Humpty Dumpty

It's been a rough road orthopedic-ly. I fell. A no big deal, I wouldn't even remember in an hour fall. In my own bedroom on a clear area of the carpeted floor. Just sort of tipped over. The moment I hit the ground I knew I was in trouble and went into immediate denial about how bad it was. You see friends, the pain on my right side, upper back wasn't a bad knot/bruise combo. Not this time...

I fractured a freaking rib! Let me tell you, this particular injury is no joke. I felt like such a cry baby dragging myself to the doctor for tipping over in my own room and then he informed me that the recovery time on this is THREE to FOUR MONTHS!! I'm not a pain meds person so he suggested a brace, but I'm not the same size as most adult humans so I was cautiously hopeful. Now that this intense localized pain had a label it was far more unbearable. The brace was a no-go. So, the doctor prescribed a course of oral steroids to suck all the inflammation out of the surrounding area so the bone would sit right and (fingers crossed) heal. He also set me up for physical therapy.

Here I was with reason number 4,987,230,567 not to fuse your spine. A little "tip over" and you crack a rib. SIGH. Also, I'm used to my impressive pain tolerance and a boatload of distraction seeing me through. This was a horse of another color. Nothing helped. NOTHING. I went to physical therapy and whimpered and complained of pain the entire evaluation. It was embarrassing. I even had to take a second dose of steroids because of a nasty pain spike.

While all this broken rib garbage was going on I went to check in with my hip doctor. It's strange how you only become conscious of the pain in the total complexity of the whole pain...ecosystem? And then you focus in and start singling them out...

No, my hip wasn't broken. I had in the ortho's exact words "a big old nasty bursitis." Lucky me got the big old nasty cortisone injection that goes with that.

After fractured rib and "big old nasty bursitis" you would think I'd be steeled up and ready to face what was next, but I was quite literally dragging my feet to find out what was up with my train wreck of a right ankle. I am not usually a whiner, but the rib injury was making me grouchy between the pain and the depressing thought that it would continue for months I was running awful short on motivation. I finally decided to face the music...

It turns out because I had ankle fusions pre-puberty I know had a severely arthritic joint in my right ankle. When you fuse a joint any joint nearby has to pick up the slack and the overuse of the neighboring joint can severe inflammation aka arthritis.

It really makes me irritable about all the surgical fusing. I'm on the mend, slow and steady. I refused an injection for my ankle and the doctor gave me a topical. Some of my friends were skeptical that it would "do anything." So, I was stunned to discover that it worked. I actually had a surreal period where I imagined my foot must be missing entirely because it didn't hurt. It made me realize what I refer to as a zero on the pain scale is not a zero. It was great and bizarre.

Feeling a little Humpty Dumpty, but I'm healing and working through it. Still, kicking as much ass and taking as many names as possible.

ANTI Anti-inflammatory

It's been a while friends, life has been BUMPY and I needed an outlet. Here's the deal, remember me talking in the past about how terrifying it is to get old in a body that has never been young? A new dimension or I guess complication has arisen. You see, someone very close to me has had health issues related to regular use of anti-inflammatories.

It wasn't a huge surprise that too much Advil can shred your organs. My knee jerk reaction was over-dramatic and consisted of tears and a plan to go cold turkey. Don't get me wrong I do not pop them like they are candy. However, there have been periods of my life when doctors prescribed high doses of anti-inflammatories around the clock. We're talking every 6-8 hours for months.

A few things: First, my muscles are always tight. ALWAYS. Second, I don't like taking medicine. I'm not 100% wholistic or anything, but I refused pain pills after back surgery in favor of extra strength Tylenol, pain breathing and distraction. Third, weird medical things happen to me fairly regularly. So, here I am afraid for my loved one, who will be fine if they lay off anti-inflammatories for life, and panicking for myself.

