Tag: CP

Life with ExoSyms Days 176–200: December or The Power of a Word (Arthritis)

danielleshanti

On December 7th, I had a doctor’s appointment for my back. My doctor asked me to get up on the table, but then she offered to do the exam while I remained seated in the regular chair. Gratefully, I agreed. I can climb up onto those exam tables, but getting down is even trickier. 

She felt and prodded down my spine and the surrounding muscles, up to mid-back and down around my hips. Whenever she asked if there was tenderness, I said yes. Usually, I say something like, “Yes, but that’s always tight and sore.” No longer do I say “Not really.” I don’t try to downplay my pain or be “tough” as we are trained to do. In daily life, yes I function with pain and it’s a normal part of my life. But when I’m at an appointment for pain, I own it. Why yes, actually, since you ask, my whole body is tight and painful.

She put in an order for an x-ray and we moved on to my throat issues. I haven’t followed up since the upper endoscopy in October led to the diagnosis of reactive gastropathy. Again she gave me the same options as before: new ENT referral, referral to integrative medicine, and imaging of the throat (like for a tumor or something else external and not visible from inside the throat). I do have my original GI video appointment in January, which was scheduled before I was able to get in for the “urgent” endoscopy. Since the diet changes and the stopping of all NSAIDs haven’t seemed to improve the gastropathy, I’m interested to see what the GI will suggest. It’s funny, now that I have the diagnosis of an inflamed stomach lining (which didn’t seem to match what I was feeling), I am making connections I didn’t before. Symptoms of reactive gastropathy include feeling full too soon, loss of appetite, and weight loss. Those are definitely not me. But other symptoms are nausea and pain/discomfort in the upper abdomen. And those definitely are me; I’ve just been attributing those to other things. I’ve not found anything connecting gastropathy and throat pain per se, which is the symptom that started this whole thing.

Anyway, I went over to have the lumbar x-ray right after my doctor’s appointment. It’s only the second x-ray I’ve had in my adult life. I was asked to get into several positions on the table, and then had several more taken standing. 

The results revealed that I do not have a compression fracture or narrowing of the disc space that would cause bulging discs.

I do have mild arthritis at the facet joints of the lumbar spine. 

Truthfully, it felt like a bit of a blow. I’ve known since I was a child that doctors predicted arthritis for me by age 40. But to have it confirmed, and in a part of my body that I don’t even think of as one of my main trouble spots, well, it was emotionally rough for a day or so. Because it’s not going away; it’s only going to get worse. 

My dad reminded me that the skeletal system peaks at 30, and that anyone who makes it into their 30s will therefore not have a perfect spine. What’s more, when my physical therapist looked at the x-rays, he said that I was “blessed with beautiful spaces” between each vertebra. So really, at 39 with CP, I could infer from this information that I’m doing pretty well. 

So I have arthritis. Obviously, it was there before November 1st when I injured my back. The arthritis isn’t the culprit in this situation. I could, if I wanted, start looking at treatment like a facet block, a nerve block injection in my spine. But the pain isn’t the problem. The added pain–I’ll say usually a three on the highly subjective pain scale–fits right in with all my other threes/fours/fives and isn’t something that I find overwhelming right now. It’s the decrease in function. I don’t trust my body to get me where I’m going. I mean, I trust it even less than I did before. It’s gotten better, yes. But I’m not where I was pre-November. And it’s possible this is my new normal. If this is my new normal, where does that leave the ExoSyms?

At my last PT appointment, on December 16th, my back was already flared upon arrival because of the walk there. Once it’s flared, that’s it. Nothing’s making it better, but some things could make it worse. So all of the “Let’s try it this way–does that help? How about this way?” All those attempts result in, “No, no better.” Frustrating for the therapist, but normal for me. So we are still at the very beginning. My gait produces a side-to-side motion that hurts my back. I need to strengthen my core and glutes to try to combat the side-to-sideness. But it’s always going to be there to some degree: that’s what having CP is. We don’t want to move too fast and reinjure it, or keep it constantly flared. So I’ve been given the same exercises with variations I’ve been given by various therapists over the years. My PT says maybe just we keep working on my back. And don’t do the exercises every day. Try every other day to start. How nice it was to not have the “three times a day” expectation put on me. To be told to take it slow. Maybe it’ll be a few more months. I can’t deny I felt relief being given “permission” to stay out of the ExoSyms.

I’m afraid to put my Exos back on. That’s the truth. The longer I go without them, the harder it feels to start again. I don’t want to put them on and hurt my back again, or fall on my tailbone again. Even if I don’t full-out hurt myself anew, I know my back will hurt. 

I knew it would be a long, slow process. But I didn’t really contemplate injuries or months-long setbacks, which is a good thing. It’s been six months now since my trip to Hanger. This is day 200 that I’ve owned my ExoSyms. The first day, Ryan said, “You’ll use poles in the beginning, maybe for the first six months.” I knew this was an estimate. I knew that everyone’s journey is different. I’m fine if, years in the future, I’m doing well and look back on my first six months as a bit of a wash. 

But sometimes this crosses my mind: What if the ExoSyms aren’t right for me? What if they’re just too much for my aging body to handle? It’s entirely possible. I can’t deny it. There are no guarantees. This whole thing was an experiment from the start. Then I remind myself, give it a couple more years.


On this final day of 2020, this is where I am. Mentally and physically tired, full of doubt, lacking motivation. Eating lots of cookies. I want my montage song to start, where I face my fears and strap my Exos back on and end triumphant. I want my montage song and I want a nap. I’m not making resolutions or forcing myself to recommit to a list of goals. I don’t know what will happen in 2021. No one can know. There’s comfort in that. Possibility.

Life with Exosyms Days 134–175: November or One Step Forward, Many Steps Back

danielleshanti

26 October–6 December

Here’s how I was walking on Friday, October 30th. This is the last walking update we recorded. 

Sounds ominous, but it’s nothing terrible, really. On Monday the first of November, I had on my Exos and I bent over to pick up the end of my charging cable. Sat down, charged my computer, and thought nothing of it until I stood up again. I had tweaked my lower back and made that muscle on my left upper hip / side body unhappy again. I went for a small walk after work that day, and by the time I made it back to my front door, I realized this wasn’t a small tweak and that things hurt quite a bit. Off came the Exos, and I haven’t put them on since.

For the first few days, I had trouble reaching my toes to put on my socks. (I do this while seated with the ankle over opposite knee.) It’s that sort of back pain/spasm that makes you hold your breath. I hobbled around from furniture to furniture, and spent lots of time resting with the heating pad. “Lots of time” became a month. I can put my socks on now, but I still cannot walk normally (my version of normally). 

