Today’s post feels very vulnerable. It contains two short videos of me that are not the way I normally want people to view me. However, my desire for understanding for myself and for other people with Lyme and other tick-borne disease is stronger than my worries of what viewers might think about me.
I’ve been very sick lately. Partly this is a result of Herxheimer reactions I’m having from a powerful medication I’ve recently started using to fight one of my tick-borne diseases, bartonella. Bartonellosis is also sometimes called cat scratch disease.
Even though I’ve been treating Lyme disease for over five years, there are still people in my life who don’t really understand what herxing is and why treatment sometimes seems to make me worse. So, I decided to video myself going through a herx reaction as a way to help my friends understand.
I also want this information (both the videos and the written information here) to be available to the general public, especially other people with tick-borne diseases (TBDs), their families, and the medical community. TBDs are still not very well understood. For example, there are 26 known strains of bartonella, but when people get tested, they are typically only tested for one strain, bartonella henselea — the strain that causes cat scratch fever.
I never had a positive bartonella test, but because of my other symptoms, known tick bite and other positive TBD tests, I was diagnosed clinically. I hope this post will answer questions about what herxing is and why people with TBDs persist with a treatment that appears grueling.
Often when I tell people that I’m sicker because I’m doing a new treatment, they think I’m experiencing side effects from the drug. This is not the case. According to drugs.com:
A side effect is usually regarded as an undesirable secondary effect which occurs in addition to the desired therapeutic effect of a drug or medication.
In other words, side effects are never good. Whether you stay on a drug that’s causing side effects or not depends on the severity of the side effects and the usefulness of the drug; but drug side effects are never an indicator of efficacy.
A Herxheimer reaction also involves unpleasant symptoms (which can range from brief discomfort to serious and prolonged or even deadly symptoms) that occur after taking a medication. However, these symptoms are not side effects of the drug, itself. Instead, they are the result of massive die-off of pathogens by the antimicrobial medication (usually an antibiotic, but sometimes an antiparasitic or similar). These dead or dying microbes release toxins into the body, and symptoms result until the body is able to process and eliminate these toxins (detoxify).
Herxing is believed to occur when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it. This provokes a sudden and exaggerated inflammatory response.
The treatment of many bacterial infections provokes a Herxheimer reaction. Herxing was originally observed in patients with acute infections such as syphilis. . . . The immune system response to acute infection is sometimes referred to as the immune cascade. For example, in the infamous anthrax attacks people died because by the time they got to hospital the anthrax organisms had multiplied to the point where killing [the anthrax organisms] also killed the patient.
It has been reported that patients with chronic conditions or infections such as rheumatoid arthritis, Lyme, tuberculosis and louse-borne relapsing fever have also experienced herxing when treated with the appropriate antibiotics.
Chronically ill patients are carrying a heavy load of intracellular pathogens by the time they become symptomatic. . . . The immune system response when these intracellular bacteria are recognized and killed causes a similar immune cascade.
In other words, herxing only occurs when a treatment is appropriate and effective. If you are not infected by the particular microbe you’re targeting with a particular antibiotic, you will not herx on that antibiotic. And generally speaking, the worse your infection is, and the more effective the antibiotic is at killing it, the worse you herx.* For this reason, herxing is also sometimes referred to as a “die-off reaction” or a form of “healing crisis.”
Although herxing has caused me a lot of physical and emotional distress over the last few years, I also find it a useful tool. Whether or not I herx on a particular treatment can be a helpful indicator of the presence or severity of a given infection. It can also provide information on whether a given drug is efficacious or not for what we’re trying to treat.
People often ask me how I can differentiate between when I’m experiencing a herx and when I’m experiencing a bad reaction to a drug or suffering from a drug’s side effects. Although it’s not always entirely straightforward, usually the following is true of a herx, for me:
Herx symptoms are often stronger versions of what I was already experiencing as symptoms of tick-borne disease (TBD). For example, I often have increased pain, exhaustion, shortness of breath, and weakness when I herx, but these are already symptoms I’m living with due to TBDs. The herx just makes them more intense.