Personally, Advil and such don't do much for me. It's the kind of thing I take after directing children's theatre on my feet for weeks at time. When I need it I take the maximum dose, usually once in a 24hrs period. If there are particularly strenuous things happening it may go one for anywhere up to a week. What all my pain breathing and distraction and pushing through isn't enough and an over-the-counter analgesics are going to shut down my organs?

I'm a 37-year-old mother of two, cerebral palsy or not Advil is occasionally on the menu. The way I understand it ibuprofen enters the bloodstream and just circulates hoping to come upon inflamed tissues and do its job. Obviously, not the ideal method for delivery and then the leftover Advil soup gets filtered through the poor kidneys. After enough attempts to strain the analgesic from your system the tissues of the kidney become damaged and blood flow, which is crucial, becomes impaired.

Talk to me about your ways to cope with inflammation. Non-obvious things especially are there diets or specific exercises tight people can execute without help that cut it down? Do any of you already have kidney issues related to analgesics? How are you coping?

The Last Time

April 2011, Showing the kids our new house.

So often in life something ends and we stand stupefied and wish we’d have known it was coming to an end. “If only I’d known last time was the last time!” I myself have thought or uttered those words countless times. In that respect, I guess my situation could be worse.

I am walking around my house like a ghost. I am haunting my own house. I was told via a brief typed letter delivered certified mail, that I have to leave my home. I can’t even tell you what the 5.5yrs here have meant to my family and I. I knew several things immediately: that this was irreversible fact and I had to accept it. I also knew that had I not been abruptly put out I would have stayed in this house until my children were adults.

In fact, I’ve seen my kids grown up in this house in my mind many times. I’ve imagined my oldest moving out and turning his room into a craft room while consulting with my youngest on updated room colors. I only imagined my husband and I leaving this house because our children were grown and it was time to travel.

Whatever I wanted or imagined, this is happening. We have to go, because the landlord (who acknowledges what amazing tenants we have always been) wants to give our house to someone else. They have the legal right, but it stills stings. We have to vacate during the holidays in the middle of the school year.

There's a certain oxygen deprivation when you are forced to make a big change especially quickly. There's a separate element to the heartbreak because you have no control. I have never been asked to leave anywhere I've ever lived. It's terrifying that this could happen, is happening. I'm strong and I will heal from this someday, but it makes it hard to trust anyone.

So, I breathe and put one foot in front of the other and try to focus on the task at hand. Maybe this is an opportunity for a grand adventure? A wonderful change? Some future I haven’t imagined a hundred times? We keep swimming. As always, I do what’s best for my kids. I smile and tell them what they need to know. I tell them not to worry. Behind closed doors, I cry. But I seek out the joy in the re-organize and cleanse of the belongings that won’t fit in our next temporary home. I focus on Thanksgiving because this time I know it’s the last time.

The Other Side of Busy

One of my favorite professors in college taught dramatic literature. He would say "drama is the tension between what a character says and does and what they really feel and want." Which means even the most level-headed of people can't truly be free from drama. That's not to suggest it's been a telenovela around here since last I posted, but there has definitely been some struggle beneath the surface as well as actual dramas..and comedies.

The status quo can be difficult for me to accept because the potential for more is always looming around the blurry edges of any mundane moment. I know, I know says the gimpy stay at home mom. Yes, I spent one glorious community theater season finding the old me. It cost my peace of mind, my blood pressure rose, even my ability to ambulate left me more than once, the peace in my household, hours of sleep, gallons of gas and probably countless other things I've forgotten in hindsight, but I did it. I freaking found her! I found the confident, enthusiastic artist I had been so afraid was lost forever. Also, whatever the cost I loved every minute of it. So, tension yes, regrets no.

I still got "it" ladies and gentlemen. Alfre Woodard, the speaker at my college graduation, said something along the lines of "now you've all got your degree. go ahead and pass that to mom, dad, boyfriend, girlfriend whoever because that paper isn't what matters. Trust your training to be there when you need it." Now, I was certain she was right the moment she said it, but hot damn if it didn't hold true all these years later with a giant break from acting and everything! Smart lady.