It’s a little startling how easy it is to go from someone who walks forty minutes a day to someone who doesn’t leave the house. I didn’t leave the house for a long time, and it felt just fine. How is that possible? I mean, my back hurts, and my throat hurts, but snuggling up in bed with a book or my laptop is the thing I enjoy the most, even when I’m feeling pretty good. So that’s where I’ve been. In my bed. Or at work, in the chair at the end of my bed. My husband goes out for groceries, and PT has been interrupted by my therapist canceling and Thanksgiving. I truly have not needed to go anywhere at all. 

Even though I’m at least minimally functional, I do not feel that putting on my Exos is a safe move. My lower back already feels under strain when I wear them, try as I might to use my core. And if I’m not walking well on my own, adding six pounds of bulky equipment just isn’t a good idea. I’ve come to realize my current strength and ability level isn’t quite ready to handle the Exos. It’s like giving a child a fifty-pound pack to hike with. You can tell them, “This is the perfect pack for you in one to two years.” But expecting them to function safely in it immediately isn’t realistic. Unfortunately, the only way to learn to function properly in my ExoSyms is to wear them.

I just need to approach my Exos differently. If I’m going to use them safely, I must continue to strengthen my glutes and my core. But I can do that without the Exos on. Additionally, instead of wearing my Exos all day, or several hours a day, I need to back up and start more incrementally. Twenty minutes of good, conscious effort, then take them off. It’s better if I don’t put pressure on myself to wear them all the time, or feel guilty if I don’t wear them. Yes, I’ve just lost over a month of potential progress. And yeah, it’s disappointing. But it’s also okay. These are mine now for many years to come.

Before wearing my Exos again, I need to figure out what’s going on with my back, as I’ve never had such an ongoing issue before. Injuries happen. Recovery happens, too. I have had moments of “please don’t let this be a new chronic pain,” and I finally did make a doctor’s appointment, which is tomorrow. I’m crossing my fingers that it’s something I will recover from sooner rather than later.

I still have a reasonable amount of hope that I will reach a time when the Exos make my quality of life better. Until then, I will keep meditating. And I will try to keep getting stronger. And to leave the house.       

Life with ExoSyms Days 113–133: October

danielleshanti

5 October–25 October

On Monday, October 5th, I went back to my primary care doctor to follow up regarding my throat pain. Because my pain is worse, she put an “urgent” note in to the GI, and my referral for January was moved up to October 22nd. How is that possible? Did someone less urgent get bumped? All I have to do is complain more and suddenly there’s a spot for me, not months in the future, but days? So I had a couple of weeks to feel really anxious about being sedated and getting an upper endoscopy. I had not realized this would be the next step, and it feels a little like overkill. My other choices were to go to another ENT, or go the holistic health route. These are all very different levels of treatment–how am I to know the best option? 

I have tried to recommit to wearing my ExoSyms and doing my PT at home. A few days, I have done 100 squishes at lunch time in the time it takes for the microwave to heat my food.

October 8th was the first day with a high in the 70s (78), since…May? And the air quality was moderate. So I went for a walk outside. At 4:30pm. After work. Instead of immediately taking my Exos off. The walk felt pretty good. I’m going faster and I’m less like a wobbly colt. Afterward, my tailbone was achy. I notice that my spastic diplegia aches and pains are more quiet the less I do. Activity wakes them up. It’s an unfortunate truth that right now, I feel better pain-level-wise the less active I am. Despite the mild temperature, I was covered in sweat when I made it back home. And I was glad that I had gone.

Here’s an update from October 9th:

I have continued my daily meditation practice. One meditation I tried begins by telling you to say to yourself, “May I be well. May I be happy. May I be peaceful. May I be loved.” Then you think of someone you love and wish them, “May you be well. May you be happy. May you be peaceful. May you be loved.”  You do the same for an acquaintance or someone you don’t know, like a cashier you see regularly, and then the same for someone in your life that you don’t get along with. It was an interesting exercise, but I didn’t quite feel joy flowing out of me like my guide encouraged me to feel.

On Saturday, October 10th, my husband took us on a day trip. On the freeway, a vehicle alongside us had those “my family” stickers on their window. But instead of cute little stick people and a dog, the “family” was different kinds of guns. I felt horrified, disgusted, deeply sad, and deeply mystified how anyone could become whoever that person was. And then I thought, “May you be well. May you be happy. May you be peaceful. May you be loved.” It surprised me, as I struggled against judging that person, that I recalled those wishes from the meditation that had felt foreign and awkward. I don’t believe that the thoughts of peace and happiness I sent out to the person in that car changed them in any way. But they changed me. My feelings shifted from horror and disgust to peacefulness. And that is a good change.

On the 14th, I had my thirteenth PT session with Exos. C did the required strength measurements again and noticed that my glutes are stronger. I could already feel this, so I’m glad it’s noticeable for my therapist as well. We streamlined my home program after I told her how I’d attempted and adapted the clock from last session. Now we are focusing on mat work without Exos, really trying to get my core to engage consistently and build stamina so it actually works when walking. Obviously, weight shifting and walking practice with Exos on is still expected as well. Our plan going forward is to meet every other week rather than weekly. 

Here’s what I looked like on October 18th:

And here’s the side-by-side comparison for months three and four:

On Thursday, October 22nd, I had the upper endoscopy. Before and after the procedure were unpleasant, but the thing itself is a complete blank. Thank goodness. Everything looks “normal,” as I figured it would, based on the ENT follow up I’d had. Except for some “granular mucosa” in my esophagus. Maybe that will be something?

I feel like doctor-patient communication has a long way to go. I had never before met this doctor when he came to my curtained cubicle to go over my history prior to the procedure. We’re in a very loud environment, both wearing masks, and I feel like we’re not speaking the same language. Somewhere in the huge litany of questions, I told him I was diagnosed with celiac disease in 2018. 

“You have celiac disease?” 

“I had the blood test.”

“And who did that?”

“Dr. —”

“Who?”

“Dr. –” I’m referring to the integrative health doctor who ordered a slew of labs for me two years ago, but whom I haven’t seen since because I feel like every doctor should treat the whole patient, and that I don’t want to schlep to Sacramento when I can walk to my local hospital.

“I don’t know that name.”

“I think she even works in this building.”

“Oh, I know who you mean. The gold standard is an endoscopy, so I can take a biopsy while I’m in there.” 

“Well, I haven’t eaten gluten in two years.” 

“You haven’t eaten gluten in two years?” 

“No.” 

“Well, I don’t think anything will show up then.”

“Right.”

Many people choose not to (or can’t afford to) follow up a positive celiac blood test with an endoscopy. Did he think I was just going to ignore the blood test and keep eating gluten? I know any damage I may have had will probably have healed by now.

