In my Safety Dance post, I wrote about using The Gupta Program to calm my hypersensitive amygdala and get back to a parasympathetic state instead of nearly always being in a state of fight/flight/freeze. I wrote about how complicated it feels to use this program while living with cerebral palsy.
There’s been no magical transformation and I’m still working on it. In this post, I’ll refer to many of the core messages in the program. There are over a dozen lessons, with several recordings to watch in each session, and there’s also a 12-week webinar, which is live. I started the program in July, and the next webinar series began at the end of September, so I’m only four weeks into that, while the recordings are obviously self-paced. All that to say, when I use quotations, I’m quoting Ashok Gupta, either from a video recording, a meditation audio track, or a webinar.
I signed on to the Gupta Program to help with Chronic Inflammatory Response Syndrome brought on by exposure to mold. I’ve always been skeptical of CIRS, as it seems only to exist in functional medicine circles and lacks scientific research. But brain retraining can be used for all sorts of conditions, including chronic pain and anxiety, so I figured it was worth a try, especially since the main CIRS symptom I want to ease is my chronic, sharp, neverending throat pain.
Early on in the program, Ashok says, “You don’t have this condition anymore.” If you’re comfortable, he says, you can let the diagnosis go. Sometimes labels are helpful because they provide validation and reasons for symptoms. But it can also be liberating to let go of the label and stop thinking of yourself as sick. Instead of bearing the burden of a chronic illness, you can reframe and think, “It’s just a loop in the brain!” (See the Safety Dance post linked above for more explanation about this “loop.”) It felt good for me to release the CIRS label and stop thinking about mold. My brain is just being hypersensitive and reactive, and I’m retraining it. Great.
But. Cerebral palsy is not “just a loop in the brain” that I can learn to unloop. At first I was trying to only use the program for my throat, for what I thought was mold-related. I figured I was doing fine with CP stuff; those pains are there and I’m okay with them.
Then I did something that really flared up my right SI joint and gluteal tendonitis. You know how it happens–you’ve got a chronic issue, but you don’t realize how good it’s been until it’s bad again. Apparently, I’d been dealing with regular glute/groin/hip stuff, but my SI joint had actually been pretty quiet. Until it wasn’t. Wow, did it hurt. Oh THERE you are, SI joint pain. I did not miss you at all. In fact, now that you’re back, I’m LOSING MY MIND. It really threw me. (Mostly because I feel I could have/should have avoided it, and I did not.) I was angry and sad and so frustrated, and I did not want to deal with it all over again. I knew it would ease eventually, I just didn’t know how long it would take. And I DID know that, now that it was flared, it was going to be easy to continue to mess with it, just by doing daily tasks. Like moving. I realized that I needed to use the Gupta program for all my symptoms, and stop trying to separate the different conditions. I needed to meditate and calm down because panicking about this new pain spike was definitely not helping.
I keep reminding myself that this program can help with chronic pain. And then I automatically think, “But since I’ll always have cerebral palsy, and it’s my ‘maladaptive’ movement that’s creating the pain, how is this going to help?” Then I remind myself for the hundredth time that “We’re not changing our symptoms; we’re changing our worry about the symptoms.”
The goal is not to treat the pain, but to change the brain’s perception of the body, to train the brain to recognize that, yes we have this sensation, but we are not in danger: “Thank you for sending warning signals, but stand down, I’m okay.” Yes, indeed, I DO and always WILL have chronic pain. And what’s more, it’s going to change and shift throughout the day, and through the months and years. I am experiencing and will continue to experience a decline in function. And that’s OKAY; I will handle it. I have to teach my amygdala that all that is simultaneously true and okay. And that’s not easy. Acceptance of pain is really, really hard, but that’s what we’ve got to achieve in order to calm down this overactive response. If we succeed in changing the brain’s perception, THEN the pain may lessen. But we have to be okay with whatever happens. We have to not be attached to the outcome. If we resist the sensation (pain), then we haven’t accepted it. And it’s the resistance, in part, that the brain is reacting to; the brain is perceiving danger.
Have I succeeded in accepting my pain? Nope. Some days I’m better at it than others. Honestly, my throat pain drives me to distraction. Partly because it doesn’t make any sense and I don’t want it to be there. Years ago, I took a cannabis sleep gummy and woke up and it was gone. I was a new person. It was such a relief; I felt lighter and happier and just so much better. It came back a few hours later, and cannabis doesn’t do anything for it now. The idea that I’ll never be rid of it is unbearable. So you can see how well acceptance has been going.
During the day I’m supposed to stop and retrain my brain every time I notice “a negative thought pattern.” This can be anything I think about my body that a healthy person wouldn’t think. For my throat that’s easy: “My throat hurts so much.” “What if this never goes away?” “Maybe it’s another illness we haven’t figured out yet.” “I need to google xyz.” “I wish I could sing along to musicals like I used to.”
But for cerebral-palsy-related thoughts, it’s a completely different story. We’re supposed to retrain “body scanning” (checking the body for symptoms) or any kind of attention on the body that a healthy person wouldn’t have. Attention on the body? My attention is almost ALWAYS on my body! I’m not exaggerating.