A scene from "Crimes of the Heart" Sept 2015

Mobility devices and the stage weren't an issue most of my life. If a director thought my gait or lack of balance was an issue I sat down, No biggie. I only had one director insist I use the chair because it gave him "levels." Between you and me I'm pretty sure it just got me on and off faster. These days I'm Dr. House-ing it, I use one cane which I ditch with some frequency. As, I mentioned in a previous post my return to the stage was set in a kitchen so I spent a lot of time at the dining room table. However, more than one person commented that I "flew around that stage" to a degree that they forgot it was me. A) That's awesome B) Being accused of attempted murder tends to light a fire under a gal.

My second show was a horse of a different color because it was mostly a bare stage with chorus risers for the large cast of kiddos. It was funny and fluffy plot-wise, but a big workout physically. I used my cane the whole show except the opening living room scene. My calves burned and my endurance grew. I came down with a terrible upper repertory infection after that one so the post-show exhaustion was elevated to a whole other level.

A scene from "Best Christmas Pageant Ever" Dec 2015

It was during the downtime after the illness finally abated that I was seized with panic that my little glimpse at my old self was over and I'd spend the rest of my life folding laundry and icing my swollen ankles after washing dishes. I started trying to convince myself that I should just see those shows as a reminder that it was still possible and let it rest at that. Um, yeah right!

I reached out to the education department because duh, I have a lot of experience teaching theater to kids. Low and behold, they needed help! Not only did I get to assistant direct the kids for three hours on Saturday mornings, but I was allowed to bring Miss Roo. She's a natural on stage, by the way! It was just amazing. A couple hours of creativity and home for a nap. When did I get so old? I think the kids did it to me.

The show went well and I was invited to direct a summer camp musical. A full musical in two weeks! In the weeks between children's shows, I rested up and auditioned for and was offered the lead in the final show of the season. It was a romantic comedy and I was gung-ho to follow in Meg Ryan's footsteps. This one was more complicated than either of the previous two because the director wanted essentially an empty stage. Without the option to stay put very often on what scant furniture there was I debated heavily on using the cane.

Bottom line, was I just didn't want to for this character if it was avoidable. I wanted both hands free. In the end I literally leaned on my co-star for support.  It was a fun role, but it didn't exactly pack the house. Ironically, I've been stopped in public and complimented more on this role then any other! I even got an award nomination. Adrenaline does a good bit for the struggle to be other than oneself while operating a sub-par mode of transport. I had the funniest picture recently of trying to maneuver a bumper car with the sticky steering wheel down a highway. Then again, there are days when bumper car is the way to go! 

A scene from "Prelude to a Kiss" June 2016

So, How'd it Go?

Ugh, um...good...er well, I guess.

   I feel wrung out just now. I did get really sick right before my birthday, take some trips out of town, go on some auditions, work on  children's theater production, play the lead in a romantic comedy and directed a children's musical in two weeks. All this on top of the day to day stuff obviously. I tried to make it back for more Jedi training in June, but my schedule got crazy and we had a death in the family (perhaps more on that later).

   So, here I am just past the "thank god, things can get back to normal" phase well into "Oh dear god, is this really it?" phase. I'd been so busy I'd thought about catching up on laundry as some great happy goal. Obviously, it made me happy to get through the back log, but seriously? Sigh....

   Project! Over-doing-it, pain, stress, spending down time resting and recovering, being overwhelmed for a cause. End project RELIEF, rest, chores, time...depression. I hate even writing about my "normal life" just now. Uncertainty, plagues me and I hate that I can't ever grow out of the not knowing. The adults had it all together, before I was one. 

  I don't want to complain, but I do want to say because no one ever does being a parent (disabled or otherwise) and a fulfilled human being is really HARD. 

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So, full disclosure this is like draft four or five of this post because it's been a long time coming and I have a lot and nothing to say all at once and I can't let this be a complain post. I will now take a few deep breathes and tell you a lot of things that seemed super significant happened since I posted last, but most were not. 

