Archive for the 'How I Sleep (or Don’t)' Category

Insomnia and Creativity and Neuroatypy

I haven’t slept since yesterday afternoon. Before that, I slept for two hours, from 2:00 AM to 4:00 AM. Before that, I slept from . . . well, I can’t remember. I can’t keep track of which days are which anymore, even worse than normal, because if I don’t sleep on Sunday until 6:00 AM Monday, does that count for Sunday’s sleep or Monday’s?

I’ve had a range of sleep disorders since I first was chemically injured in 1995. In fact, when I was falling ill, I remember having terrible nightmares, every night, and I didn’t know why. Then, as the CFIDS/ME and MCS got worse, I slept less and less until I was sleeping literally no hours per night. Thank god, a doctor gave me Elavil and that worked.

Over time, I had to raise the dose, but it helped a lot with sleep and with body pain, as I discovered the few times I had to go off it. And I’ve added other things that help a little. And I’ve tried everything that’s been available for sleep and most of them, I have one of two reactions: 1.  No reaction. As if I’ve taken a sip of water. I can take twice the normal dose and feel nothing. I’m wide awake!  2. A paradoxical reaction. This is when you take, for example, Valium, and your body’s response is shaking, sweating, anxiety, racing thoughts, pounding heart. Well, you get the picture. Not sleep-inducing.

I’ve been on a vampire-ish schedule for many years. It’s common in people with CFIDS/ME — we don’t “do” morning. But after getting chronic Lyme disease and coinfections, it’s gotten worse and worse. Lately, my body seems to have written a contract which I don’t remember signing that if I fall asleep before 5:00 AM, I will sleep, at most two or three hours, and then I will be awake for another twenty-two or so.

Sadly, the less sleep I get, the more pain I’m in. The more pain I’m in, the more exhausted. The more exhausted, the more shaky, mobility-impaired, voice-impaired I am. And all this isn’t even touching on the cognitive impairment: the brain damage from the carbon monoxide poisoning. The brain and neurological damage from Lyme and babesia and Bartonella. These days, I can’t read. Not only can I not read books, I can’t even read long emails. I can’t remember words I used to know. I keep wanting — desperately, desperately wanting — to blog about how torturous it is to be a writer who is brain injured and can’t read and can’t even explain why I can’t read. Can’t explain why my cognitive impairment has gotten so much worse. For a year, I’ve started draft posts here and at my writing blog, about my cognitive impairment and how it affects my writing, and I never finish them.

And what makes the level of illness and dysfunction and cognitive impairment I’ve been dealing with even worse is that I now have the desire to write again, to be creative again, which Lyme stole from me for a few  years, but I can’t access my creativity. That spark. The place where leaps happen in poetry or fiction. In world-building. In taking risks.

Instead, I follow this bludgeoning, insistent mundanity, of persuasive arguments about disability rights or descriptions of training regimes — essentially, “What I did (with Barnum) today.” And I wonder where the other part of me has gone, and if it will come back.

One thing I have noticed: Often, when I do my best writing — my most risk-taking, creative writing — is when I am really sick, and often in the middle of the night. But it’s a certain kind of sick. Like, a certain migraine state, if I can write through it, can produce good work. A certain level of disconnection from my body required by, or a result of, pain and exhaustion and cognitive strangeness.

These are usually short pieces, because I’m too sick to write anything long, and if I do attempt something long and don’t finish it, when I go back to work on it in my “normal state,” I can’t recapture the spark. It just sits there, unfinished. I have possibly hundreds of such pieces.

But, if I’m too sick — if I’m really, really sick — I can’t write at all, and I don’t want to write at all. I have no creativity. I don’t care about anything except the amount of pain I’m in and just trying to do as little as possible — not to breathe or swallow or shift in bed — to get through it. I have no leaping thoughts. I have no desire.

Then, a couple of weeks ago, I read a great article in Scientific American called The Unleashed Mind: Why Creative People Are Eccentric. I’ve never considered myself exceptionally creative nor exceptionally eccentric. I think I’d score above average on creativity and possibly a bit on eccentricity, but nothing like the examples they gave. However, most of the focus of their research was that the connection between creativity and eccentricity is people who tend not to filter out a lot of sensory stimuli and other information that we mostly consider “background noise.”

To me, this fit with the state I’m in sometimes when I’m sick enough — especially when something neurological is going on, like a migraine, which is believed to be a form of slow seizure, that that shifts my thinking. And it fits why I haven’t been having these spells of creativity — because now, when I’m sick, I’m too sick to write. And my brain is too impaired most of the time to have that plasticity to leap when there are opportunities. It’s filtering out too much. Not just what normal brains filter out, but additional stuff — words, memories, concepts.

And then, the bout of really extensive insomnia. It’s coming up on 24 hours since I’ve slept. And I entered two flash fiction contests today. I haven’t done any creative writing for many months, and now, when I literally almost fell over, because my legs gave out when I was transferring from chair to bed, because my muscles are so shaky from exhaustion, I could slip into that place where I could let go, and my thoughts took me places.

