Recovery (IV)

A new struggle

By September, the first onslaught of symptoms had become part of my everyday life and lost their magic. I started to take the recovery and improved health for granted, and progressively forgot how it felt when my condition was excruciating, although it was still quite terrible. There was a new problem. In August I was so absorbed on the victory and the intensity of the recovery (ya know, it's the holy grail), that I thought I would recover in 2 months at most, hopefully before the Fall semester started. However, I reached the end of September and I was nowhere near the end. The recovery was indeed systematic, but it was taking so long and I was still dealing with wide nerve irritability, body stiffness, fatigue among other things (all decreasing progressively, but so slow!). I got progressively surprised that so many things I always assumed were normal were actually screwed and would take long to repair. Initially overconfident, the persistence of the syndrome humbled me down once again, and I found myself lifting for dear life week after week without an end in sight. Further, I was so absorbed into trying to figure out my problem that I had forgotten about my PhD research, and I had to start it soon. I delayed it month after month, waiting for me to be fully recovered to start, but eventually I realized I'd have to do research while my body was still damaged. I knew I wouldn't be able to focus much on research while I was still struggling under the neuropathy, so my approach changed to trying to survive the PhD, trying to barely keep up with my responsibilities, for however long this whole thing took.

I needed still quite a lot of rest, and the neuropathy and brainfog made working or focusing on anything very difficult (I'd say almost impossible), so I skipped classes and meetings, delayed things whenever possible and did my tasks just before the deadlines, missing some even. I was far from the ideal PhD student. Since the disease is invisible (and I didn't tell anyone about it) I gave an image of being irresponsible and lazy which gave me some problems. It was once again this problem those with the syndrome know very well, that on top of the illness itself, some people (even doctors!) think we don't look bad at all, that we are exaggerating or we're just lazy and not trying hard enough. None knew about the hole I was escaping from or what I was doing, and none knew my situation was severe just some months ago. But there was no way to explain this to anyone, and the PhD doesn't forgive, so I had to suck it up and just struggle trying to keep up with the program. I started to feel anxious, exhausted and trapped in this juggling of the PhD and the recovery which took forever. Trying to work like this felt like working with an open wound, and I couldn't compete with hard working smart healthy people, who were already into the academia race while I was stuck recovering. My start in theoretical physics was a disappointment, to say the least. I got depressed about my frustrated career, thinking of all those years I lost because of this evil illness. There was almost nobody I could tell this to. I felt alone in this struggle.

There was another problem, that the trick doesn't make any sense whatsoever at a first glance, it looks completely ridiculous with all those face grins and gags, so nobody would attempt to do it, specially coming from a random dude (it was a total joke that something so powerful could look so ridiculous!). There's no way to a priori know that it works so well. At the beginning I was really excited and tried to spread this idea, even to very smart people in academia, and see if it worked in someone else. I thought it'd be unthinkable that these extreme symptoms could only be felt in one body. But I found none really cared about it. I commented about it on the internet, and responses were pretty underwhelming. I showed to some people how to do bodyweight squats in this style (twisted squats driven by involuntary contractions) but it wasn't outwardly impressive either, and none would do it.

Finally, I was lurking on support groups and people were struggling with it just as severely as I had months earlier. I asked myself why am I overcoming this and other people are suffering? It's not fair! I wondered if this strategy also worked for others as well as it did for me, so I went to a support group I was in and tried to say that the condition was not hopeless, but I was shunned, the reaction was very bad. The rules prohibited sharing any kind of medical advice and false hope, and I realized that indeed it was a sensitive thing that would be hard to communicate, so I had to shut up and apologize. I started to feel alienated from the support groups I was in. Meanwhile, I read stories of people having their lives destroyed by this condition, people just like me, some even deciding to end it all. I felt frustrated that I couldn't do anything to help, I had already tried. I started to feel a lot of moral heaviness which compounded with the ongoing unforgiving PhD pressure. My mental health was hit quite heavily because of these, and sadly it’s something that has dragged on me since then.