I continued to try and balance my personal fulfillment with family obligations and physical pain and limitations. Nothing new there, but the battle becomes not letting on how much of an impact things are taking on me physically while being honest with myself. Emotionally, it's been a rewarding theater season/school year. Crap, rewarding? Draft five seems inevitable....

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A Letter to My Ex's Mother

Dear His Mom,

             I just want you to know how much our time as "family" meant to me. Although I knew your wisdom was valuable at the time or knew how much I'd reference it in the future. Your voice lives in my mind even now with those of my most respected mentors. In fact, I think of you more often than your son these days.
             That is not to say I don't remember my long relationship with your amazing son with great fondness, it's just that as inconceivable as it would have been to to me then, my life now is so similar to yours then. I hear and follow your advise all the time these days. I would have laughed if you had told me I'd ever become a mother of two whose days revolve around laundry and shopping lists. Here I am though, here I am. It seems more often then not we're not even aware of the gifts we receive in our youth. I reflect on our talks and wish I had been wise enough to remember more of what was said or ask more questions.
             These days I think of you when I plan out a week of dinners, sort laundry or feel my identity apart from the kids slipping away. Your words from all those years ago bubble up and ring true. You gave me practical advice as well as comfort that I only needed and appreciated later. I know you'll never know your impact on me, but I'm grateful beyond words.
            Thank you for being a role model, friend and a whole lot smarter than I was (to be fair the early twenties aren't usually the smartest years).

Me (older and wiser)

Finding My Footing

For my latest adventure in neuroplasitcity I went to see Lynn at the beginning of November. It had been a long busy month since my last session so I was feeling...tight and unsure. I am usually enthusiastic, if not genuinely confident. She asked me if I wanted to start with an improv or if I wanted to led through something and I 100% wanted to be led. Just an observation, maybe my body having a better sense of what it was in for was...taking me down a peg so I could be present. Maybe that's nonsense, who knows.

I started sitting in a chair, Lynn asked me to choose one of my favorite characters I've played. I picked Babe from Crimes of the Heart since I'd just wrapped up my stellar performance as the youngest Mcgrath. She told me to curl up until I disappeared. In the past when I've been asked to be smaller I waited anxiously for the stretching out that always came next, but my mood lent itself to invisibility. I stayed in my vanished state a few moments before she asked me to "reappear" as Babe. Maybe to someone who isn't a performer this sounds completely bizarre, but I assure you it changes your physicality and that my friends is the whole point.

Next, I rocked front to back and then side to side in the chair. The side to side rocking was much more challenging. It was during this motion that she encouraged me to think of my ribs as an accordion opening. That was a very pleasing image and like a lot of this work made me think of Alice in Wonderland.

Rocking has always been a soothing motion to me, but this rocking had a goal. I was searching for that elusive feeling of being grounded, the openness my habitual muscle tension robs me of and the gift of feeling something else. Lynn asked me to think of my body as a "team" working toward achieving a goal. That sounds very simple and it was exceptionally difficult. I noticed first with some dubiousness and then delight that when I lifted my rib cage I felt a tug on my troublesome shoulder blades.

When I said as much, Lynn rolled out Mr. Skeleton (just like the one my AP biology teacher had) and showed me how lifting my rib cage does tug on my shoulder blades. Neat stuff, but in all the the physical therapy and the "squeeze your shoulder blades and hold them" no one ever said float up your sternum like there's a balloon attached to it or open your ribs like an accordion! These images were far more effective for me than the "strengthen the part that hurts" method.

Lynn talked about how the fascia gets bunched up and creates the feeling that things are "stuck". Tricky, tricky... I already mentioned making my sternum light and we worked with the image of a string from the crown of my head (Pinocchio, anyone?). That image is certainly not new, but in conjunction with open ribs and a light sternum it makes a big difference. We discussed again how I have to change the dialogue from "fighting" my body to communicating with it. Ugh, me and my body forever in couple's counseling.