Are they GOOD places? Is the writing interesting or worthwhile or actually creative? I have no idea. I’m too exhausted to have any clue. But I did it, and that’s something. And it will probably have to be something I remember for a good, long while, because when I crash at the bottom of this crash, it’s going to be a severe, severe crash. I can feel it in the way  my body is locking up. So I have a certain desperation to get this post out before it does.

If you want to read what I wrote today, I entered the #TuesdayTales contest at GlitterWord, over which you have no control of the outcome. And I entered my original and favorite, #FiveMinuteFiction — and I’m a finalist! So, you can actually vote for me, if you want to.

And now I will go to sleep. I don’t know when you’ll hear from me again, but maybe there’ll be a leap somewhere between here and there.

– Sharon, the muse of Gadget, and Barnum, SDiT extraordinaire

Waspish Whatever-Day-This-Is: By “PTSD” I Mean “PTSD”

I hope this is coherent, because I’m having a lot of trouble focusing and thinking clearly. In the past twenty-four hours I’ve periodically been so dissociated I’ve had trouble keeping track of the day and trouble speaking. However, at the moment I’m calmer than I’ve been. Perhaps this is the eye of my emotional storm of anxiety.

As you may be aware, the East Coast of the US is facing a storm called Hurricane Irene. My sister-in-law is named Irene, but I bear her no ill-will. I just want to state that for the record.

I’ve written before about the ice storm two years ago that knocked out power — water, electricity, heat, phone — for a week during the winter, and how I couldn’t be evacuated due to my disabilities. And how I feared I would die. And how, in the aftermath, I suffered terrible losses, while in acute PTSD.

I did not have post-traumatic stress disorder (PTSD) before that experience. Now I do. This seems a hard concept for people to grasp. I’m not sure if it’s because people in general don’t want to hear about my anxiety, because it feels uncomfortable for them (perhaps a sense of helplessness that they can’t “make me feel better”?), or if it’s because it’s hard to grok that someone could have PTSD from “a simple power outage” — as opposed to more well-known causes such as military combat or sexual or physical assault or abuse.

For two reasons, I get upset when I don’t think people believe me or understand how freaked out I get at the mere thought of a power outage, let alone an extended one. The first reason is that I generally like to feel known and understood and believed. In this instance, I worry that people don’t believe me and instead think I’m exaggerating or hopping on some “disorder-of-the-month club” bandwagon or something. The second reason is that I think that if people knew that by “PTSD” I truly mean PTSD, they might be better able to respond to my distress in ways I find helpful, whereas there are very few people in my life who know how to do that now.

So, let me explain a bit about PTSD and why my situation is, in fact, actual PTSD, and why I think PTSD is especially rampant in the disability community. Then, I will offer some suggestions of things to say or do that I find comforting or supportive. If you’d like more information on PTSD, in general, this is a pretty comprehensive PTSD website, which provides this definition of PTSD:

Post-traumatic stress disorder (PTSD) is . . . an anxiety disorder and usually develops as a result of a terribly frightening, life-threatening, or otherwise highly unsafe experience. PTSD sufferers re-experience the traumatic event or events in some way, tend to avoid places, people, or other things that remind them of the event (avoidance), and are exquisitely sensitive to normal life experiences (hyperarousal).

Here is the difference between surviving an extended outage for someone like me, versus for most of the people in my town (who were not traumatized by the ice storm — many people actually said it was fun for them). This is a major difference, in general, between people with disabilities and people who are nondisabled, healthy, and mobile: I cannot escape. I cannot evacuate.

For one thing, aside from wheelchair access, due to my CFIDS/ME and Lyme disease, I need to spend most of my time in a quiet, restful surrounding, lying down in bed. For another, I have multiple chemical sensitivity (MCS), and the only other places that are MCS-accessible are the homes of other people with MCS, and they are as stuck as I am (especially if the also are mobility impaired and otherwise ill).

So, when “Rita,” the computer from my electric company calls to tell me that there might be “widespread power outages” and that “she” is calling me to take steps to get safe because I have medical needs reliant on electricity and should therefore prepare to evacuate, it is really not very fucking helpful. Thanks anyway, Rita.

The other issue is that I can’t do what most people do to weather a storm without power.

Let’s start with heat, shall we? I can’t tolerate wood smoke/wood stoves, gas, propane, or oil. The only heat source I can tolerate is electric. That is why being without power for a week in winter in New England was scary as hell.

Then there’s food. Lot’s of people during the ice storm cooked on wood or gas stoves. Obviously, I can’t do that for the same reasons I can’t use them as heat. Some went out to eat; obviously I can’t do that, either. So, you are probably thinking I should eat non-perishables. Well, that’s a problem because of my food allergies. I’m trying to think of which foods I can eat that don’t have to be refrigerated (until they’re opened). This is what I’ve come up with:

  • Rice milk
  • Hemp milk
  • Apples
  • