Tag: meditation

How to Be a Functional Adult When Your Mind and Body Don’t Want To

danielleshanti

Hello, my name is Danielle, and I am a YouTube addict. I love watching people declutter and organize their closets, turning chaos into something functional and nice. I love watching people mow and trim overgrown yards and sidewalks, turning chaos into something functional and nice. I watch people restore furniture and renovate houses and make food, I watch the Vlogbrothers, I watch people with disabilities share their lives, I watch dance and music. And I do it all sitting down. Or lying down. My mind and body are at rest and there are stories and journeys unlimited to jump into and I could stay there in that cocoon forever and ever amen.

Sometimes I remind myself as I click on one more video that this is my one life. Is this how I want to spend it? Is this video enriching my life in any way beyond passing enjoyment? I know it’s time to close my laptop and do other things. But it’s so hard. I know it’s not just me. I know that it’s a worldwide cultural phenomenon, with the internet in our hands, our heads bent to our phones, scrolling and scrolling and scrolling. I’ve been very careful to not join Instagram or tiktok or whatever else is out there because Facebook and YouTube are already too much. They are almost magical places where we can create our own bubbles of people who love what we love and we can immediately find a site or a video on anything that piques our interest. This kind of internet was unfathomable to me in 2005.

I think about 2005 me sometimes, and not just because I was in my twenties and had more energy and less pain. In 2005, I walked from my apartment to the public library and I logged on to a computer to check my email. I checked my beloved message boards where fans of figure skating and Broadway musicals gathered. Then I logged off and checked out books. Paper ones. Or movies on disc, or CDs! That was the time of listening to every Beatles album and finally hearing Leonard Bernstein’s MASS. Oh, my heart. The way the internet and our lives have changed since then makes my head spin and my heart ache. The internet has been a tool for so much good, for connecting people and making political movements like #metoo and #BlackLivesMatter, and so many others, globally accessible. Accessibility is one of the greatest positives of the internet. I watched Joan Baez dance on her 80th birthday! I saw the original cast of Ragtime share their memories and the cast of The West Wing come together to play trivia and encourage people to vote. These moments brought me joy. 

But my daily consumption of YouTube and Facebook does not typically make my heart sing. 2005 me could not conceive of YouTube and Facebook. 2005 me was reading, journaling, listening to music, and going outside, for goodness’ sake. (And watching a lot of TV and movies, too. Let’s not be too rose-colored about the past.) 

The title of this post is utterly laughable because I don’t know how to be a functional adult when my mind and body don’t want to. We all know what we should do. Of course we know. I know that I should go for a walk and do my PT and eat less sugar and more vegetables and put my phone down and do deep breathing. I have tried to curb my internet addiction. The truth is, I do not want to give up Facebook and YouTube entirely because there is real value in them for me. 

I have tried no phones in bed, no screen time after 9pm, only allowing myself access on one or two days a week, or only after 5pm, or for only thirty minutes a day. All of these self-imposed limits work for a while and then I gradually let them slip away.

Now that I am legitimately middle-aged, only working a few hours a week, and finally back on SSDI (hooray!), I have the kind of time so many people dream of. Everyone out there who’s working full time and raising kids, they wish for some free time to work on labors of love or to rest and read.

But what am I doing with my one life? I am existing. I am tired. Sometimes I take a shower and sometimes I don’t. Some days I cook and do laundry and some days I don’t. Some days I read and listen to music. Some days I don’t. I am not alone in this, and my company isn’t only others with disabilities.

When did we become a society that makes half-serious jokes about earning a sticker for putting on pants? When did “adult” become a verb? Why does everything feel so hard? Not just for those of us with disabilities, but for so many?

I did not create this sticker. I found it here: https://bigmoods.com/products/i-put-on-pants-today-trophy-sticker

I don’t think social media is helping, with its ocean of “morning routines” and “night routines” and “how to be productive” videos. There is literally–and this is the correct use of the word–only one task I consistently complete every day of my life. I brush my teeth. That is it, the single task that is my daily routine. I can almost add one more thing to that list. Since adopting Maddie, I have fed her and scooped her litter box. Because she, through no choice of her own, is dependent on our care, and she needs and deserves food and water and pleasant conditions in which to carry out her bodily functions, I have met those needs out of love and respect for her. But I have not done these tasks every day. On days when I’ve been injured or my knees have been hurting, my husband has taken over. (We need to help out my body by raising the litter boxes off the floor, but we haven’t gotten there yet). 

Meeting the most basic of bodily needs, my own and my cat’s, seems to be what I am capable of. Will this ever get better, or continue to slowly get worse? Even when I successfully avoid endless scrolling, it doesn’t mean I have the energy to complete the tasks required in order for us to stay clothed, and fed, with a clean-enough body and a clean-enough home. 

It’s not that I feel I must be productive. Let’s continue to dispel the idea that one’s productivity is tied to their value as a person. It’s not productivity that I want, but to live a good life, to not feel that I’ve squandered precious time, to live with care and gratitude, to be present, and to nourish and love myself and others.

I love making lists. Yes, I am absolutely one of those people who will write something on the list that I have already completed, just so that I can cross it off. The items on the list might be as simple as taking my vitamins or journaling. Lists are not only for “chores,” but also for self-care. There are so many little things to remember to do every day, even things that I genuinely want to do, or to incorporate into my life, that I just don’t seem to be able to make stick.

My latest method has been the kanban board. This method of project management is not new; there are lots of versions out there, and it can be as simple or as complex as needed. Mine is simply three columns: To Do, Doing, Done. I found a magnetic whiteboard and ordered some magnetic dry-erase rectangles to use in place of sticky notes, and I put it up right next to my desk. The idea was to have the visual there for me, and to have an interactive component (moving the magnets across the columns).

I liked it for a while, but I’ve learned that it works well for some things and not for others. I put things that I want to become part of my everyday life in the To Do column: vitamins, PT, meditation, tapping. (I set up my environment so that I have the time and space to do them, and yet…) I added in other tasks as they came up, like laundry or vacuuming or making phone calls. Then, after the billionth time I kicked some of the clutter under my desk, I added “Hang art on the walls,” and “list XYZ on Buy Nothing.”  There are big and little, short- and long-term to dos, like taking old medication to the drop-box at the pharmacy and getting caught up with printing photos and putting them into albums. Or writing a blog post and updating a website. Soon the To Do column was full and daily goals were next to long-term, procrastinator-extraordinaire projects. I stopped moving the magnets over and went back to paper lists. I look at the board guiltily. I still have not updated my website. 

Having things that I theoretically want to do mixed with things I’m actively avoiding, well, that didn’t work. Or was it the smaller daily goals mixed with the big long-term projects that didn’t work for my brain? A week ago, I got fed up with myself wasting time on YouTube, as I sat right next to my kanban board that was reminding me that I still hadn’t done any stretching or meditating that day.

These aren’t all chores, I reminded myself. These are actions my body and my mind need, and I can’t expect to ever feel any different if I don’t at least try to be consistent with at least some of them. I needed this shift in my perspective. So I created something like a kanban board, but with self-care as its only focus. True tasks, different from self-care, will go on short-term and long-term paper lists somewhere else. I find pleasure in writing with a pencil on paper, and crossing items off lists, so I’m going to keep doing that.

I’d tell you that the picture below is the rough prototype, but I’ve never been into crafting, and I’m trying to let go of perfectionism, so here we have the new system, laid right atop the old one.

The three sections are Body, Mind, and Soul. I want to stretch and do breathing and tapping and meditation. I want to journal and listen to music and put my bare feet in the grass. But often I do none of these things. I’ve learned so many kinds of mindful breathing! Just do one. So I’m trying to see if I can get myself to do just one thing (or two?) for each part of myself each day. 

If I simultaneously take the pressure off myself to do all the things every day, and also provide the visual reminder–Why, yes it would be nice to do some journaling today–maybe I’ll be more likely to do some of the things, some of the time?