Next, we focused on my feet for a bit. It's not my feet's fault really somewhere along the line I just started putting all my weight on the right and hardly any on the left and it messes me up pretty bad, pretty often. So we went through putting weight on the toes, then heals, then arches. I have no idea how long this lasted, but I know I could have done it all day. When we stopped I felt weight evenly in both feet in a really wonderful way. I think I said "Woah!" when asked how it felt. It was really great.
After that we decided to give shaking another go. Last session was my first try and very little happened and I was kind of bummed. The procedure was the same this time: I laid on the floor, moved my legs in and out until they fatigued. This time though I shivered all over like I was cold. It was both trippy and encouraging. I think Lynn was right about the shaking increasing over time.

Lynn wanted to see me walk with my cane. I felt annoyed by this prospect, but I am annoyed by my cane in general so that's not a surprise. After watching me hold and walk with cane we decided to adjust it slightly. No issues there, then she suggested I place it more in front than beside me, that was fine too. When she told me to use the wall for support and try switching sides...issues. For the record I switched to this cane when my shoulder blade pain got bad because it fit me better then the previous crutches and because I was supposed to switch sides. Great plan in theory, but I don't switch sides. I've attempted it here and there, but it's no good. Anyway, she asked me to use the cane and the wall for support so I could switch sides. I put the cane in the other hand and promptly burst into tears. I know we had a conversation about why that was, but I was emotional so vulnerability/balance issues some such things. I know that I stood there with the cane in the "wrong hand" a long time before I was ready to take a few tentative steps. Then Lynn said another brilliant thing "Maybe the first step isn't to do it, but to think about doing it. To just rehearse it in your mind until your ready." All the sudden there was a first step and I wasn't a blubbering failure.

Before we departed she gave me the homework to spend ten minutes everyday rocking, opening my ribs like an accordion, etc like the beginning of the session and then doing a movement improv, I left there having the unique feeling of a sensual experience with every step. Toes, heals, arches...two feet. That evening in the shower I wasn't doing my one legged (flamingo) lean against the wall. I was standing on both feet. I hadn't thought about it at all just found myself that way. The following days it happened quite a bit that I'd discover I was standing on both feet. I loved the feeling! It was at my daughter's bus stop two days later that I thought "I wonder how long this will last."

Clumsy Perspective

I know I promised to update the blog when the show was over, but then it was Christmas and illness, life, etc... Before I post about my last Jedi training session I came across a poem which I think I had intended for the open mic night I just missed (illness and obligations). Enjoy or not...

Clumsy Perspective

I am stunned by how normal everyone else is behaving.
I am raw, damaged in a way I'm not accustomed.
Everything is different, my every cell reminds me.
How? How is everyone else speaking in normal volume with ALL THE SCREAMING?
I may prefer the screaming to the silence which is a barrage or varying sensation.
I am inundated with twinges, tickles, itches, pains and all manner of other uninvited guests.
This is MY tea party, however mad.
Why do they all look at me like I'm the same?
I love and loathe the changing.
I grin at the far off place where this is behind me, but this is the starting line.
Before wasn't working, but it was consistently shit.
This is a mad, spinning, loud, sparkling, warm, full, awful, exhilarating existence.
They don't see me in a different way than before.
They ignore a different part of me now.
How? How when there's so much more of me now?
I don't really understand the how, I try, but it's fucking confusing here.
First it isn't there.
Next it is taffy sticky, stiff, stretching with effort.
Soon it is a rock: solid, heavy, smooth.
Then it is a spotlight glaring up at me until I learn to guide it...
And shine it forth

Session With the Jedi Master

Let's do this!

Somehow in the middle of the business of the kids school starting, my return to the stage, an extended family emergency and general life stuff, I managed to squeeze in another neuroplasticity session. This one was special because, Tamar who had started this work with my friend Gregg, was leading this one. If you missed my first post about this work you can find it here: Starting the Process.

