will become softer as we soften to them. Some moments dig their heels down and say, "Not now, not in this season. I'm not ready to let go yet." The challenge here becomes waiting with ourselves for that season to arrive. Our bodies will cling to these patterns until they feel safe enough and ready to let go.
Healing is cyclical; it is complex and layered, stretching out long and far into the past and inviting us to a future we must choose each and every day. And like healing, my journey to get to this point has not been an event. It has taken time. It has taken a willingness to sit with myself in the despair and uncertainty. No one wants to sit in that space, and yet, sometimes, you must in order to fully understand it. Taking the time to ask the question, "What is this trying to teach me," gives us so many more answers than, "Why is this happening to me?" The idea of perfect timing is flawed because all of our timing is already perfect.
I have taken my time on this journey: to my own business, to my own healing, to rediscovering the world I must take part in. I have not rushed this process. Hell, at times, I have dragged my feet, kicking and screaming through the process. Because that kicking and screaming is part of that process. The waiting is part of it. All of our process can look like waste or foolishness to any outside observer. We can judge ourselves in this time of processing, "I should be doing more, trying or working harder. I could have done something differently or in a more timely fashion." None of this serves us. But by removing the judgments of our timeline; by giving ourselves the grace and space to process and heal; in our own time, we flourish.
This website was a major source of chaos for me this year. I wanted it to be perfect (HUGE JUDGEMENT). I wanted it to be everything and more. I had to keep reminding myself that the internet has this special function that allows us to UPDATE. We get to make time, revision and change. I am certain I will post work that has typos and flaws. Hyperlinks won't work correctly, websites will crash. All of that cannot stand in the way of accomplishing the task. But I needed to go through it. I needed to make the information available, professional and then make it mine.
We get to make updates in our lives too. Each time we endure trauma, heartache and loss, we gain the opportunity to grow. We need to be willing to grow.
We do not demand the fruit to ripen; we do not command the flowers to bloom.
It is my intention to grow this business with gentleness and time. When you, dear reader, are ready to launch, I will be here. And while I cannot promise the healing process will be easy, I can promise you that you won't be alone as you go through it. Together, we will find the way.
The following is a Facebook post that popped up on my timeline memories. It seemed only right that on the day of the website launch, that I post it here and share it with you on this platform as well.
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The biggest lie I tell myself is that I am not worthy.
Since I was 11 years old, I can recall feelings of worthlessness. Brought on by false friends, enemies, teachers and people who could not see past the illusion of my appearance, behaviors, methods, and beliefs, I found I could not trust myself.
It is a sad and unfortunate lie to be strapped to, this idea that I am somehow, in some way, undesirable or unacceptable or unworthy. Those that insisted upon imposing this reality on me did their best to influence me as I grew up; challenging me to reinvent what was already perfect in all of my imperfection. They went out of their way to remind me on a regular basis that I was not good enough, that I was found wanting.
After a while, I realized that by listening to these nay-sayers, I gave over to them, surrendered to them, the very best parts of me. The parts I struggle to find now in my adulthood. The parts I endeavor to instill and call into being in others, whether they are clients, friends, students, allies or family. The parts I cannot look at directly when I see them in the mirror. The parts that I sometimes need to remind myself are still there and needing attention. The parts I still hold onto, even when my grip fails and I lose hold of everything, both good and bad, both right and wrong, both complete and incomplete.
These parts, the collective conversation, the song of my life, manage to find me on my weakest days and challenge me to not only remember but to reclaim and reinstate. Choosing love over fear, choosing acceptance over distance, choosing empathy over apathy: that constant and daily reminder that I am more complete and more whole when I can puzzle piece myself back together. Even when the pieces don't fit or align the picture is still visible and more importantly the picture still makes sense.
On my strongest days, I am a warrior and an ambassador. I dance between this world and the spiritual world, standing firmly in both as best as I can, announcing with drums and song why this life is both a blessing and a burden. Yet the war in both worlds wages on, and as a warrior-shaman, I have a responsibility to lead where I was never led, to guide where I have never walked, to teach what I had to learn on my own, and relearn what I was incorrectly taught. I am responsible for being strong in my own self so that others can be strong in their own selves. I am responsible for the light and the dark that I lend to these worlds. I am responsible for the appearance of these worlds and how they invite and deter others from the Divine Conversation.
If I am an unworthy reflection, I would have shattered years ago.
If I am a worthy reflection, I must daily make use of whatever light touches me.
I do not fear that my life has been a waste. I do not fear that my time has been a waste. I do not fear that my love has been a waste.
What I do fear, and am learning to "un-fear" is that the measure of my life is not the same measure of the lives of others. If my life, my art, is singular, even in every representation that stands beside it, I must accept two truths: First that my life, my art is mine and mine alone, regardless of my inspirations or comparisons. Second, I must accept that art critics cannot and will not EVER speak for All, or even a portion of what we know as All. Critics speak for themselves.
So I choose to be worthy. It is a choice at the end and beginning of every day. It is a choice that must be made from moment to moment. In choosing to be worthy, I must make a constant and consistent effort to reflect the light I find in both this world and the spiritual world. We must all make that effort in our choice to be worthy.
The biggest lie I tell myself is that I am unworthy.
The hardest truth to swallow is, even in--- especially in my imperfections, I am worthy.
#knowyourworth
#critiquethis