Some herx symptoms are known symptoms (sometimes esoteric ones) of the TBD I’m treating. For example, burning on the soles of the feet and shin-bone pain are two classic symptoms of bartonella, both of which I have had pop up or worsen when I started a drug that treats bartonellosis. Air hunger and night sweats are classic babesiosis symptoms, both of which worsened for me when I started treating babesia a few years ago with antimalarial drugs. Also, some TBDs tend to act unilaterally and others act bilaterally, so a symptom that was present before in both sides of the body might worsen on one side only during a herx; bad reactions to medications and side effects are not usually this quirky. Although I started having joint pain soon after I was infected by a tick, it was not until I started treatment that I had joint swelling. Five days after starting the antibiotic Flagyl, my toes swelled up. Later, when I started Bicillin (an intramuscular injection of penicillin), my wrists and knees puffed up. Eventually, after sufficient treatment, my toes and joints regained their former appearance. Likewise, I was having trouble voicing when I woke up yesterday morning, and I was already exhausted and in pain, though happily, my voice had returned to full strength shortly before I started my infusion. (Also, I was working so hard while being videoed at explaining what was happening with me — using notes to try to be comprehensible and accurate — that I actually think I look less sick than I was. After we stopped taping, for example, I went into an extended coughing-and-trouble-breathing jag and also was just lying there and unable to move my arms much to rest up from the exertion, but hopefully you get the idea.) So when my voice went away again during the infusion (as you’ll see in the video), that was a pretty obvious sign of herxing, but I have been nonverbal most of the last six weeks, whether or not I’ve done a recent infusion.
Herx symptoms usually hit hard and fast and then (eventually) go away. Most of the time, if I take a new antibiotic orally or by intramuscular injection, the herx will start within a day of the new treatment. Sometimes within a few hours. There are variations. Sometimes it starts out mild, with just one or two symptoms, and over the course of a few days, the symptom get stronger and others reveal themselves. If I am infusing the antibiotic (intravenous therapy), the herx usually starts within minutes (as you’ll see in the videos below). How long herxes last varies a lot. I seem to herx for much longer than most other Lymies I’ve talked to. I’m not sure why. Maybe it’s because I was so severely infected with so many pathogens for so long, and then I started aggressive treatment with multiple drugs, full strength, at once (which I will never do again and strongly advise against!), but I herxed for well over a year on some drugs (probably because they were in combination). With side effects, or other adverse reactions to drugs, usually I do not start out with that symptom, and then it appears and increases over time. With herxing, it’s the opposite: it starts out strong, and then it gets less severe. Eventually the herxing stops and I feel better on the antibiotic than I did before I started it.
By now I am familiar with what most of my TBDs do and what my herxes feel like. Some examples are listed above: muscle and joint pain, exhaustion, tremor, weakness, dysphonia, etc. Other symptoms were harder for me to clue in to. For the first year or two after the tick bite, I was really crazy a lot of the time. I didn’t realize that the way I was feeling emotionally was a symptom of the TBDs. I also didn’t know what herxing was. So, I was already experiencing a lot of psychological and behavioral symptoms that I wasn’t really aware of. (I just thought everyone else was being unreasonable.) Then, when I went on antibiotics, the symptoms got worse. The more powerful and effective the treatment was, the crazier I got. This caused serious damage to my relationships and sense of self because I was not aware of what was happening, nor did I have the supports I needed to manage it. Now, before I start a new antibiotic, I tell key people in my life so they can be on the watch for any psychological symptoms I might be unaware of. However, after six years of dealing with this, I’m now very tuned in to what is “me,” and what is “the bugs eating my brain.” Fortunately, I don’t have psych herxes with every new drug. They seem to be worst for babesia (mood swings, desolation, hopelessness, paranoia) and Lyme (agitation and rage).
Below are two very short videos I made yesterday. The first one is at the beginning of my infusion, and the second one is 25 minutes later, at the end of the infusion. I chose to video yesterday’s infusion because: 1. Yesterday morning I had relatively clean hair and good natural light. 2. I was increasing my dosage so I thought it was likely I would herx. (As it turns out, I herxed much faster than I’d expected.)
The Youtube of Part 2 is below, but it’s all nonverbal and signed, so unless you can understand really exhausted, broken ASL, you’ll want to watch the captioned version.
Now that you’ve watched the videos, I hope you will keep these three things in mind:
Herxing subsides in time. I will not go through this every time I infuse this medication. Eventually it will make me feel better, not worse. I’m on several other antibiotics that have helped me improve a lot, and if I go off them, I tend to get worse (unfortunately). Meanwhile, the herx tells me the drug is doing what we want: killing the bacteria.
Everyone’s herxes are different. There are some common bartonella symptoms, but each person’s constellation of symptoms are unique.
If you are starting treatment for Lyme or other TBDs, I strongly recommend only going on one new treatment at a time until you are tolerating it well and also starting at low doses and ramping up over time. In both the short and long run, it’s safer and kinder to yourself not to try to tough out the most extreme herx possible.
I hope this was useful. I welcome comments and questions. I also hope you will share links to the videos and to this post to spread awareness of tick-borne diseases and their treatment.
-Sharon, the muse of Gadget (canine Lymie), and Barnum, SD
*This does not mean that herxing always occurs every time someone takes an antibiotic for a bacterial infection! Some types of infections are much more likely to cause herxes than others, and a few fortunate people don’t seem to herx in situations where others do.
P.S. Betsy walked into my room later that day and said, “Are you wearing makeup?”
I said I was because I’d made a video of myself, and then I showed it to her.
She said, “You put on makeup to show how sick you are??”
I said no, not to show how sick I am, but to show what herxes can look like. And, “Just because I’m sick doesn’t mean I want to make a video looking like crap!” I mean, these images stay on the interwebz forever…. Sheeh! It’s a femme thing….
Transcript of First Video:
Sharon is propped up in bed, oxygen cannula in her nose and IV line running from under her shirt off camera to her side. Sharon: Hi, it’s Sharon. I’m just starting my Rifampin infusion this morning — to show the difference between before a herx and after or during a herx. Right now, before it’s starting, my pain is about a four or five throughout my body. And my voice is working, as you can hear. Oh, it’s already starting. [Voice becomes scratchy.] I’m feeling some tightness in my chest, and um, starting to get cognitively impaired, and my voice is starting to go a little bit. And I’m starting to have trouble breathing, which is why I set up the oxygen before we started. But I was not expecting it to go this fast. [Voice becoming more hoarse.] So [laughs, coughs] I’m a little surprised and unprepared for how fast it’s hitting, and I’m going to take a break now and finish recording later. Off camera: Cut? Sharon: Yeah.
Transcript of Second Video:
[Sharon lies in bed and begins signing. She signs with her hands low, near her lap, and she doesn’t body shift. She is slumped against the pillows more than in the previous video and sometimes breathes hard with effort. She is not making eye contact with the camera but looking to the side at her computer screen.]
Sharon: Now, near the end… [looking toward the IV pump]
Woman’s voice: Signing? Infusion?
[Sharon shakes her head no each time the other person speaks.]
Sharon: It’s hard for me to breathe. I’m using oxygen at 4 LPM [liters per minute]. Pain is up, muscles locked up. Burning pain in my right shoulder, diaphragm, and right foot. And I can’t move my legs. More difficulty moving my body. For example, grabbing, uh. . . . [Sharon looks around and reaches for her pill box next to her and picks it up and moves it closer to her, which seems to cost a great deal of effort.] Sharon: That’s work! [Laughter turns into coughing] It’s hard to think, to find the right words. I’m reading now — to remember to say, um…. This is how hr… no, herx from bartonella looks. Thank you. That’s it.
This post is dedicated to the memory of Laura Hershey.
I’m working on a new skill with Barnum, and it’s going well. It’s not a skill I’ve trained with my previous service dogs, so it took some creativity to figure out. I’m pleased with the progress we’ve made, and I even have a couple of training sessions on video (see the end of the post for the video).
Normally, with a new skill to reveal, I’d have pounded out this post as fast as I could. Instead, I’ve been procrastinating, nervous as hell, for several weeks, about writing.
Well, no. It’s not the writing I dread so much as the moment I click the “Publish” button.
I thought this would be an appropriate post for the topic of “relationships,” because the changes in my moods, behavior, and personality in the last few years have greatly affected my relationships with my friends, my health care providers, myself, my previous service dog, Gadget, and now, my service-dog-in-training, Barnum.
This is not my first “coming out.” I came out as bisexual at age 18, and then again as lesbian at 20. Older, wiser queers told me that coming out is a lifelong process — that you are always meeting new people, and deciding whether to come out to them.
This is true, although by now, I’ve been out as queer for most of my life. “Coming out” about having chronic, intermittent mental illness is a whole ‘nother ball of wax. It’s taken me until almost just this minute to admit it to myself, let alone naming it publicly.
I usually use a lot of euphemisms and skate around the issue with comments like, “I’ve sometimes experienced psychological symptoms due to Lyme.” Or, “I have neurological symptoms that affect my mood and behavior.”
I don’t like applying the term “mental illness” to myself. That realization alone — my queasiness at identifying this way — is painful: I’m a disability rights activist. I believe in cross-disability unity and support. Many of the people I love most have psychiatric struggles, and I’m not aware of judging them or viewing them as “less-than.”
I have long considered myself an ally around mental-health oppression. How can I have so much internalized ableism about mental illness?
Part of the answer has to be that it’s always different when we become more of a “them,” than an “us.” Like one feminist said to another, “I have nothing against lesbians. I just wouldn’t want my daughter to marry one.”
Laura Hershey*, the writer and disability rights activist (and lesbian), wrote a poem which has become something of a disability-rights anthem. It’s called, “You Get Proud by Practicing.” I believe this to my core. I got proud of being a dyke by coming out proudly, again and again.
It didn’t hurt that the reason I’d figured out I was a lesbian was that I’d fallen in love for the first time. Falling in love is often the reason women realize they’re gay. Disability is not as easy to fall in love with.
I’ve had physical disabilities since 1995. Here, again, I had some practice and preparation for being proud, having been a nondisabled member of the disability rights community before getting sick, myself. That helped me to accept my own disabilities much more quickly and fully than if I’d started from scratch.
While the disability community is my home, and I am proud of being part of it, there’s no denying that my illnesses cause a great deal of physical suffering and are a source of loss and limitation. I don’t celebrate my pain, exhaustion, and insomnia. Nonetheless, disability is my identity. It is a part of me, and always will be, even while I try to regain my health.
My pride as a member of the disability community makes it harder to admit that from 1995 until recently, I took satisfaction in saying that my disabilities were solely physical and cognitive.
For example, I know plenty of people with multiple chemical sensitivity who have reactions to exposures that include crying, depression, anxiety, or anger. I thought that because my MCS didn’t include those symptoms, I was special, somehow. I thought it made my MCS more “real.”
I’m trying to have compassion for myself. I’m a member of so many marginalized groups as it is; nobody chooses to get hit with another pile of stigma.
As I own my regrets, I try to embrace what these hierarchies I unknowingly bought into tell me about my own feelings of self-worth (or lack thereof). Writing this post is a big step for me in practicing being proud.
Even more to the point, the disabilities I’ve had most of my adult life have required me to convince multiple doctors (and other gatekeepers of disability services), for years on end, that my illnesses are “real” (i.e., not psychosomatic), in order for me to receive appropriate diagnoses and treatments.
Of course, this dichotomy is false and damaging. Mental illnesses are real, too. And having a psychiatric condition does not rule out a physical condition, or vice-versa.
The fact remains, though, that for people with CFIDS, MCS, and Lyme, the choice is often an untenable one. Either admit some element of psychological symptomology and be treated like a “crazy” and receive no medical care (and therefore no financial or other supports) — or worse, receive damaging, inappropriate treatment. Or, vigorously deny any emotional suffering that might accompany the physical illnesses, lest it eclipse all other forms of illness or disability.
It should be clear by now that my relationship to myself and to my healthcare providers has been pretty fraught around the issue of mental health. That’s just the tip of the iceberg.
The changes to my mood, personality, and behavior began during the summer of 2007, when I began treatment for Lyme disease. At the time, I didn’t know about Herxheimer reactions (known informally as “herxing”).
This is the term for severe worsening of symptoms when antibiotics or antiparasitics kill off pathogenic microorganisms, a process that releases toxins into the body. Herxing was first noted and named in syphilis patients, which is appropriate, because the spirochete that causes Lyme is very closely related to the one that causes syphilis.
Because the infections I have can affect all systems of the body, herxes are usually multi-symptom and multi-system. The list of symptoms I’ve experienced when herxing is too long to attempt, but some of the standouts are migraines, body pain, severe weakness/exhaustion/immobility, memory/thinking impairments, vocal-cord apraxia (inability to speak), and, of course, the psychiatric symptoms.
Before I learned about herxing, and how severe and arduous it can be, I started each new treatment at the full dose, because I wanted to kill the damn bugs and recover as fast as I could. Little did I know how this would damage my life.
When I was receiving no treatment for nine months, because I couldn’t convince any doctors I still had Lyme, my psych symptoms got worse. I had major mood swings, rage, agitation, suicidality, and a general feeling of disconnection and hopelessness.
Then, in October 2008, I went on serious Lyme and babesia treatment for the first time. I think my friends and I all expected me to improve.
Instead, I herxed hard for over two years, starting with the initial Lyme and babesia treatments, and then adding additional ones, as well as treatment for Bartonella, which my doctor and I suspect is the biggest culprit in my psych symptoms. The result of all this was that previously dormant symptoms emerged and existing ones got worse. And stayed worse. Continuously. It was hell.
It’s hard for me to remember that time. This is literally true, due to neurological damage, but I also just don’t want to relive it, even in memory, even for a moment, because the physical and emotional pain and suffering were enormous.
The psychological symptom that has been the most persistent, and which I think has cost me the most in lost and damaged relationships, is agitation.
I had always assumed “agitation” was anxiety, because I think that’s how the word is used in general parlance. However, when I read some psychiatric case studies of people with Bartonella, their description of many of the psychological symptoms I had, especially agitation, was right on target.
When I experience agitation, the best way I can think to describe it is as obsessive rage, with an undercurrent of low-level anxiety. I get really angry about something that may or may not be a big deal, and then I just get stuck in the rage.
Physical aggression, explosive anger, increased psychomotor activity, impulsivity, verbal aggression, disorganized thinking, perceptual disturbances, and reduced ability to maintain or appropriately shift attention were rated by at least 50% of the sample as very important or essential to agitation.
This gives a relatively clear picture of what my agitation was like when it was at its worst, with the exception of the physical aspects (wasn’t up to much motor activity). Thank goodness, my agitation has not been nearly that bad in the past year or two.
However, when it was bad, along with all my other illness issues, I was in a state of ongoing crisis. The result was that my psychotherapist of many years terminated with me, and my two best friends — who were my family of choice — and three additional friends, ditched me. There was a ripple effect, as I lost the larger circle of friends and acquaintances who were associated with the closer people who abandoned me.
During the worst struggle of my life, I lost all the people I could see in person, except my partner, my parents, and my personal care assistants. Now, I only have friends via phone or email.
I also lost myself.
I hadn’t known this was possible. I’d always had a very strong sense of self, and I’d worked hard to become a person I could like and respect. Lyme tossed that out the window. Suddenly, I was a miserable person who felt out-of-control of myself and my behavior, and despised myself almost as much as I despised those around me.
My saving grace was Gadget. He was always his same, normal, doggy self, and he didn’t seem bothered by my moods. When I was suicidal and had convinced myself that I was a burden to everyone, that they would be relieved if I died, I reminded myself that I was not a burden to Gadget, that he needed me as much as I needed him. I told myself that I had to stick around for him.
In many ways, he saved me during my worst times; not only did he assist me as my service dog, he listened to me and understood me when nobody else could. He provided a soft, warm presence. Most healing of all, when I was being abandoned right and left — and even those who stayed in my life let me know how difficult I was — Gadget didn’t judge me. He never blamed me for being sick, whatever form it took. He was a dog.
He just was. We just were. I needed that.
Losing that source of love without judgement, when Gadget died, was devastating.
A lot has changed since the worst two or three years of Lyme. For one, I am “me” much more of the time. I guess you could say I’m finding my new self, now.
I’m not herxing all the time anymore. That is a blessing. Being able to laugh, to “let things go,” to be glad I’m alive, to feel gratitude and joy, to be relatively stable in my moods — all this, and more, I can never take for granted again.
However, even when I am herxing, I am much more aware of when and how much I’m altered, and I have many more tools to manage the symptoms. I have a new therapist; I’m building a support system by phone and internet; I have more strategies to cope with “the crazies,” as I call them.
A big strategy is to isolate myself from other people, as much as possible, so that I don’t take my rage out on them. I try to distract myself by watching a DVD on my computer, or dog sports on youtube, or listening to a book. I tell myself not to throw things, because they will break! (This seems obvious, and yet, when I had a bad agitation period and threw something, I was surprised that it broke. I guess that’s the impulse-control aspect.)
I remind myself that it is not really “me,” it is just herxing, and it will pass. I do deep breathing, but in all honesty, I don’t think that helps much. Meditating would help, but I have trouble doing it without a partner.
And now I have a new tool, possibly one of the best in my toolbox. You have probably guessed that it is Barnum!
Like my two previous SDs, Jersey and Gadget, Barnum will primarily be trained in physical service skills, including labor-saving tasks (retrieving, opening and closing doors and drawers, turning lights on and off, getting the phone, helping me dress and undress, providing stabilization for transfers), and memory/cognitive issues support, such as sound alerts (e.g., waking me when my infusion pump alarm or timer go off).
In addition to these tasks, it occurred to me recently, when I was experiencing a bout of agitation (because I am on a new antibiotic and herxing again — fun!), that maybe I could train Barnum to help me get past it.
For some reason, my agitation expresses itself the worst with people, and the closer I am (emotionally) to the person, the more I fixate on them as the source of my rage. (Even if a little voice is telling me that I’m being irrational, I sometimes get enraged at the little voice. Or, I feel ashamed for being irrational, while continuing to feel enraged, which is the worst of all.)