I was really looking forward to another session and especially working with Tamar. Lynn was there as well since it was a learning opportunity for all of us. As usual Mike, my husband, came to observe. We opted for some music and got right to it.

I really had no idea what to expect, but here I was, new to all of this and I was meeting with the woman who made all kinds of magic happen in that movie. A lowly little Padawan in the presence of Master Yoda herself. She asked me to sit in a chair and move my hands and wrists to start. I was fine with that but keeping my feet on the floor was causing me major frustration. Hello, spasticity? F-off. How is a girl supposed to concentrate on her body when her body keeps interrupting like a toddler when you're on the phone?!?

We moved on to the the image of water. Floating on water, water around your brain inside your skull, water through your skull and floating your head forward. The image of my body being mostly water was lovely since my muscle tension usually gives me images of planks of wood, held together by rusting old hardware! In reality it is all fluid and therefore changeable. Movement in any direction is (at least theoretically) possible. Then she reminded me of the bony skull around the fluid and told me to bring it up in anticipation of a crown being ceremoniously placed there (does she have my number, or what?!).

Someone (or everyone) observed that I often turn my head to left and purse my lips in concentration. The things I don't notice could fill a book. Speaking of noticing, to keep up the idea of fluidity she asked me to alternate noticing the carpet, furniture and ceiling. Each "noticer" was a different character with distinct characteristics which informed their movement. All this was done while sitting and without breaks in movement. It sounds ridiculous, but it was riot. I was having so much fun and I think watching was entertaining everyone else.

Next I was up on my feet. My stupid, uncooperative feet. I stood holding onto a piece of furniture and we discussed being rooted. We attempted to get weight on both feet by shifting weight from one to the other by "ironing with the pelvis". It worked and suddenly I had weight on my underused left foot. She also reminded me to think rooted and upward. We experimented with different hand placement on the furniture for a bit until BAM I was a freaking oak tree again! Standing up! Grounded with weight on both feet!

I actually had anxiety that I would never be able to lift my left foot. I know my disabled readers are familiar with this horrible anxiety when a drastic physical change happens. After years of scar tissue build up on my hamstrings preventing me from straightening my left knee and then surgery to remove the scar tissue that I was TERRIFIED to bend my knee. I remember thinking "What if I could NEVER straighten it again?". It was a huge irrational fear. She asked me to walk holding onto the furniture, but I kept shaking my head no. I flexed my toes a little, but I didn't dare lift my left foot. Eventually, my overachieving nature overpowered the fear and I took a few steps. I paused between them to make sure I could still feel weight on my left foot.

Next we addressed my mis-alignment. She compared me to an Indian dancer because I was standing (still grounded) in an "S" shape. She said "We need to bring your ribs back over your pelvis." I remember thinking "Yes, bring them back." because that's where they came from. Go home, ribs. Go home. Go home. Go Home! This was a lot trickier than I anticipated, but one should not underestimate the pull of a long standing habit.

As our time was drawing to a close Tamar wanted me to try the "shaking." I was thrilled because I'd seen Gregg do this in the movie and I was so excited to give it a go. The idea is to repeat a simple movement until your nervous system fatigues. In the movie this resulted in Gregg visibly shaking. I laid down on a towel on the floor and did a quick "check in" with my body. The big news was that I totally found the back of my right hip! Score! Then I was told to open and close my legs for a few minutes, but I didn't shake. I felt "hot spots." A burning in my left calf, low and mid back. I was so bummed.

Tamar talked about allowing all the labels to be lifted (bad hip, good knee, etc) which resonated even if it isn't as easy as it sounds. She reminded me to think of it as a journey which is a challenge for my goal oriented mind. She told me I just had to "study" until my body remembers. The thing that really stuck with me was that "All the damage from the CP healed years ago and now it's all just patterns." It's a lot less overwhelming to overcome a stubborn, set in its ways nervous system than a broken body.

Dreams 1, Limitations 0

A scene from "Crimes of the Heart" Sept 2015

Closed Captions are accurate and transcript is available if you click "more" under the video on YouTube.