The Concept of That Thing, Compliments from the Chiropractor and Ingenuity in Training

Sometimes, these entries feel repetitive. I hope they don’t feel like that to you, the reader. But, in many ways, life is certainly repetitive.

Whether it be the old house always needs attention, the dog is always sick, a struggle with weight, mental or physical illness, a bad boss or money problems, each of us seems to have that troubling thing with which we grapple.

If you don’t have that thing, I would love to read your memoir (or maybe not— I might throw it across the room).

So if you keep stopping by or my blog posts keep popping up somewhere in your life, I know I’ve been talking about cerebral palsy a lot. It’s that thing for me, especially right now, as I topple through the second half of my forties.

I have spend most of my life— until the last decade really— denying that that thing made my life difficult. I laughed off accidents, tried to hide my legs, carefully picked my shoes and didn’t talk about it.

But also, and very important in the chronology, until that point, it hadn’t really been an issue. I occasionally feel down, scraped some knees and hands and laughed about it.

But then I started breaking bones, having issues with my spine and hip, and when I fall now, it’s more serious that wash up some scraped flesh and laugh it off.

So, if you don’t already realize, these blog posts are meant to be informative for those seeking situations involving demiplegic spastic cerebral palsy, but also chronicle my acceptance and journey into how to live my life with my disability instead of pretending it doesn’t exist.

We’re learning to co-exist, cerebral palsy and I, in a way that allows me to stay active, be whole, and keep myself safe.

On Monday, I had an uncharacteristic fall at work that seemed to come randomly out of nowhere. I wrote about it here. It scared me because it didn’t feel like my other falls.

I left work at 11 a.m. and came home to rest and write and emotionally decompress. I was scheduled to go to the gym at 6 p.m.

I texted Andrew, my strength and fitness coach at Apex Training. He moved my session to earlier in the day and The Teenager and F. Bean Barker accompanied me to the gym to study my walking and confer with Andrew about the possibility of a work out.

F. Bean Barker, hard at work

We scarcely made it two blocks and The Teen says, “Holy Shit, Mom. You’re right knee is hitting your left leg. You can’t feel that?”

She proceeds to mimic my gait. After half a block, she looks back at me and says, “No wonder your body hurts so much all the time, my hip is killing me already.”

It might seem mocking for her to imitate me on a city street, but for me it’s helpful since I can’t see myself move. That’s why I also like her accompanying me to various assessments as she has no problem telling doctors, “She’s having a good day today. When she’s tired that leg is much fuckier.”

She and Andrew studied me and they stared in bewilderment. They agreed that my left hip was definitely out-of-whack. The Teen left and Andrew got me stretching and doing a thorough workout that safely challenged the muscles that seemed to be malfunctioning.

As happened on Monday when I was achy, the workout made me feel better (which is why I didn’t want to cancel). I have never been good at not overdoing it, so the concept of “being gentle with myself” as my therapist says and “taking it easy” (both emotionally and physically) as my dad would remind me if he were still here, does not come easily to me. It’s especially hard because spasticity means my muscles don’t relax, so motion and exercise really can relieve my symptoms. But if my issues are joint and/or fatigue related exercise can make it worse. And I don’t often know which course of action will help.

I proposed this theory to Andrew: Since cerebral palsy means the brain and the nervous system can’t always communicate, I feel like sometimes those messages goes haywire. That’s when a good, supervised workout (where Andrew can guide my motions and direct me as to what body parts are doing unnatural things) helps my brain re-learn those communication skills. The muscles start to do what they should do because I am thinking consciously about how to do it, which helps the muscles get into the groove, and from there muscle memory takes over, and through doing, the brain resets.

Just my theory.

I woke up Thursday morning with minimal discomfort from my fall (and a new lump and bruise where I walked into a weight bench at the gym, which made Andrew feel terrible). I was looking forward to my appointment with Nicole Jensen of Back in Line Chiropractic and Wellness Center on College Hill in Easton, Pa.

Her daughter had joined her in the office. That made it interesting to have a different kind of conversation about my condition. I was a good example of two things: every patient is different and some patients have self-awareness about their body. And according to Nicole, I am one of the most self-aware in the practice. I was also an unusual example of someone who often “does better” in heels because of the fact that my heel parts (tendons? ligaments?) are so tight. I’m a toe-walker. My heels natural fall at an angle so a slight “kitten” heel replicates the shape of my feet.

I told Nicole about the latest “random” fall and this worried her, because she’s noticed (and I have tracked on a calendar) that my falls have gone from every six weeks to every two weeks. I mentioned that I applied for a mobility service dog through Susquehanna Service Dogs. She loved this. She agrees that I am the perfect candidate for this and that a dog could be a game changer.

I explained that I had mailed the application last week (Friday to be exact) and that The Teenager and Little Dog’s Mom had said they would write my letters of support (which means they support the placement of the dog with me and will take responsibility for making sure I take proper care of the dog once it is in my home). The Teenager planted the idea of a service dog in my head and it took some time, research and more falls to help me accept the idea that I have a disability and that a dog would be able not only to help, but would probably improve (and protect) my quality of life. The Teenager works for a local pet care company.

Little Dog’s Mom has known me for 20 years, trusts me to care for Her Ladyship Sobaka, and is a very responsible dog owner who takes often thrice-daily walks and has a magnificent fenced back yard. A potential service dog would have my small yard for potty breaks and the opportunity to run and play across the street at Little Dog’s house.

My doctor’s office assured me that if I bring the medical assessment form with me to my August 19 check-in, that my primary care physician would not only fill out the form but he would also do it while I was there. I asked my estranged husband of twenty years (and The Teen’s father), the president of the cat rescue where I foster (who left the social work business after decades to open Apricity Pet Care), and my therapist (who has known me for a decade and whose wife is a physical therapist) to fill out the personal reference forms. They all agreed. But back to the chiropractor…

Nicole also said to stand on one foot throughout the day to stabilize my leg muscles. Physical therapy is a fascinating science, the simplest movements can impose the greatest change. My blind friend Nancy discovered that a good portion of her shoulder pain and finger numbness stemmed from not stretching her neck up. As a blind person, she never has a need to turn her head toward the sky or ceiling or someone speaking from the stairs or seeking something on the top shelf by looking for it.

When her very clever physical therapist suggested stretching her neck regularly, her symptoms decreased significantly.

There it is. A lot of words. A lot of thoughts. I’m hoping this post will give you food for thought, reassure you that I am not totally a disaster waiting to happen and/or offer you information on my journey and hope for you if you need it.

Training Update: Finishing Week Three at Apex Training

My body turned to me as I went to my car after work today, and as I fiddled with the radio (calling up Natalie Merchant on Spotify singing Space Oddity), my body said to me,

“Jesus, woman, what are you doing? We need to talk.”

But seriously.

Let’s start at the beginning, shall we? But we can’t spend too much time on all this as it is 1:30 a.m. and my aching body craves sleep.

The teenager was up fairly early today so I suggested she and our almost 1-year-old pit bull/mastiff/black lab puppy walk with me to the gym, about 5 blocks away.

Now if you’re new here… I’m 46 years old, a former newspaper reporter. I have an amazing 17-year-old daughter. Her father and I separated two years ago but he lives nearby and is still an important part of our household. I have cerebral palsy. He has a club hand. I have recently started a quest to learn more about my body, restart my bodybuilding commitment (I was really into it six years ago) as an alternative to traditional physical therapy, and hopefully lose the 20 pounds I gained stress eating to cope with the toxic workplace of the last nonprofit I worked for.

So, the teenager, the dog and I walked up to the gym. F. Bean Barker is learning new manners everyday and the guys at the gym thought she was a beautiful dog.

And then the focus changed to leg day. Now, on upper body day I get to train like a normal person. On lower body day, my poor trainer has to balance my physical deficits with my desire to kick ass.

Or maybe I’m just as awkward both days, and I just never noticed.

Today was session six. It’s the last week of two sessions a week and next week we increase to three.

Please note: I have been in gyms lifting weights since college, which was about 25 years ago, and in recent years I’ve been in physical therapy to learn to walk, for balance, for the strain of my lumbar region caused by trouble with my S1 joint and my broken ankle. Every body is different. Every ailment or disability is different. It is a quest to balance what works for you, what your body needs and what hurts.

I firmly believe that nothing fixes the body like the right exercises. But for people with disabilities or health issues, it’s hard to recognize what pain you need to work through and what hurt is bad. As a weight lifter, I know muscle recovery pain. As a person with a disability, I often experience burning pain.

As a society, I feel like we invest so much money in medical tests, mental health, drugs, organic food, but we don’t want to pay for a trainer.

My trainer is getting to know me. He knows how to observe me. He asks questions about my mobility. We test exercises by going easy at first and adjusting them based on my performance.

And he reads me well.

There are times I can tell he’s afraid of pushing me too far and then I do the exercise and he makes it ten times harder because I surpassed his expectations. This makes him a good trainer because it means he’s testing my basic form and strength so I don’t get hurt. And he reads my body language to see how I’m doing— not relying on my words.

A good trainer has to push you out of your comfort zone. But he also has to make sure everything’s executed for best impact and in a way that you don’t get hurt.

I have to admit, I hated him a little today. But I also love his full body approach. But when he tells me to do sumo squats with a 15-pound dumbbell and my toes pointed out AND make sure my knees “follow” my toes… I don’t know whether to cry or punch him.

It’s the gym— both those feelings are valid.

But let’s examine the issue. My knees face in.

This means to perform the motion he has requested, I need to move one foot at a time carefully into position. I need to really concentrate on balance. As I move, I need to keep my head up, focus on stretching the knees to position in line with my toes (which is not the way they go) while holding a weight and trying not to fall.

I was dripping sweat by the end of this session— before he hands me a kettle bell to end the work out with kettle bells swings.

When I got home, I made a massive high protein vegan pasta. See me make it here (this can also be my official “before” video.)

I ate 90% vegan today. Only animal products I had were half and half for my coffee and a pack of beef jerky at work. I almost had iced tea with local honey but the teenager spilled it when I left it on the dog crate.

This was dinner:

Speaking of dinner— tonight at the Bizzy Hizzy my team competed in the Stitch Fix olympics. We won the gold medal in the egg toss. I was relieved they weren’t real eggs.

In other news:

  • I almost started editing William Prystauk’s latest novel in the Kink Noir series.
  • My Poppy Z. Brite books have arrived.
  • I hurt. I hope it’s the good hurt.
  • My friend Joan not only brought us old linens, but scored a cat carrier and animal crate at a yard sale.