I also, as I indicated above when I said I have the urge to smash thing, can feel angry at inanimate objects. However, even when I’m agitated, I generally feel amused by, or loving towards, Barnum. In extreme cases, I feel distant from him, too, but when that happens, I just give him something to chew, or he takes a nap.
A couple of weeks ago, I was having bad agitation, but I was able to think clearly enough to get curious: I decided to experiment with behaviors Barnum might be able to perform that would interrupt or soothe my agitation.
I had already taught him “chin,” which means “hold your chin in my palm.” I’ve been shaping that behavior for duration as well as for force/pressure. (I like him to really press his chin into my hand, not just rest it lightly.) I have started to use the cue for other locations, too, so I can say “chin” and point to my thigh, and he will put his chin on my thigh.
I taught him “chin,” in part, because I thought it might be useful for psych symptoms. I thought it might feel grounding to have that contact. However, I knew I’d have to wait until I was having the symptoms to try it out, because one of the most challenging aspects of managing my psych symptoms is that I can’t tell how they’ll manifest when I’m not in the thick of them.
We tried the following behaviors, some of which I cued, and some of which he offered, through free-shaping:
Licking the back of my hand. This felt good, but it’s not something he could sustain, and since my agitation can last from 15 minutes to several hours, it didn’t seem worth pursuing.
Breathing into my palm. The tactile combination of the warmth, moisture, and rhythm of his breath was grounding, but again, this is really not something he could sustain, particularly because it works best when he breathes out heavily, in a sigh or snort, and if I asked him to do that repeatedly, he’d end up hyperventilating!
Chin-in-palm, which he knows well, wasn’t enough pressure — not grounding enough — to really dispel the agitation. It felt too “small” for the magnitude of my feelings.
Resting his forelegs over my calves. The first night we tried this, it did make me feel a little better emotionally, but I was experiencing much less pain in my lower legs than I normally do. I have trained Barnum not to step on, or lie across, my legs, but I was letting him experiment while we free-shaped. I thought it probably was not a good long-term solution due to the body pain issue. Sure enough, we tried it again the next night (because I was agitated several nights in a row), and the second night, my calves, ankles, and feet were burning, so I did not want him touching any of those parts.
By this point, we had not come up with anything that really felt “right.” However — and this is a big however — the process of training, itself, completely turned my mood around!
For one thing, clicker training is so much fun, it’s incompatible with staying grouchy. This is especially true for free-shaping; I find it impossible not to be charmed, proud, and delighted when Barnum offers ideas of his own. (I explained free-shaping in this previous post.)
Furthermore, clicker training requires total concentration and absorption. It is a mental, emotional, and physical sport:
Physically, both hands are busy, one with clicking, the other with treating, and sometimes a hand is needed for targeting or luring, which demands even more work (particularly because I do not have three hands).
Precision timing is a must, which places great demands on body and mind (especially since hand-eye coordination has never been my strong suit).
It’s also important to stay completely calm and focused so that I am not unintentionally cueing behaviors or otherwise telegraphing undesirable messages.
Finally, it’s a dog-training truism that you cannot train angry. It’s just a bad, bad idea. Thus, mastery of my emotions was not so much the desired outcome as the prerequisite to make the attempt.
Another benefit that I had not anticipated was that, because we were experimenting, I was constantly checking in with my body/mind about whether, or how much, Barnum’s contact was affecting my levels of anxiety, tension, and the like.
As for the obsessive aspect, I didn’t have any time to obsess — I was way too busy, body and mind, trying to get just right that split-second timing of the click and that treat delivery (speed and location), deciding when to raise the criteria, and on and on. When we were done with our session, I found that my rage had just melted away.
While clicker training often looks simple and repetitive (and in some ways, it is), if you’re doing it right, you are constantly not just reacting — which is one form of decision-making — but also planning your next few clicks. In this way (simple, yet complex), it reminds me of martial arts, which also demands great mental, physical, and emotional control and energy, and where you are both reacting and planning several moves ahead, at the same time.
When trainer and trainee are both problem-solving in a fluid, yet rapid-fire, state, it’s exhilarating and challenging! There is just no room to ruminate on rage when your mind is so engaged otherwise.
After a while, I decided we both needed a break. He happened to lie with his body all along my left side, particularly against my outer thigh, which is numb from some nerve damage, so it’s one of the few places that doesn’t usually hurt a lot.