 

The Muscular Anatomy Reconstruction

You get the gist of how this works. I just repeat the same routine over and over again, doing the trick in each set. It's always a bit tricky, the muscles will spasm and move in weird unpredictable ways, and the muscles hit are also unpredictable, but always with extreme precision. Over weeks and months, the muscles that activate show a sequence. For example a lumbar spinal muscle can be trained for 3 weeks, then suddenly a thoracic spinal muscle activates and is trained 3 weeks, then another at the neck activates, and so on on. Same for all muscles in general. This progressively reveals a very precise muscular structure in the anatomy, in which some muscles have to be stabilized first before others fire. 

By the end of September, the 2nd spinal layer contractions reached the thorax, and also the muscles at the shoulders/arms and thighs activated for the first time. Coinciding with that, a new kind of extreme symptoms appeared and over a short span (from mid-September to the end of November) changed my body more visibly. They involved body wide skin nerve releases with very strong sweating events, skin sensitivity changes, and suddenly increased blood circulation which over many weeks somewhat changed the tonality of my skin. The fact that skin nerves were also affected by the muscle tension was really unexpected, although in retrospective it makes sense since the muscles pull on the fascia which is tied to the fat and skin. These surreal effects didn't help and I was even doubting whether all of this was real, or whether I was mentally sane... I got used to even these events by necessity, just being numb to the whole thing, acting as if nothing spectacular was happening.

Meanwhile I got plagued by some dilemmas. One was that my whole syndrome had been reduced to a lifting trick that was so easy to spam (if you know what to do), that I thought it was nothing special. As I said earlier, I showed it to some people and none was really surprised, it really doesn't look like anything spectacular. One just lets the body to relax (as in be erratic, letting all degrees of freedom free) just before a lift, the tensions will rearrange themselves (with some stimulus aid), when it's done just stabilize the thoracic pressure and then push as heavy as you can. After the session, the muscle starts growing and everything gets decompressed automatically while you just go on your day. After 2 days you come to the gym and hit it again. Repeat as many times as needed. There is nothing to know, nothing about muscles, nor about nerves, nor genes, POTS, dysautonomia, or anything! There's no posture to keep, stretches to do, special pillows or devices to wear, no diet or medication changes, nor was it a complex art that takes years to learn and master. Just simple, raw muscular decompression. I wondered, could it be that the entire medical establishment completely screwed up this problem?

By November I finished building up the 2nd spinal layer (going from the lumbar to the neck), and noticed a really interesting pattern: as I reached the neck, the contractions started to be felt simultaneously at the body peripheries, like the forearms, calves and neck/throat/hyoid, and after that, the hands, feet, and head muscles, all them being stabilized together (although at that time only a few muscles at each part were covered, not nearly all of them). In the gym, the hands started to do weird fingers poses like those ancient yoga ones (yoga mudras), and I'd have to lift using that grip (say with the index and thumb touching or pressing each other, and the other ones lifted up), which was really interesting. The mudra grips would be a constant feature from then on. However, just as I thought this was nearing the end, I felt once again a pull from the lumbar. I knew it was another spinal group to cover hip to head, which meant at least 2 more months of lifting like it had been for the previous 2 layers. That was overwhelming at the time because the thing would drag my PhD for longer. I thought I'd be done by when I came back from a travel to my country by January. However, this one turned out to take much, much longer, I wasn't nearly done after coming back to the US, and it ended up dragging well into 2022.

When 2022 came it had been 6 months of lifting, the next semester would start and again I was still not done, so I got very frustrated. It seemed absurd that even with this the recovery was taking so long, which shows how truly horrific this condition is. I hadn't realized how wrecked I really was, how abysmal the difference between normal people and my syndromic body was. It felt as if I had no structure whatsoever and was building myself up from nothing. Later on I started to feel a new kind of event when lifting, in which the press would be so strong at the neck that I'd hear a really strong sound at the inner ears and my vision would blackout, almost fainting. It would take a minute to fully recover my sense of orientation. I'd have bad cramps at the belly from the heavy pulls which would take a minute to recover, and sharp burns at my fingers sometimes. The increased pulling weight gave me calluses, they'd break and make my hands bleed. It was an all-out war against the syndrome.

