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.
That lets the cat out of the bag (or the dog out of the crate), doesn’t it?
Due to chronic Lyme disease and other chronic infections from tick-borne diseases (TBDs) — my coinfections are Babesia and Bartonella — I have been intermittently psychologically altered since 2007. Admitting this publicly is a “coming out” of sorts for me.
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.
The only definition I’ve found for agitation was among people with traumatic head injury. This feels pretty appropriate, because my TBDs have caused brain damage, though of the closed-skull (non-traumatic) type. Here’s the study’s definition of agitation:
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.