What I would like is for a doctor to review a patient’s history and test results himself instead of quizzing a highly anxious patient in a chaotic environment in which he can’t properly hear. I can’t remember the results of all my labs, nor do I know what they mean.

It’s over now, and I await the results of the biopsies taken. Though rest assured I will ruminate about the whole thing for a while to come. For instance, he asked me about chest pain, and I think I said I didn’t have any because “chest pain” makes me think of heart issues. But actually, the honking cough I have makes my chest hurt quite a bit. Is it burning? I think he asked about that? What did I tell him? And why didn’t he ask about SIBO? SIBO is common with celiac. I wish he had tested for that…  How does a throat that hurts this much have no outward signs of inflammation? Do I have some sort of pain feedback loop going on?

Whatever I said to this doctor, he said it didn’t sound like reflux (ENT diagnosis). I tested his theory Friday night by eating chocolate (vegan, gluten free, really good dark stuff). Chocolate is not advised with reflux. Cue a huge uptick in throat and chest pain on Saturday and today. 

On Saturday, while I had the house to myself, I did a nice long meditation and then I did my exercises and put on my ExoSyms for a more focused, extended practice session than I’ve had in a long time. In spite of all this non-CP related pain and health crud, I’m still trying to get stronger and use my Exos.

Life with ExoSyms Days 92–112: My Throat Takes Over

danielleshanti

14 September–4 October

In the last three weeks, I have reached and surpassed the 100 day mark. In June, when I came home from the Hanger Clinic and marked the one hundredth day on my calendar, it felt very far away. I didn’t hope for any specific achievement, as I could not imagine what my progress would be by then. I did take a short walk outside on day 100. But it wasn’t particularly triumphant or celebratory. My husband could see that I was swinging my left leg from my hip, rather than really using my glutes and core to step.

If I were to be honest, I would also admit that, while I have technically owned my ExoSyms for more than one hundred days, I have used them for much fewer. Eighty, seventy-five days out of one hundred? That’s what the gaps signify in the “actual progress” graph below. There are periods of time where nothing happens on the ExoSym front at all.

I know, objectively, that progress is not a steady, uninterrupted line. But I didn’t truly know it until this journey.

Looking back at my notes, I see that these past three weeks haven’t all been stagnation. On September 17th and 18th, I made myself take a walk outside, that same twenty-minute loop I’ve done before, working up to walking to PT with my ExoSyms on my legs instead of on my back in a backpack. There were moments during those walks where I felt like I was reaching my regular walking speed, actually walking rather than think-stepping. That feeling of increased speed–was I finally engaging the struts properly and experiencing the energy return these ExoSyms were designed to provide? It was thrilling, for a moment. Until I stepped on a bump in the sidewalk and was thrown off so much that I nearly fell. How practical are these things going to be if I can only get them to work on perfectly flat, perfectly smooth surfaces?

I don’t have a Day 100 video, but here’s what I looked like on day 96, September 18th. I’m trying to show off my (occasionally) increased speed and my Ida B. Wells t-shirt:

Here’s the side-by-side comparison for two months and three months:

On the 23rd, I had my twelfth physical therapy appointment with ExoSyms. I told C about my falls and we discussed my pattern of losing my balance when turning, especially if I’m holding something. She gave me a new exercise to do, the clock. We have been concentrating on strengthening my weaker left side to combat the hip drop, and to encourage it to hold up my body long enough to allow my right leg to get a good step in. When I’m standing on my left foot and stepping through with my right, the right usually comes down early without a proper heel-toe because my left side isn’t doing its job.

The falls, then, are not surprising because I am again standing on my left foot, stepping with right, turning the upper body, etc. The left side needs to be able to hold me up while the rest of me functions, basically. The new exercise has me standing on the left and moving my right foot to different hours on an imaginary floor clock. I am one hundred percent holding on to furniture while I do this. For reference, I have never had the ability to stand on one foot, and if I were ever going to try to work up to it, the right would have to be my standing leg, not the left.

The whole situation is a little funny because as soon as C watched me attempt to point to twelve o’clock with my right foot, without ankle flexion and the added weight of the ExoSym, she realized that what we needed was the stability the Exo gives my on the left, but not the complication of the Exo on my right. Rather than actually taking off the right Exo and being lopsided, we kept going.

The following day, a Thursday, I did my exercises and I did my small loop outside. And that was really the last time I did much. I actually overdid it, I think, and felt sore (tailbone) and tired the next day.

Monday morning, the 28th, I was going to make myself put my Exos on after three days without them. As I did, I saw that the small metal piece screwed to the front of the right knee cuff was missing. This one has actually fallen off a few times, and I haven’t been diligent about checking and tightening the screw that holds it on. This metal piece is what the knee section locks on to to stay in place. Usually, it’s right on the floor at my feet, but this time it was nowhere to be found. I thought I could just get another one at the hardware store, but when I sent Ryan a picture and asked what it was called, he said it’s not at the hardware store and that he would send me one that day. It didn’t arrive until Friday. Could I have worn the Exos without the knee sections? Yeah. Could I have practiced the clock with just the left one on, just to see what it was like? Yeah. Did I? No. (For the record, I have in the past worn my Exos without the knee sections, and it was a fascinating combination of way less bulky and heavy but also way more unstable.)

So my Exos were all back together by Friday. Today is Sunday. I did wear them yesterday, and I even did the clock a few times. But my ExoSym life has been derailed by the rest of my life. 

Whatever we’ve got going on healthwise, stress and anxiety make it worse. Health issues can also cause stress and anxiety. So we are in a circle that is difficult to get out of. This is an ExoSym and cerebral palsy blog, and no one’s really interested in your ailments as much as you are, I know. And I’ll never know if you stop reading now.

I’ve had a low-grade sore throat for a year-and-a-half to two years-ish. It was always worse on Mondays when I had to return to work and use my teacher voice. Eventually, it got bad enough that it felt sharp, like something viral. It ended up being mild strep that time, May 2019. Months later, when the soreness hadn’t gone away, I got tested again and it wasn’t strep, so I was sent to an ENT (further months later, of course).

He could see inflammation and diagnosed me with laryngopharyngeal reflux (LPR). Since my diet is already pretty good and I don’t smoke, the best he could do was “bring down the spicy food from hot to medium,” and he got to check off that he discussed diet and lifestyle changes. Gave me a prescription for three months of reflux medication and sent me on my way. I was skeptical about this whole process because reflux can be caused by low stomach acid as well as high, and I didn’t like being put on a medication to lower it when we didn’t know what was causing the reflux in the first place. At my follow up (many months later, postponed because of COVID), the inflammation was gone, but my pain wasn’t. Because the inflammation had healed, it looked like the doctor had made the right choice, but since the pain hadn’t improved, he referred me to a gastroenterologist. I wasn’t looking forward to seeing another specialist, who probably wouldn’t find anything, so I put off making the appointment.