Also, my thighs, in general, are not usually nearly as painful as my lower legs, so when he also flopped his head onto my thigh, the weight of his head wasn’t problematic. In fact, I realized this was the behavior I wanted to capture. With his body against my side and his head on my thigh, I felt better right away.
I went right back to reinforcing and shaping in order to capture the behavior. (Fortunately, I keep a bag of dog treats in my bed at all times.) Barnum was very relaxed, too, and often kept his head on my leg and just let me pop pieces of hot dog right into his mouth, allowing me to click with a very high rate of reinforcement.
At one point, he rolled his shoulder partway onto me, so instead of just his chin, he pressed with his cheek, letting even more of his big head rest very heavily on my thigh, which was perfect. I click/treated as many repetitions of that as I could. I tried to shape for a very heavy head, and also reinforced heavily for using his cheek instead of just his chin.
The fact that training itself is (psychologically) therapeutic for me is a big plus. The first night we did “agitation-interruption training,” I started out barely able to breathe for rage. By the end of our first session, I was laughing and beaming. Really!
Unfortunately, there’s a physical cost. I’ve written about this before: Whatever is good for me physically is bad for me emotionally, and vice-versa. This is no exception. I was totally flattened by pain and exhaustion the next day. But, it was worth it, that time around.
(Note: If you’re having trouble accessing After Gadget video via email or on an iPad, you should be able to view them on the web and/or from a “regular” computer without a problem.)
Here is a video of parts of the second and third training sessions:
There is no dialogue in this video (partly because my voice wasn’t working the second day), however a captioned version is available here, so you can see when the clicks occur.
We have now done three or four sessions on this skill, and I’ll see where it leads us. I anticipate that, although he seems to be enjoying snuggling up with me at the moment, once the weather warms up, he might not want to spend time on the bed. Barnum really is a cold-weather dog. He almost always seeks the coolest possible location. Pressed up against me in bed is about the warmest place in the house. But, we’ll just keep on noodling with it, and see how we do.
Once again, my relationship with my service dog (or SDiT), is turning out to be some of the best medicine:
For, what is training after all, but practicing? He is helping me practice becoming “unagitated.”
Further, when Barnum and I are working well together as a team, when we are training, I feel so proud of him that some of it spills over onto me.
Now I have a way of approaching my scariest, and in some ways, most painful symptom, the one I’ve been ashamed of for so long, and finding it less scary. Finding that there is something I can do about it, through my teamwork with Barnum.
Thank you, Barnum, for helping me to get proud (and chill out), by practicing.
Thank you to my readers, for helping me find the courage to write about this topic. Please support the others participating in the Blog Carnival of Mental Health!
– Sharon, the muse of Gadget (I had a few phobias, but otherwise I was supremely mentally healthy), and Barnum (SDiT and mental health practitioner)
*I’m sad to report, to those who don’t know, that Laura died a few months ago. I was so shocked when I heard. She had been a role model and a source of learning for me since I first started studying the disability rights movement, 20 years ago. A little over a year ago, I was fortunate enough to work with her directly, as she spearheaded the protest of Jerry Lewis’s “Humanitarian Oscar” for his MDA telethons. She was so gracious and encouraging in my efforts to provide “ground support” by doing what I could online, from bed, since I couldn’t go to Los Angeles, like she and others were. I haven’t written about her death, because I have been at a loss for what to say, until now.
Sorry for the lag between posts. I’ve been focused on the following:
1. Learning how to make After Gadget more accessible and then going back to revise all previous pages and posts to get them up to scratch. (Almost, but not quite done. I should be done when the next “real” blog goes up.)
P.S. Even if you have not received a complaint about your blog’s inaccessibility, please do not assume it works for everyone. For example, I haven’t had any complaints about After Gadget, but I’ve learned some ways to improve it.
Personally, I flee many a website or blog because it’s not accessible to me, without ever telling the webmaster or blogger that there are problems. Aside from it being a pain in the butt to constantly fight for access, it’s not alway even possible if you can’t access the site to begin with. Stepping off my (fragrance-free) soap box now.
2. Sleeping. You know, it turns out that sleep really can be excellent. I don’t think I’ll make it into a lifestyle or anything, but now and again, it’s very refreshing. I recommend it.