Furthermore, I have once again reinstated the “YouTube only on Fridays” rule, and the “For the love of sanity, don’t click on Facebook every hour of every day” rule. We’ll see how long it works this time. Scratch that, it sounds a bit self-defeating. What I mean is “Good job, me, for setting realistic goals, for switching things up, and for trying again.”

Trying again is all we’ve got really.

Danielle Visits Physical Medicine & Rehabilitation (PMR)

danielleshanti

On April 4th, I had my first ever PMR appointment. Quick recap: Once upon a time, I made an appointment for myself at the adult clinic at UCLA Center for Cerebral Palsy, just to see what it was like, and if they had a more knowledgeable perspective than my primary care doctor. The CP clinic referred me to UC Davis sports medicine. Sports medicine doc tried a couple injections and when those did nothing referred me to pain management. Pain management tried a couple medications, and when those did nothing, referred me to PMR. I’m not angry or surprised by any of this (mostly); I’m just pursuing various care options as an adult with CP who is experiencing (expected but not able to be fully understood until it happens to you) decline in function and increase in pain.

The excellent thing about the PMR appointment was that the experienced doctor, Dr. S, came in with the intern/fellow/resident/whoever the young doc, Dr. W, was and the medical student, rather than the young’uns doing everything and then reporting to Dr. S outside the room before they all came back to me. It’s much better having the experienced one there from the get-go. It feels more productive having them all there teaching/learning/discussing in the room. It also just feels better to the patient when there’s a team of people who are trying to help you and taking you seriously and playing detective. They asked about my celiac disease and my throat pain and my arm pain in addition to CP stuff because they were trying to rule out other causes of my fatigue and pain. They could see the EMGs, neurologist notes, etc. 

When they transitioned to the CP side of things, they watched me walk up and down the hallway with and without poles. Most doctors don’t do this, and I think it’s weird. If a sitting-down patient tells you they have CP and various chronic pains, don’t you think you should ask that patient to walk more than zero to four steps? I felt it was a thorough appointment, that young Dr. W was on top of things as far as actually looking into my history, and that the medical student probably learned a lot. Dr. S said that the labral tear/impingement probably isn’t causing my pain, and that my hip issues on the right are most likely coming from the iliopsoas lengthening procedure done in 1989: “​​The pain could be due to the prior history of iliopsoas release as they have to cut part of the tendon to elongate it. So the pain could be coming from the tendon or myotendinous junction. The restricted range of motion in the hips with tonic tension on that structure when standing could be increasing the pain. Unfortunately, there is not a whole lot that can be done if that is the source of hip pain.”

As far as the pain and arthritis in my lumbar spine, my pelvis is tilted in a way that accentuates the lumbar curve, adding more pressure there, and my gait has always exacerbated the area. The doctors were rather taken aback by the pain management doctor’s offered options of a baclofen pump and nerve ablation (which I had already decided against). Dr. S’s opinion is that if the tizanidine (muscle relaxant) did nothing, then medicating for spasticity (baclofen) isn’t going to help me. For doctors who understand the range of CP, my spasticity is not extreme, and relaxants would only increase my fatigue. I could pursue an injection in my back. (Young Dr. W cut in with this, and Dr. S didn’t disagree.) The overall suggestion Dr. S had for my back was to “modify activity,” meaning “do things in a way that hurts less.” I probably could have come away with a physical therapy referral, but talked about how much PT I’ve already had and what I’d been assigned in my home programs. Water therapy is a popular idea, since being on land hurts, but it’s not readily available around here. 

I asked Dr. S how to work on my tight hip flexors in a way that doesn’t aggravate the rest of what’s going on in my hip. He said, “If it hurts, don’t do it.” I felt relief and validation then. The tough truth is, I’m in the least amount of pain when I am least active. When I move my body, the hip and the back flare up because the way I move hurts those places. Of course I know that exercise is the best way to keep my body and my heart and my brain healthy, so I’m not going to become completely sedentary. It’s just good to hear that, yes, these exercises that have been given to over and over may be causing damage and that, yes, it really is sometimes damn near impossible to exercise one area without hurting another. 

When the pop in my hip led to a labral tear/hip impingement diagnosis, and more pain, I held to this idea that this new condition, and new pain, could be helped. But these doctors have said that my pain isn’t coming from the tear and impingement. When I leaned over a bit sideways to pick up something off the floor and hurt my back more than I ever had, I held to this idea that this new condition, and new pain, could be helped. But these doctors have said that I have facet arthropathy and age-related degeneration, and that the pain isn’t from an acute injury. I don’t know why my body hasn’t returned to its prior state, the way it was before these identifiable incidents. It’s like the new pains alerted my brain to these areas in a new way, and I haven’t been able to calm down my hypersensitive nervous system to the previous levels of pain. If true, this is something I could use The Gupta Program for. I have fallen off the Gupta wagon, however–except for meditation–and it’s exhausting to think about getting back to it when seven months of trying did not help my pain. (It’s “a six month program,” and some people use it for several years before they start feeling better. I imagine the ones that try it for years and don’t feel better aren’t writing about it in the online group forum.)   

At least I can accept now that this hip and back pain is here to stay and that it’s up to me to manage it the best I can. Acceptance and surrender, right? Just like Gupta says. Except that complete acceptance remains elusive. I still feel that it would be nice if OTC medication, heat, ice, etc. actually helped. I just want a little help. Sometimes I feel that if I could have a minute or two of true relief, it would help me be able to handle it the rest of the time.     

When I returned home from my PMR appointment, I signed in to a free UC Davis Health webinar on “pain and wellness.” Because why not?

As I watched this webinar and listened to an expert promote the benefits of (get ready to be shocked!) meditation, healthy diet, and regular exercise…I just felt so exhausted. He is talking to people who, most likely, were once able-bodied. The amount of activity that’s advised–cardio, strength training– I’m just so tired. I already understand the benefits of exercise and vegetables. Everyone does, but that doesn’t mean we follow through. Studies show meditation is an effective method for pain relief. I know this. It’s just not simple and straightforward. It’s not as if I meditate and feel better, end of story.

Healthy diet, exercise, meditation. I DID DO these things, to the extent of my ability, for years. I walked, I did adapted yoga and pilates. I handcycled and did seated arm-workouts. I tried. I meditate. And my body has continued, step by step, part by part, to decline.

As I watched the webinar, I felt like the doctors were not talking to me, but only to the once-able-bodied audience, who have the potential to return to that state. Most of me feels that I am stuck here and that it’s just going to get worse. And that’s not a great headspace to be in. As Gupta says, “The mind believes what you think about your body and carries it out as instructions.” This is why we are supposed to interrupt negative thoughts and replace them with a hug for our worried part, basically. 

I don’t know how to apply what I know and what I’ve learned to my own life, other than all the ways I’ve already tried. And I know that I’m not so special that nothing will work; I’m not so far outside of regular human experience. I can still apply The Gupta Program to myself, and mindfulness meditation should still be able to me too. I am just tired of trying. And I’m tired of trying to accept and surrender. I am tired of “discomfort.” (One of the ways to help chronic pain is to “reframe” it. And while I mock this, I also understand that it can work.)

One of the ways I am struggling is that it isn’t just cerebral palsy that I’m dealing with. I do think I can succeed at acceptance and surrender there, and live a good life with the ever-present “discomfort.” It’s the other parts, the throat pain and the forearms, the neck and shoulders, the constantness of it all, that is hard for me to understand and to accept. Feeling like you have strep throat every second for years isn’t healthy and normal. I want there to be a reason for it, even if it is my hypersensitive nervous system that I haven’t yet successfully calmed. But no one can tell me for sure, so I am just here, flailing in the dark, tired and struggling. 

I didn’t plan to end on such a low note. But it’s not my job to spin my life into some inspirational lesson learned, now is it? I feel my purpose here is to document my experiences, to not feel alone and to let others know they’re not alone either. So, here I am with my discomfort, reaching out to you and yours.

So How Much Therapy Do I Need?

danielleshanti

Content Warning: this post contains descriptions and mentions of animal deaths, the Holocaust/genocide and WWII, and school shootings. Brains are complicated things. Please don’t read about my brain if it will upset yours. 

I have dreams about my childhood home all the time. I lived in that house from the age of four to nineteen (and a half), and then for smaller periods of time in my twenties. 

The house was on five acres, and though we were in no way a true working farm, we had an assortment of cats, dogs, some sheep and chickens, and for a while, turkeys, ducks, and geese. Just for fun. My dad enjoys eating lamb (though he did not slaughter the sheep himself). We always had fresh eggs, and we hatched chicks in an incubator on our kitchen counter in the spring. We had frequent lessons on the circle of life when lambs or chicks didn’t make it, and when coyotes/hawks/raccoons disappeared various animals and perhaps left a trail of feathers behind. Two of my very own kittens disappeared without a trace, and I am still sad about it. Why didn’t we let the cats inside at night, you ask? Because animals live outside, of course. 

Often, my childhood-home dreams involve wildfire and needing to evacuate, or some other kind of disaster or intrusion that seems perfectly normal in dreamworld. Almost without fail, there are small children or animals who need help. 

In last night’s dream, I was showing an incubator full of fluffy chicks to a girl about five years old. But upon a closer look, there were a couple birds in there that didn’t belong. A skinny little black thing whose feathers reminded me of a shrimp, and some other kind of songbird. I wondered how we’d get the wild birds out of the incubator without them flying around the house. I got a cardboard box ready, and when Dad opened the incubator, I pointed out the skinny one that was definitely not a baby chicken. He was able to pick it up, and I noticed it now had blue painter’s tape wrapped around its body. I asked Dad if he wanted help removing the tape and followed him to the front door. I stood in the open doorway while he leaned over the porch railing, and though his body blocked my view, I could see feathers falling. I realized way more feathers were dropping than if I had helped, and that the bird was probably now very hurt. My mouth opened in a silent cry, and I made sure the girl inside couldn’t see. My grief felt overwhelming, and I woke up.

I have realized in my adulthood that there were small-T traumas in my growing up with all those animals, experiences I had that stayed with me. Experiences that are not the norm for kids who didn’t grow up in the country. My siblings also had these experiences, but don’t seem to be affected the same way I was. 

My dad is a doctor and an anatomist, and as both a scientist and a man of religious faith, perhaps he has a different view of life, death, and suffering than I have.

He wanted us to see and learn and experience all that the natural world has to teach us. He delighted in using the chicken bones on his dinner plate to illustrate the way joints moved. He invited us to watch him slaughter the Thanksgiving turkey so that we could see the way the body moved even after the head was cut off. I watched him snap the neck of a tiny chick who was not going to make it. And perhaps most gruesome, one night he called us out onto the porch to show us something. There, by our front door, lay a deceased lamb whose whole underside had been eaten, probably by a coyote. He wanted us to see the way the predator ate the warm insides and left the rest of the body intact. “On the porch?” I asked, confused and staring. He chuckled and said, no, that he’d brought the body up to the house. My dad does not remember this, but I can’t seem to forget it.

I have snapshot memories of these three events: the dancing turkey, the dying chick, and the dead, eviscerated lamb. I have come to the conclusion that it was not appropriate for me to see these things. I’m not sure that it would even cross my parents’ minds to shield me from these parts of country life. Maybe they warned me and asked me if I wanted to see, and because my older siblings did, I did too. Maybe there was no warning. I don’t remember. I’m sure many young children could experience these events and not have any lasting negative effects. All three of my siblings grew up to earn master’s degrees in something sciencey. One even became a doctor like my dad. I majored in English and history.

I remember the moment that my kid-brain integrated the information that the Holocaust and the US dropping atomic bombs on Japan happened in the same war. I was in the car with my mom. Apparently, we were talking about World War II. I felt it like a gut punch. How could these horrifying events happen one right after the other? How could groups of people commit these atrocities against other groups of people intentionally? It was probably that moment that turned me into a history major.

There were two classes dedicated solely to the Holocaust at my university, and I took both of them. On the first day of the first class, we discussed the meaning of the word “genocide.” The term was coined in 1944 by Polish lawyer Raphäel Lemkin and genocide was recognized as a crime under international law in 1946. Lemkin created the term in response to Nazi policies, but also as a way to define previous targeted actions against other groups of people. I knew about the Rwandan genocide against the Tutsi in the 1990s, but I’d had no idea there had been so many others. We in the United States, for example, have a hard time recognizing the genocide of the Native Americans. I never heard it talked about in school using those terms, though books that call it what it is have been around since at least the 1990s. I have several memories of my Holocaust classes as well. One is of an old man coming slowly down the steps of the lecture hall to take a seat near the front. My professor introduced him to the class as a Holocaust survivor who came to sit in on the class whenever he liked. The other memory is of the professor reading aloud the poem “Death Fugue,” by Paul Celan. I still feel compelled, twenty years later, to read Holocaust memoirs and stories set during the second world war. 

I know there are so many more historical events that, if I knew about them, I would feel a compulsion to learn more, to keep reading, horrified. It’s like I have to keep looking, keep learning. If we look away, if we ignore it, we forget. We forget what we’ve done and what we’re capable of. And we can’t do that, because we have to change.

I was watching a documentary (yes, it was about indigenous genocide), and the narrator mentioned a good friend who died in a plane crash, whom he still misses. That the maker of this film mentioned his friend struck me, and I looked her up. The wikipedia article about the commuter flight she was on included a video simulation of the crash, that stopped a second before the plane hit the ground. I read the article through and clicked on the simulation. And then I clicked it again. And again. And I imagined the people on board, and the mistakes the pilot made. And now it’s a tragedy I carry, in my catalog of tragedies. 

In 2018, when a young man in terrible need of help went to Marjory Stoneman Douglas High School and killed seventeen people, I felt compelled to read about every other school shooting I’ve been alive for. I worked at a school then, and yes, we helped the first graders and kindergarteners when we held shelter-in-place drills. I developed shingles after that shooting, and the doctor who diagnosed me at urgent care chuckled, said I needed to work on my stress, and left the room. In May 2022, when another young man in great need killed twenty-one people at an elementary school in Texas, I again felt compelled to read about all the school shootings. But this time, I did not. It doesn’t help you, I told myself. It doesn’t change anything. I’m trying not to dive head first into every horrible thing that happens anymore. I try not to read the news, because we only publish horrible things. 

Almost every day since I started The Gupta Program last July, I do a “Soften and Flow” meditation, often twice a day. During this meditation, I’m supposed to focus on an area of tension. That tension is trapped energy or “trapped emotion” that needs to soften, and flow through the body instead of being stuck. The idea that I have emotion trapped in my jaw and neck and shoulders simultaneously sounds incredibly hokey and makes perfect sense to me. 

Recently, during my Soften and Flow meditation, I lay there, and I told my tension to soften and flow; I told my body it was okay to let go. I told myself that I could let go. I could let those childhood memories that bothered me go and keep all the good ones; I could let my childhood house go because we don’t live there anymore. And I told myself I could let the Holocaust go. It’s over. It’s long over, and I can’t change it. All that gut-wrenching, world-altering tragedy has happened; we will feel the effects of it forever. And I’m allowed to let it go. I don’t have to carry it. It doesn’t help me to carry it and it doesn’t help the victims for me to carry it. These are lovely, new ideas to my subconscious, and she doesn’t quite believe me yet, but I’m working on it.

When I was in seventh grade, a teacher informed me and my best friend that we didn’t have to save the world. I think that’s still the crux of what I’m struggling with. How can I live my life and be happy when there’s so much horrible stuff happening and so much to be done? But I cannot be AOC, even though the world needs thousands more like her. 

In fact, I don’t have the energy or ability to be much of any kind of activist right now. But it is okay that I am just myself. I am allowed to experience moments of peace and contentment. I am allowed to feel joyful even while tragedy is happening at this very second. My happiness doesn’t ignore someone’s sorrow or pain. The world will always contain multitudes of simultaneous joy and tragedy. I and my highly sensitive nervous system have to find a way to reconcile that unconscionable truth. I will try to remember that in the face of our current overwhelmingly dire circumstances, our world full of fear and pain, that joy is rebellious action.

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.