Then it was mid-September, and it was time for me to start teaching my groups through distance learning. I noticed a dramatic increase in my pain. Had my reflux flared? Is it strep again? It’s nearly unbearable. Anyone else get that thing where when the pain is bad enough, a headache and a touch of nausea show up, so you just feel downright ill? Sometimes I do actually vomit, as with the neck tension. I made the appointment with the GI doctor (months away, of course).

What’s funny to me is that I feel like I’m handling distance learning so much better this time around. I’ve always been an anxious person, and there’s oh-so-much to be anxious about right now, but I thought I was taking everything in stride, so to speak.

Last weekend, I read up on LPR again and cut out spicy food and acidic food, citrus, tomato products, garlic, fatty foods, chocolate. As a vegan with celiac disease who loves coconut curry and salsa, I have little enjoyment in what is left. I sleep propped up. I try over-the-counter antacids. I attempt to implement a more regular meditation practice, because, of course, along with cutting out everything with flavor, reflux sufferers should reduce stress.

Today will be the seventh consecutive day I’ve meditated, which is new for me. Thursday and Friday I managed to meditate before work, after work, and before bed. I’ve certainly never meditated more than once a day before. I’m fortunate to have the time and space to do this, and it might be exactly what I need. With yoga, pilates, meditation, and every other de-stress/mindful practice, it’s so hard for me to really believe in “the power of the breath.” I mean, it sounds pretty woo-woo. We breathe all the time. Does taking mindful breaths really change things all that much? 

I feel like I already have compassion for myself and my body, but doing all these compassionate body scans and “affectionate breathing” has been really interesting. It was a bit of a revelation to have a moment of understanding that I am not my body. I myself am separate from it. It is the vessel that I have, but it isn’t me. Of course, the reverse is also simultaneously true. Existence is complicated. 

One body scan starts with the left toes. By the time we reached my left hip, I was crying. Another started with the crown of the head, and by the time we reached the forehead, I was crying. I think we all need to lie down in the quiet darkness, take a deep breath, and listen to a gentle, calm, compassionate person guide us through our own bodies. We, all of us, need gentle, calm compassion.

I first tried mindful breathing about thirteen years ago during the relaxation section of Yoga for the Rest of Us. It’s taken me until now, with more regular practice, to actually feel the physical and mental effects, and now only sometimes. So, if you try it and think it isn’t for you, try it again.

I thought I’d leave a few of the meditations I’ve really come to enjoy down below. Some have a more professional quality than others. All have helped me.

Life with ExoSyms Days 50–62: They’re Alive!

danielleshanti

3 August–15 August

On Monday, August 3rd, I notice more low back pain than usual. Enough that walking is pretty painful. The pain in my left upper hip/torso is easing, so it’s kind of like the pain just moved around back. As I’ve said, I won’t be surprised by any new pain that arises during this process. But it does make me feel like I’m not being very successful at increasing core strength. My back should be hurting less as I become stronger, not more.

Since Thursday the 6th of August, I can feel my glutes in a new way. What I mean is, I feel as though there are muscles in there that weren’t there before. It’s very odd, because I didn’t know that I wasn’t feeling them–you know? I thought I was. The clamshell, the bridge, even planking. All of these are exercises I’ve been doing for years. When Jared at Hanger and C, my physical therapist, tell me, “Squeeze your buns together,” by gosh I do it. Usually, I lose whatever core engagement I had, but I do feel that I’m squeezing my buns. 

But this is what happens on Thursday the 6th of August. I am doing my side lying leg lift on the left, with my knees bent. I am supposed to hold the lift with my knees at 90 degrees, then move my knees away from my body, still bent, lift and hold again, etcetera, for a total of one minute. This has been very challenging. But this day, when I lift my left leg and hold, yes the burning starts right away, but eventually there is also just more. More squeezing, more engagement. I can feel the muscle contracting inside my body. Once that engagement happens, it’s easier to hold my leg up, to lift it higher, to keep my core engaged. There’s less IT band burning and less upper body compensation. It’s another moment of “Oh, this is what it’s supposed to have felt like all this time.” 

Imagine that someone hands you a heavy box. You hold it in your hands, fingers, wrists, and arms straining. Suddenly, another hand joins yours and helps you lift the box. So much better, right? Now imagine that the helping hand is actually your own. You thought you were using both, but you’d only been using one. That’s the best way I can think to describe it. 

So why has it taken so long, when I’ve been given these same exercises over and over all my life? It’s the ExoSyms. Spending two hours in the test devices last November introduced me to my glutes medius. These muscles that I’d never felt before were sore simply from walking in the devices, without any conscious effort to engage my glutes.

Now the conscious ability is there. I can squeeze my buns lying down. Standing up while brushing my teeth. Sitting here at the laptop. I can contract one and then the other. When I’m doing my leg lift and I engage them both, it feels so different than it did before. So much more draws together inside. I have ample enough padding that I don’t think I’d be able to see or feel the movement from the outside, but it’s there. My bottom, backside, tush, derriere, the muscles in there–they’re alive! Do I have absolute command over them now? Nope. It still takes a few tries, a little delay before they do my bidding most times. But when you’ve never felt anything different–and you don’t know that there is something different to feel–when a change happens, it’s really something. 

Friday the 7th of August I veto the walking video update because of the back pain. 

I am in San Francisco visiting family for a while, and I have a reprieve from schlepping back and forth to PT and OT for the next few weeks.

Saturday I feel like my back might be improving, so I add the standing modified plank/squish back in.

Sunday it feels like the left upper side pain is returning so I take the plank back out. I do about an hour of weight-shifting and walking practice and my new butt muscles are tired.

By Monday the 10th of August, I feel like my back has recovered to its normal levels of stiffness/soreness. One week of back issues is much better than several weeks of the side pain. 

On Tuesday, I try doing five or six short sessions throughout the day again. (Notice how I don’t succeed in increasing the number of sessions.) I do lots of SLOW walking practice, trying to focus on the left glute/no hip drop. That leads to me putting added pressure on my right pole, and my forearm and thumb, and they are burning by evening.

Wednesday, I lay off the poles to give my arms a break, except for one short walk outside. I do wear my Exos around the house for most of the day. 

Thursday I don’t use the poles either, but I do try several trips up and down some carpeted stairs. That’s exhausting, and not great on my knees. Most of the day I’m sitting at a desk with my Exos on. My right wrist is much more crunchy than usual and my forearm still burns.

Saturday the 15th of August, I do another short walk outside in the morning. It’s heatwave time in California now, so when I make it back inside, off come the ExoSyms and the sweat-soaked knee sleeves, and they don’t go back on after that.