3. Puppy preparations!
A. Which puppy?
The breeder has narrowed it down to two boys as the best candidates for what I’m seeking in a future SD. (The latest puppy photos are at legacybouviers.com, an inaccessible site. Click on “New Arrivals.”) They sound unbelievably adorable and sweet. They both love to be held, and you can pick them up and rub their bellies and paws, and they just go limp! Isn’t that the best? And, although they like to play, they are good at settling down and are super mellow, which I need, because when we are aren’t training or working or exercising, we will be resting a lot. They also are curious and bold, but not overly obnoxious. Of course, it’s still too soon to tell. The final decision won’t be made until formal temperament testing is done between weeks seven and eight.
B. How to get the puppy here?
I’ve been working on getting Monsieur le Petit Chien here. I’ve decided to book flights for Betsy to fly in, pick up the puppy, and fly back. I have not booked a flight in fifteen years, if that, and never before booked a pup as “carry on,” so I’m a bit nervous about making it work out. Anyone with experience in this, feel free to post suggestions or soothing remarks and encouragements.
C. When should I take leave of my senses, before or after the puppy gets here?
Most people probably think that getting a puppy in the first place requires taking leave of your senses to a certain degree. I’m not going to argue.
In my case, there are also predictable occasions (and some unpredictable ones) when I have what I affectionately call, “the crazies.” This usually happens when I start a new antiparasitic or antibiotic medication to attack one or more of the tick-borne diseases (TBDs) that have damaged my brain. It’s part of what’s known as a “herx” or a Herxheimer reaction. Herxes can last for days or months. When I was adding new treatments every few months, I essentially herxed for over two years. That was brutal, but I’ve learned a lot from it.
One thing I’ve learned is that it’s better to be honest with myself and others about what’s going on. This helps me handle it better; it helps the people around me handle it better; and it allows my doctors and me to make better decisions about my health care. It also makes me less secretive and ashamed of it, which contributes to all of the above, as well as, in my opinion, making the world a better place (and delusions of grandeur are not even one of my symptoms; I come by them naturally). That’s why I’m taking you on this tangent: one of my roles in life, and in this blog, is to destigmatize and demystify stuff about disability so that disabled folks will have to put up with less oppression. For example, I am certain I’m not the only one taking steps to address psych issues before I get a puppy.
Case in point: I don’t want to be in the middle of a new, big, flaming psych herx when I welcome my puppy into the first home he will ever know after leaving the nest!
So when I talked to my doctor yesterday about which protocol we’re switching to, I had the pup in mind. My doc and I agreed that it’s time to attack my Bartonella infection because it’s been undertreated, and it’s caused me loads of problems. She suggested adding a new IV medication. While all my TBDs can cause psych symptoms, the worst are probably related to Bartonella.
“Would this be likely to kick up a psych herx?” I asked.
“Oh,yeah,” she replied with gusto.
“Let’s start that now,” I said.
I told her that I’m getting a puppy in a month, so I want to get “the crazies” out of the way before the puppy arrives. She seemed delighted that I was getting a puppy and asked if it would be the same breed as Gadget. Apparently, I now have medical approval for puppy-lovin’! (Not that disapproval would have deterred me, at all.)
4. I wanted to post some more celebratory blogs occasionally, to keep you all from burning out on my grief, but my computer has been refusing to cooperate.
A long time ago I wrote an essay for my Sick Humor column called, “The Hindrance Dog.” It details an incident wherein a rambunctious new rescue, who is young but strong, teaches his naive handler the dangers of attaching his lead to her mobility device.
I thought this would make for a quick-and-easy post while I worked on items 1, 2, and 3 above, but my computer is refusing to allow me to translate it from its old format. I’ll get there soon, though. Humor is in store, I promise ye.
Instead, here is a different bit of celebration.
I received the email below last night from the Service Dog list on Dogster. I was very honored. Everyone there was very supportive of what Gadget and I went through. (I joined less than two months before he died, though I didn’t yet know that he was dying.) So, it really means a lot to get this posthumous recognition of Gadget — and of our partnership. Thank you, Dogster SD list moderators.
[Accessibility note on the link below: I know guide-dog partners who use Dogster, so I assume it’s text-reader accessible. However, it’s graphically intense, with lots of colors, flashing and moving things, and very small print.]
Congratulations to Gadget’s mom for Gadget being service dog of the month in memory for February!
Gadget was a male Bouvier des Flandres whose page can be seen here:
Gadget passed away in November, but his mom made a wonderful blog about his life and work, and how to cope with the loss of one’s service dog. He was a truly special dog, and continues to impact people today. He knew over 100 commands, and helped his mom not only with her disabilities, but also with greyhound rescue.
So congratulations to Gadget’s mom, and Gadget, we miss you!
Thanks for bearing with me. Another blog will be out soonish.
After Gadget 