People with CP have a constant flow of thoughts like, “Watch out for that ___ in the path. Can I step over/around___, or should I go the other way? Do I bother trying to pick that up or should I save my energy? Whoops, don’t put your hand down by that hot pan; hold on to the oven door handle instead. Stand with your feet farther apart. Careful of your left knee. Engage your core; your back is really hurting. At least try to stand up rather than leaning your belly against the counter.” And at least a half dozen almost-fall-and-catches. It’s really nearly nonstop in order to function. There’s always an undercurrent of the awareness of pain in various places. And of course, if you actually do your recommended physical therapy exercises, that’s more, perscribed fixation on the body. I know able-bodied people have awareness and attention on their bodies, too, throughout the day. So where’s the line? I’ve realized that my addiction to YouTube is my coping mechanism. It’s one thing I can do where I can just relax and be entertained and engaged, and later I’ll realize I didn’t think about my body at all. (It doesn’t always work, but often.)
The program is made from the point of view of a once healthy, able-bodied person who is trying to get back to that healthy, energetic body and mind. The videos say things like, “Have faith that your body knows how to get better and return to health and energy.”
“But I’ve never had energy. My body doesn’t know how to get better. It’s never been ‘better,’” I think in response. I struggle because I know that my body is only going to continue to deteriorate, not return to some kind of amazing state of physical fitness. Then I remembered that as a kid, I truly thought it was weird when a peer would ask, “Does it hurt?” For the first 25ish years of my life, I wasn’t in any kind of chronic pain. I’ve been concentrating so hard on the ways that my body and my abilities and my energy are declining and the ways my pain is increasing. I’ve been grieving. I’ve been worrying about the future. But my brain DOES remember what it’s like for my body not to be in pain. I’m so grateful for those first twenty-five years. Hey, that means I’m only retraining 16 years of brain patterns. Piece of cake.
Ashok says again and again that we need to relax and let go and “Have that belief and faith that you’re on the path to health, that you’re on the road to recovery.” But of course, I’m not going to “recover” from cerebral palsy. So my version of “health” or “recovery” will be different. That’s fine–I’ve just got to get it straight in my brain. Health for me isn’t energetic or pain-free. It’s LESS pain and MORE energy in general. I do think brain retraining can help me with chronic pain from CP. If I can lessen my attention on my body even a little, if I can stop worrying about the future even a little, I can show my brain that I am safe right now, even with CP, and that’s all that my amygdala needs to calm down. Even just a little improvement would be a huge win for me. Furthermore, the potential for better mental health is phenomenal, so I am able to tell my brain with conviction, “You are on the path to better health.” And that’s good.
During the “Soften and Flow” meditation, which we are supposed to listen to at least once a day, Ashok tells us to scan the body (this is the appropriate time to have attention on the body) and find a place of tension. Of course that’s not a problem for me. I usually focus on my jaw and the back of my neck and scalp, sometimes on my forearms. Sometimes on my throat–hey, it could be that everything around my head and neck is so tight that my throat is out of whack. We “become one with the sensations.” We “feel them fully.” Ashok says, “They can’t hurt you.” Here, I used to automatically respond, “It IS hurting me.” I really try to just be with it and not think that anymore. We’re supposed to “welcome them” and treat the sensations “like a guest in our home.” It’s trapped energy/emotion and we’re going to let it go, let it soften and flow throughout the body.
Meditation is really wild. Sometimes my jaw will tingle, sometimes all the way up my face into my eye socket. Sometimes the fronts of my hips will let go and tingle too. Sometimes I’ll feel a giant whoosh through my body and float away. Sometimes my hands will disappear. Sometimes I’ll feel nothing at all. Often, I will cry. Very often, I will fall asleep. Whatever happens physically is gone when it’s over, but the calmness might last for a bit.
I’ve done this meditation nearly 100 times now. Today I scanned my body, and focused as usual on my forearms, trapezius, neck, scalp, throat, jaw. All upper body. When I got to the part where Ashok says, “They can’t hurt you. Welcome them,” I thought, “They aren’t hurting me. They’re trying to HELP me. My entire upper body is trying to help my lower body.”
Now of course I realize that the tension that I have in my upper body is related to the cerebral palsy in my lower body. I know that my shoulders and neck are like a permanent vise I can’t loosen because of my gait and my posture. But you see, I’ve been thinking of them as a vise, and not a help. How is my brain supposed to know that I am safe if it thinks my neck is in a vise? For twenty, thirty, forty minutes, I thanked my muscles for helping me and told them it’s okay for them to let go now. I told them I have the help and support that I need. Did I fall asleep? Yep, I think so. Did the muscles release? No, of course not. We’re talking about twelve or fourteen years of tension here. It’ll take time. And I’m not focusing on the outcome, right? Right.
It just feels so much better to think of these sensations as a help rather than a hurt. Goes a long way toward acceptance. That’s a darn good step. Progress is not linear. I do think I’m heading in that general direction, with each jaw or neck tingle a sign that my brain is learning that I am safe, and that I can continue to be safe even when my body has pain.
What Happened to Your Legs? 