We did manage a short video update after skipping one the week before. Without much outside practice, there’s probably not a marked improvement from the last one. Suddenly, I’m entering my third month of life in ExoSyms.   

Day 62

And here’s a side-by-side comparison at month one and month two. Doesn’t look or feel like a big difference for me.

Day 33 versus Day 62

Life with ExoSyms Days 37–49: Keepin’ On

danielleshanti

21 July–2 August

No great revelations or fantastic progress lately. 

On Tuesday, July 21st, I try breaking up my walking practice into smaller chunks throughout the day to see if I can keep the quality up instead of wearing myself out doing an hour at once. The idea is to add in more chunks, so that I’m doing higher quality walking, and more of it overall. 

Turns out, I really dislike being on a schedule like that. I tried walking for ten minutes every hour. It’s ideal, really, to get up and walk around at regular intervals. I know this. But I don’t like it. I think I only did an hour total anyway. Was it better quality than doing an hour at once? Not sure.

Wednesday I have my sixth PT session. We add an exercise to my home program where I lie on my right side, legs bent at 90 degrees and lift the left leg up, keeping the foot level with the knee. This is a variation of the hated clamshell that targets the glutes. Then I move my knees farther away from my body with each one, still keeping them bent. I am supposed to hold it 5–10 seconds at a time, for a minute total. I find this exercise, while better than the clamshell, still incredibly difficult. The muscles from hip to knee on my outer thigh begin to burn almost instantly, and I barely feel it in my glutes, which is where I’m supposed to feel it the most. I am nowhere near being able to do a minute total yet. We also add a tailbone lift onto the pelvic tilts to work back toward a bridge. 

The dreaded clamshell.
Leg lift. My bottom leg is also bent. I’m supposed to maintain at least a fist of space between my knees. This is nearly impossible.

I also have my second ever OT session for my wrists. The woman who worked magic with cocoa butter in June has moved to another office. The new guy uses a plastic tool, like a scraper, to massage my forearms. He gives me a series of isometric exercises to do. I am hopeful for the improvement in my neck and shoulders that I felt last time, but it does not happen.

This is what I write in my physical therapy journal after returning from PT, doing my home program (mat work), and putting my Exos back on: “So deeply tired. Any walking practice would end with me on my face.”

On Friday, July 24th, I send my fifth update video to Ryan. He is encouraging, telling me that I look good, that the pain on my left side that I’ve experienced all week should lessen as I become stronger.

Day 40.

I notice as I practice walking and “marching,” that the marching is becoming easier. This is something I was assigned at my first PT session on July 8th, standing with my poles and lifting up one leg and then the other (while trying not to let the hip drop). The poles did not give me enough stability to lift my knees high. Now I can do it.

Monday July 27th, I have my seventh PT session. I remove my Exos and we go over ways to improve my left leg lift to target the glute rather than the whole outer quad. I also strain my neck and shoulders with the effort. C suggests I do a different exercise when I feel my neck and shoulder tense. I try to explain that my neck and shoulders engage regardless of the exercise I’m doing. She explains that we want to undo that pattern. I understand that, but is that achievable? I feel stuck.

I notice that when I’m on my knees (as when I’m getting up from the mat after exercises at home), that’s when I can really feel my glutes engage. I also have a wider base for balance. I ask C whether it’s a good idea to do weight shifting practice on my knees. She says sure and we try some stuff out. I’m glad that sometimes I bring in ideas that she may not have thought about.

On Tuesday, I manage to put my Exos on nice and early and go for a walk outside. “Outside” has begun to loom large in my mind, and I need to make sure I practice walking both in- and outdoors. Is it that I’m in “public”? Is it that I’m alone, depending on passing strangers if I fall? Why does it feel so different? Partly mental, partly physical. I do twenty minutes, and, yup, it feels stiff and lopsided like always.

Wednesday is my eighth PT session. I put on my Exos early and go for another twenty minute walk outside first. Then my husband drives me to PT, so I already have my Exos on when I get there! A one-minute ride feels extravagant, but it’s really nice. We work on my “turn out.” I try putting my foot on a pillowcase on the smooth floor and sliding the toes outward. Go slow, and hold it there with energy. No thirty reps like with Jared during training week. It’s very apparent when I’m standing in my natural state that my toes point outward and my knee points inward. The consensus is that toes out is better than toes in (my childhood gait, pre-surgery), and that we’d like to get the knee to track better with the toes.

I don’t know how to make my knee go out there. On the right, it’s much less profound, and I can press into my Exos and move my own knee. But on the left? Nope. Another complete brain blank. How bizarre it is to be able to understand and execute something challenging on the right, and have nothing there on the left. Even within my own body, I’m unable to translate a movement from one side to the other (so far?). As you might imagine, the wonky alignment on the left puts significant pressure on my knee, which leads to some tweaking and pulling and pain. So there’s that.

In my next OT appointment, the therapist sets aside the idea that my wrist and thumb issues developed from trekking pole use and takes another tack. After I reiterate my trouble with opening jars he thinks maybe I have thumb arthritis. He tells me to use proper tools instead of straining the muscles, and gives me some “theraputty” exercises. I don’t think I have arthritis, but I’m game to work on hand strength.

I am free of PT for a couple weeks while my therapist is away, and I have graduated to once-a-week sessions when we resume.

It’s been two weeks of left upper hip/torso pain, but it is improving. Left knee tweaky. SI joints are a bit off. Practice continues.

Somehow, it’s August, and I send my sixth walking update to Ryan.

Day 49.

Life with ExoSyms Day 36: You Can Put ExoSyms on the CP, but…

danielleshanti

20 July

Throughout my physical therapy career, people have been telling me I sink into my hip, or drop the hip. When they demonstrate, I have this moment of recognition: “Oh, hello, me. There you are.” It’s a little bit amazing to see myself reflected in them, and to know that I am seen and understood enough to be replicated.

It happened throughout training week, and it’s been happening throughout PT since I’ve been home as well: “We want to get from this”–demonstrates uneven pelvis–“to this”–magically evens out pelvis.

I see it. I understand it. I know I do the first one. I cannot make my body do the second one.

We practice shifting weight from one leg to the other while keeping the core and glutes strong. When I am on my left foot, my right hip sinks. I cannot really feel this. 

“Try to bring that hip up. Press into my hand.”

My brain is a complete blank. It has nothing to communicate to the right hip. My brain does not know how to bring the right hip up.

“How do I do that?” I ask. “Which muscles am I supposed to be using to do that?” I ask more specifically.

It’s the left glute medius that’s supposed to be doing it. The one that I’m using to stand on, already engaging it as much as I can.