Later in 2022 I had more time to observe to overall pattern in the activation of the muscles in this third layer. This layer was far more complete (apparently ultimate), which is why it didn't take just 2 months like the previous ones. As usual, in the spinal erectors, the muscles from the lumbar would activate first, and progressively, new erector muscles further up in the trunk would activate in the course of the months, each muscle taking 3 to 5 weeks to train until the next one was unlocked, all the way to the neck. The pattern I've seen so far in this layer, in order, is: Iliocostalis lumborum, Multifudus (?) (first layer), Longisimus thoracis, Longisimus cervicis, Semispinalis thoracis, Semispinalis cervicis, Spinalis thoracis, Spinalis cervicis, Semispinalis capitis (with both serratus posteriors), Multifudus (?) (second layer). In the legs and arms, just like before, first the bigger muscles at the thighs and upper arms would activate, and after some time, the forearm and calves muscles activate, both at roughly the same time. Finally, the stability would reach the feet and hands, at the same time as the neck and inner head muscles (like the hyoid, throat and skull muscles). It's an amazing pattern in which all the peripheries (hands, feet, head) are tied and stabilized together, in of course completely unpredictable patterns.

By now it was obvious what the fundamental problem of my syndrome was: I was born with an incomplete muscular structure, I guess by some yet unknown genetic defect, and that structure is so extremely intricate and unknown that it is conventionally impossible to restore (it is an actual serious physical problem! not anxiety or depression!!). In the absence of this structure, muscles all over the body are atrophied and strained, pressing over structures like nerves, glands, organs and blood vessels, creating an extremely wide arrange of issues (even autonomic, sensory and cognitive) that seem to be not muscular related at a first glance (such a sneaky disease!), especially since there's no way to "see" muscular strain in any test, nor is it visible from outside (and even if it is visible, like if the skin is pale or translucent, it's difficult to know if it's because of the syndrome or just the way you are). It was also clear why something as naively simple as fixing my pinched nerve at the neck was impossible. Since my entire spinal structure was atrophied, I had to build the whole structure from the hip and up, and it takes months, even more than a year of heavy (weird) lifting to actually decompress the stupid pinched nerve. No targeted light neck exercises or chin tucks or nerve glides would do anything about it.

I also had time to think better why this strategy worked so well in comparison to the conventional treatments for my case, but this explanation sadly needs some physics or mathematics background (warning, it may be totally wrong! This is just my broscience attempt). The mechanism for mechanical relaxation consists of "letting muscles rearrange their tensions on their own", which I think is an energy minimization (optimization) over the whole continuous spectrum of tension parameters all around the body, much like what is done in optimization techniques used in Machine Learning. The tension configuration will "flow down the energy potential" to an extremely specific configuration that minimizes the mechanical energy. It’s too an extremely fine tension arrangement to be obtained by human analysis and scans, I don’t think any amount of research, or any therapist could possibly decipher it. So the problem is infinitely complex from the perspective of combinatorics (figuring out analytically how each of the infinite muscular fibers have to contract to reverse an imbalance), but trivial from an optimization viewpoint. The body is always wanting to do this tension rearrangement just as much as a rock falls to the ground or the planets towards the Sun by gravity (that's Mechanics 101). No matter if the degrees of freedom are as monstruous as in the human body, they still have to follow this simple energy minimization principle, and this rule seems to apply regardless of the complexity of the anatomy. 

Now

Further into 2022, I finally felt better enough to do physics research, but it was still limited which was frustrating. I screwed it up in some courses at my program and I couldn't prevent feeling that my PhD was mediocre, that I was going to waste 2 years and I wouldn't recover on time to save it. I felt sad that what the initial victory was well in the past, the miracle had turned into an exhausting weekly routine, and now everything was struggle and frustration. The final layer of erector muscles also turned out to take a lot more time than I expected. The whole semester was spent building up the erectors from the lumbar to barely reaching the neck, so for a good while, despite lifting continuously, I felt like I was not resolving any of the debilitating issues I still had. Progress in the sensory issues stagnated since I didn't reach the head, the peripheral neuropathy was still strongly there (although a lot had been decompressed) and there was very little visible progress in the photos in comparison to the abrupt changes I could see at the beginning. Since the beginning I wanted to see a few effects, mainly flat feet correction, cheek rosacea (and blood pooling) correction, and ambitiously, a possible myopia correction. Also a fixing of the left body irritability and ribs subluxations. I knew most of these had to eventually be resolved, but that didn't happen in the last semester. I doubted myself whether I was doing the correct thing, it felt like I was flushing my career down the drain.

Now it's August and it's been a year since I started this recovery journey. Reaching this point inspires mixed feelings. On one side, after a lot of buildup, the contractions finally reached the peripheries (head, hands, feet) again after so long. This time tough, the reconstruction is much fuller than the first time it happened, as in all the muscles are being covered now, again in a specific order. I got to have the first of the effects I was looking for: a correction of long-distance vision. Although I've had visual symptoms since last August which did give a lot of clarity and focus to my vision, none of this really helped long vision. It's the first time I actually get improvements and I started to take my glasses off or forget them sometimes, but it's still far from a full correction, and I don't know whether one is possible. Looking at the body muscles, it really seems now like there's not that much left to cover. In the erector spinae, apparently there's only the iliocostalis thoracis, iliocostalis cervicis and longissimus capitis left, and there's not many peripherical muscles left to cover, either. Finally, I can see the light at the end of this struggle. On the other side, despite being one year in, the neuropathy is not fully healed and the electric radiation still feels debilitating. The physical and mental fatigue finally got to me. I feel completely drained, frustrated and had first breakdowns recently. I’m just so fucking tired and I don't know how long I can keep pushing forwards :/.

So the blog starts here, in this kinda difficult situation. Actually I was a bit overdramatic :D The situation is not easy, and I do feel overwhelmed and exhausted, but that’s always infinitely better than succumbing to the neuropathy, ya know. Feeling the recovery effects is also quite fancy although I’m so used to it, I forget how special it is. I haven’t told anything about many adventures and mundane talks with my friends (and also my new roommate), and the drunk nights with stoner rock, trap and Reggaeton (como todo buen latino :) ) in the mad city downtown. It’s quite funny but warning, I’m still a lame, poor Physics PhD, surrounded by other poor science PhDs too, so don’t expect a Hollywood-esque fancy story from me :) Although I wrote “string theorist dude” in the description, there’s not much “dude” in this first post, since I had to do this very long, boring, scientific-like introduction. In summaries always the most relevant things are picked, and the mundane is left aside. But actually, most of the story is mundane, and there will more time to talk about it in the next blog posts. ("String theorist dude" is redundant anyway, because We're All Dudes! but it sounds funny).

If you made it all the way to here, I salute your patience, I’d have quitted long ago :P This is the only time you’ll have to read something so long, so I apologize. The next entries will be much easier to read. I guess that’s everything for today, so see y’all in the next blog entry!

PD: To end the blog entry I decided to include a poem. The poem is in Spanish and known to all latinos, due to our excellent education in the literature and arts, so I apologize if you don't get it, but now there's Google Translate too :)

Todo es underwater

Baby vamo pal cuarto quarter

En la Uru comiendono el pare

Te voa dar duro pa que no me compare, ey

Cuidao con ese mahon que se va a romper

Ese booty lo va a romper

Yo no se si yo te vuelva a ver

Si mañana me voa perder

Tu eres una player me hiciste un crossover

Esta ve metiste me diste game over, eh eh

Porque no me puedo olvidar

El perreo aquel, que se fue viral

Dime si mañana te va a quedar

Despues de la alarma te lo voy a dar, ey

Hoy tu no va a trabajar, ja, no

(Again, I'm putting my progress photos in this Drive. It's useful to track my progress and see how far I've gotten since I started. Although it says weekly, there are a few skips of one week, and a month skip from the 19th to 20th photo due to a travel back home)