I have these two truths, and I don’t know how to balance them:

  1. I am only one month in, and I will get stronger.
  2. I have cerebral palsy. We are working on exactly the same stuff I’ve always worked on, but with giant braces and poles added to the mix. Sometimes I want to say, “Hey, I still have CP under these things, you know!” You can put ExoSyms on the CP, but you can’t take the CP out of the ExoSym wearer. Or something.

The good thing about my physical therapy is that it’s connected to my hospital system. That means I have access to the after visit summary and notes for each session just as if it were a doctor’s appointment. Still taken aback by my experience of utter nothingness when asked to perform an action, I click on the notes for that morning’s therapy session.

I can read what C writes as her own record, with all the professional vocabulary. She writes about Trendelenburg gait a lot. I look it up. That’s what “hip drop” is. I’ve probably been told before. It’s quite something to see drawing after drawing of what I look like. And that it has a name. I look at the images and read descriptions of it, but still have a hard time understanding the mechanics in relation to my own body. A positive Trendelenburg sign (hip drop) indicates weakness on the opposite side. I think I’ve always assumed that since my left side is weaker, that must be the side that drops more. (Since I don’t actually feel it as it’s happening, nor connect the mirror image of someone demonstrating it to my own body.) Also let’s be clear: both hips are weak; the left is weaker.

After the morning’s PT and afternoon’s research, I really want to understand what this means for me. All these years of people showing me my side-to-side sway, telling me I have muscle weakness and increased tone, and my nodding, yes, that’s true, that’s what I look like. But I still don’t really get it–or get how I’m supposed to do anything about it. After all, the small amounts that I’ve increased my strength over the years have not resulted in a noticeably more even gait. How much is it actually possible to change what’s always been there?

What’s more, I experience my CP as muscle spasticity and lack of balance, not weakness. How do you know that your muscles are “weak” if you’ve never known what “strong” feels like?

I stand in front of our full-length mirror with my Exos on, shirt pulled up and shorts tugged low so I can really see my hips. Right hand on furniture for support. I practice weight shifting. The mirror helps some, but it still feels like a disconnect between the image and my body. (Perhaps this is some sort of sensory/processing thing?) I don’t know how to make the image do what I want.

Concentrating on my core and my glutes, working in almost slow motion, I happen to look down at my hips the moment that shift to the left happens. I see it and I feel it. As I put weight on my left foot, I see my left hip shift out and up past center, with a bit of a twist. My left hip goes up. My right hip falls. I do it again to confirm. Repeat it to show myself I can do it on purpose–and undo it. There it is. My hip drop. My positive Trendelenburg sign. The muscles around my hip are not strong enough to hold my left side up over my foot and everything shifts and collapses. But I can cheat it back into place using my right side and my hand to help. Hips level again, I tell myself, This is where my muscles are supposed to hold me; this is what upright feels like. It’s only taken thirty-nine years for my body and my brain to connect this way.

Let’s revisit my two truths above: I have the capacity to strengthen muscles. Cerebral palsy does and always will affect those muscles. Truth three: The future is unknowable. 

Right now, ironically, I am unable to imagine what it would feel like to walk in my Exos as easily as I walk without them. And yet, the Exos have the potential to help me be more “able” than I’ve ever been. I cannot imagine it, but I believe it’s there.

Day 1 versus Day 33

Life with ExoSyms Day 7–8: What Happened?

danielleshanti

Sunday, 21 June–Monday, 22 June.

The Sunday following training week was another travel day, from Oregon to California. I did not wear my ExoSyms in the car, for comfort and for the previous laborious/yucky experience of using a public restroom.

My husband and I were reunited, and he was taking me to the redwoods. We checked into our cabin and ate some dinner. Then it was finally time to show him my Exosyms. I had put them on that morning, about twelve hours earlier, for a few minutes of practice before the long car trip to meet up with my husband. I put on my brace sleeves. Then the right device, and–I couldn’t close the knee cuff! I really squeezed my calf, trying to close the top part of the brace. It simply would not close. Not just a little–there was quite a gap. My mind raced: Okay, I’ve been sitting in the car all day. Too much salt. Not enough water. Do calves really bloat/swell this much? My calves are supposed to shrink now, not get bigger!

The left side was a little better, but didn’t close all the way either. I was still able to Velcro the cuffs “closed” and attach the knee sections over them and practice walking for a few minutes. There are bound to be changes and surprises, but it was a little disconcerting for this to happen as soon as I left Hanger. I didn’t want to have to think about sending them back for adjustments already. I resolved not to panic and to just wait it out.

Monday morning we drove on an aptly named scenic parkway to Prairie Creek Redwoods State Park to try to find the accessible trails we’d read about. I did not even contemplate trying to wear my ExoSyms out in the wild, but this would be the first time I used my trekking poles to “trek.” 

I tried to do my “squish” (engage my core), keep my poles close to my body, and keep my shoulders back and head up. Because I was holding my poles, I was not holding my husband’s hand as I would have been without them. And by “holding my husband’s hand,” I mean, gripping it, pulling it, nearly dislocating his shoulder. I even tried going up a step or two with just the poles before resorting to the (overgrown) handrail. We went over wooden bridges, and lots and lots of roots, and I did just fine. We saw snails and frogs. The air was cool. The trees were magnificent. And it was good.

After that, it was finally time to return to my life at home. With ExoSyms.

Life with ExoSyms Day 6: Shoes

danielleshanti

Saturday, 20 June.

If you are on an ExoSym journey, you will hear a lot of talk about the store Wide Shoes Only in Renton, WA, about thirty-six miles from the Hanger Clinic in Gig Harbor.

We were not about to add seventy-two miles round trip to our drive south to Oregon the day we left Gig Harbor. But the discomfort I was experiencing on the top of my right foot and the continued recommendations from Ryan convinced us we should go.

Of course, the store was closed because of COVID-19, but we left a message and the owner got back to us, scheduling an appointment for us at 10am Saturday.

We packed up and I suited up, and we arrived in Renton early. By then, I needed to use the bathroom, so we drove to a waterfront park and pulled up near a picnic area with public restrooms. I approached the dreaded ramp out of the parking lot with snail-like speed, realizing with alarm that I had practiced stairs during training, but we never got to inclines! Ryan had mentioned something about going sideways, so I tried that. Kind of. Eventually, I made it to the restrooms. Give yourself lots of extra time in the beginning to reach important destinations like these.

Here’s something I’m not wild about. I got into the stall, settled my poles against the wall so they wouldn’t fall over, got the door closed, situated self on toilet, peed, got up. Then I had to handle my poles again. BEFORE WASHING MY HANDS. There’s no way around it until I can walk short distances without poles. I suppose while the pandemic lasts, there won’t be that many public restrooms in my future anyway.

Back at Wide Shoes Only for our appointment, Dominic measured my feet with my ExoSyms on. This man is a shoe professional and he is enthusiastic about it. Ryan is the ExoSym inventor and expert, and Dominic is the ExoSyms-with-shoes expert. No other shoe salesperson will know anything about ExoSyms until you walk in with yours and teach them. So Dominic taught me how to buy–and wear–shoes with ExoSyms. 

First, Ryan doesn’t stock half-sizes at the Hanger Clinic, so do not take the shoes that Ryan provides for training week as the right shoes for you. It’s so important to be properly fitted; shoes that fit correctly make a difference in your ExoSym experience. It’s more than a little unfortunate that most of us are probably learning to walk (and work out) in ill-fitting shoes.

Second, the shoe shape (the “last”) is more important than the shoe size. Two different New Balance size 8s will feel different because they are different shapes. Pay attention to the model. Select a shoe with a roll bar for stability. 

Huh. Look at that. It says “roll bar” right on the shoe.

Without ExoSyms, I wear an eight, with a narrowish foot. It’s definitely easier to deal with shoes if you have two Exos and don’t have to split sizes. I also have two heel lift inserts that are the same height and will need to be worn with whatever footwear I’m choosing. Ryan put me in a 9 2E (left photo). Dominic put me in an 8.5 4E, the widest (right photo). Shoes that are too long will cause you to walk toes out and swing your leg around (think walking in flippers). I definitely do this, though I’m sure it’s not just because my shoes were a little big. Because of the lace guard that Ryan had given me for pain on the top of my right foot, Dominic showed me how to lace my right shoe completely differently. I had been wearing the 2Es with the laces as loose as they could be with barely enough left to tie. Dominic made sure I tapped my heel on the floor before tying my shoes very tightly at the ankle. A snug fit ensures that the brace doesn’t slip forward and backward in the shoe with each step. I was nervous it would be too tight and uncomfortable, but Dominic knows what he’s doing.

I hate shopping for shoes. If I find a pair I like, I’ve been known to buy two pairs so I don’t have to shop again for a while. I especially find it unbearable when the salesperson tries to help me put the new shoes on, bent over on their rolling seat with me trying to get my foot onto the slanted front. My foot goes stiff when it’s being wrangled into a shoe, so I usually say, “I’ll do it.” With Dominic and the ExoSym, my foot was already encased in the stiffest material imaginable, so it didn’t matter if it flexed involuntarily, and he had no problem getting shoes on and off for me. What a lovely, calm, unawkward experience it was to have the store to ourselves as well. 

I left with so much new knowledge and three pairs of shoes. I have New Balances for every day, a “casual” pair, and “dressy” pair. The latter two will probably last me many years because they won’t be worn very frequently. 

The takeaway: Do what you can to go to Wide Shoes Only and get fitted properly. It’s probably good to call so you can come in at a quieter time. Take what you learn home with you to your local stores. Leave room in your luggage for new shoes.

After he knows your size and your needs, you can also email Dominic about a shoe that you like the look of, and he will help you find a similar one that will work for you.

I’m so glad we took the extra time and miles to not only support a family business, but also to get me a good shoe education.

Life with ExoSyms Day 5: Training Week at Hanger Clinic

danielleshanti

Training Day Five: Friday 19 June. 9:30–11:30, 2:00–4:00

Last night I fell asleep to a soothing voice intone, “Now we begin our body scan…” I hope all these meditations I don’t manage to stay awake for still help me subconsciously. Burning upper back woke me in the night.

This morning, I wait for the text from Ryan to let me know that my knee sections have been delivered. I am nervous; it feels like such a long build up. Jared has warned me, “It’s a lot of equipment. It’s going to seem heavy.” Ryan has assured me, “You’re going to make so much progress.”

I eat only a banana as I wait for the text. We’d hoped for 8am. I put on the longer brace sleeves I’d been given on Wednesday with my ExoSyms, so I am ready to just add the knee sections when we get there. At 9am, I get the text: they’re here. 

At the clinic, my knee sections are sitting on the counter in the room with the long parallel bars. They seem really big.

Before we put them on, I let Ryan know that the additional adjustments he’d made to my right ExoSym the day before for burning in the heel were now causing painful pressure on the top of my foot. He takes my right shoe and relaces it, skipping the very bottom holes and adding a plastic lace guard to distribute the pressure of the laces across my foot. This does help, and we’re ready to go. 

The knee sections are quite complicated to attach. Ryan shoves them over/onto the knee cuff of the ExoSyms, carbon fiber scraping against carbon fiber. Then he tries to show me how to shove the two openings in the lower piece of the knee sections over the waiting rivets on the knee cuff just right, like latching Oshkosh overalls. “There, that’s what I made you,” he says, and we’re all relieved that everything seems to be in working order now. I fasten two Velcro straps around the back of both thighs and Ryan hooks two hamstring assist bands around the metal pieces at the back of the knee cuff.

Up I stand, between the bars. My right foot feels indescribably weird. My toes are pointing out to the right, torquing me into an alignment I’d never felt before. It’s very uncomfortable, with pressure in all sorts of places, like my foot is on crooked, like I’d been casted for a broken bone incorrectly and this wonky cast needs to be cut off pronto. Instead, I’m asked to walk in it. My brain is scrambling and I ask why my toes are pointing out, voice a bit high. Ryan tells me everything looks good; it’s just that I’m more typically aligned. And that I can move my foot so it’s not pointing outward, shift from the hip. Of course, right, I can move my own foot. With effort, I get my toes pointing in a more forwardly direction. Simultaneously, there’s all sorts of sensations going on around my thighs. Rolling movements? But firm, especially around the back. Ryan had told me that the knee sections would give me more proprioception (body awareness) and stability. I hadn’t really understood how. I wasn’t prepared for everything to feel so weird. As I step, the cuff across the front of the thigh and the straps around the back put pressure into my leg at different points–constant feedback.

It takes a much shorter time than I was expecting for my brain to stop interpreting my right leg as #$@&!. My left side feels pretty good! Though it still doesn’t do as well as the right because the left is my weaker side. I wish my right side could feel as happy as my left. I quickly adjust to whatever is happening to my thighs and realize–I like it. It’s like a firm hug and a massage at once. I’m relieved that the added weight doesn’t feel “too heavy,” and I think in part it’s because I have two devices instead of one. With one, I’m sure the Exo side must feel weighed down in comparison.

Jared comes in for training and Ryan tells him before leaving that I walked with no hands yesterday.

“Can I see your new skills?” Jared asks.

I walk without using the bars for a few steps to show him my progress.

His response? “Are you using your squish?”

“Probably not,” I admit.

“I didn’t think so.”

So much for my new “skills.” Learning to walk in a new way is like learning to write in cursive after painstakingly getting the hang of printing. Smoothly connecting all the letters–all that processing needs to happen so quickly in order to make the word you want. 

I walk up and down between the bars, and Jared makes me switch to walking backward pretty quickly, to work more on the hamstrings. Then he brings in a large red gymnastics-type block for me to push out into the gym, on my toes, hips forward. Down and back the length of the gym. He tells me we’re going to practice stairs, which means I need to walk over there. After a few steps, he gives me one pole. It’s his way of “tricking” me into trying more no-hands walking, sneaking it up on my subconscious rather than telling me: “Try to walk to the stairs without poles.”

The best moment I have all week comes next. This is the moment I really know these devices are doing something for me, even now when I’m not strong enough to use them properly. I’m standing in the gym–freestanding, nothing near me to grab–and my muscles tighten up as they do, knees bend. I am now off balance and pitch forward toward the floor. I think, here it finally comes, my first fall. This will be a great first fall because I’ll just tip right over, nice and easy. But I don’t. I hang there, more bent at the waist than I ever remember being without falling. 

“You okay?” Jared asks mildly from somewhere above me.

“Yeah?” I say, disbelieving even as I successfully straighten up. What just happened? How am I still up here and not down there? How are they doing that?

We work at a set of practice stairs. One is a shallow set and across the landing and down the other side is a standard set. I muscle my way up, using the railing on one side and the wall on the other. There is a technique to learn for going down, though. With no ankle flexion, I have to position one foot with the ball and toes off the step, and step down with the other, ideally landing with that foot halfway off the next step. Meanwhile, the foot that was halfway off the first step has tilted off of it and is swinging through, ready to land correctly on the next one down. I absolutely understand the logic and can picture it in my mind. But. Short legs and spasticity do not lend themselves to stairs in the first place. For me, it’s more like plonk the foot down, position it correctly after two or three tries, plonk the other foot down…

Up again. Then down the standard set. Then up, and down the shallow set backward. Then up, and down backward. “Look up,” Jared prompts. Step. “Look up.” Step. “Look up.” Up and down again and again. With rests on a giant tire a couple times. He doesn’t tell me “Do ten,” but instead tells me, “Let’s take a break,” based on my body language. He’s figuring out how to adjust his approach just in time for our work together to be over. Five sessions isn’t a lot.

We go back to the weight lifting frame for more balance work. On the balance board, I cannot take both hands away from the bars. Jared asks if we’ve done the belt yet. I’m delighted to get another chance to put on the belt with the pole down my back. Still cannot take my hands away. I suggest getting off the balance board and just standing on the small block it’s on. Jared assents, but it’s a no go. “Look up,” Jared says. “Squeeze your buns.” He reminds me to squeeze my buns every time I feel unstable and start to crouch and collapse inward. It does help me straighten up and get my center of gravity back where it’s supposed to be. Again he wonders if it’s fear, though hastens to acknowledge that fear is real. I know there’s a psychological element at play. I tell him that I can stand in my ExoSyms and raise my arms above my head when I’m alone in the hotel room. He turns his back so no one is watching me, but of course it’s not the same, and I still can’t let go of the bars with both hands. Below you’ll find a series of clips, from the first near-panic moments of walking through the balance practice.

I push the red block up and down the gym one more time. Jared says it was nice working with me and thanks me for putting in good effort (or something like that). He realizes after a few days of working with me that I “do a lot of my work on the inside.” Probably in reference to my unexpected crying moment. 

My last training session is over. We didn’t do as much today, my only day with knee sections.

Back at the hotel, we eat lunch. I don’t get a good nap, but rest with ice on my back. As I get ready to go back to the clinic for another solo session, I time myself. It takes a full ten minutes to put all four pieces and shoes on.

At the clinic, I am in the same room as the day before, with the short parallel bars. I ask for a mirror, and Ryan rolls one in. The mirror will help me know whether or not I’m successfully combating my hip drop. Perceptions are definitely faulty. One day this week when Jared was trying to get me to maintain level hips while on the balance board, I did my squish, held myself as level as I could, and asked, “Am I level?” Jared shook his head, came over, and moved my hips into a level position. Oh. I was way off. What’s more, I couldn’t re-create the proper posture on my next try, and Jared ended up bringing over a mirror.

Today, Ryan tells me to do some laps with two, one, and no hands. Some “fast,” and some slower, with concentration. He tells me to put all my weight on the standing leg and swing the other through, especially on the left. At least, that’s what I get out of his directions as he speeds away to meet other patients.

I tuck my shirt into my shorts, so I can see my hips better, and see when I tighten my core. Up and back six steps. Fast, slow. Different hands. Try to swing my leg forward without cheating by swinging out to the side and around. I explore balance. Focus on using my core properly to help bring the leg through, try to keep my squish, and squish in time with my steps. As I practice, I think that maybe Jared was having me do a lot that was simply too advanced, or that I wasn’t able to synthesize and apply fast enough. I start to understand better today what he wanted from me two days ago. Five days, ten hours really, is such a small amount of time to learn so much. I need much more repetition and reteaching of key concepts. 

I continue to work, getting to know my devices, which after all, I’ve only had in their complete form for a handful of hours.

Then it’s time to take them off. Ryan shines them up for me. Gives me a stack of spare heel lifts for my shoes and several sets of hamstring assist bands. He shows me how to screw them into my devices in case one breaks. Ryan also removes the inner hamstring assist bands, leaving the outer ones. He will let me know when he thinks I’m strong enough to use both bands, based on the videos I send.

We go to his office for a bit of a debrief. I tell him about the lingering pain in the right foot. He says he can take the arch back down a little to relieve the pressure on top, but he thinks it will settle over time. I can always send it for adjustment if it’s needed. I decide to go with Ryan’s assessment and not make any further adjustments right now.

Ryan tells me this process will take patience and commitment, which I have shown a lot of this week. He reiterates that this is a partnership, and that I need to make sure my physical therapist gets in touch with him.

After I put my forest green pin in the world map, training week is over. Whew. Now I’m just supposed to wear them every day for the rest of my life. No big.

I have a big balance check before I even make it out of the lobby. Still so far to go to be comfortable just with walking. 

Still, I made it through, and I do know it’s going to get so much better. Right now, I literally can’t imagine what it will feel like to walk easily, with a steady gait without poles. But I believe it will happen one day.

Anyone who knows me well would agree that I am cautious, do not take any physical risks, am rather skeptical in general, and pass judgments and make assumptions that are incorrect on a regular basis. These traits do not amount to the best recipe for personal growth. So, good job, me. Good job for trying hard things.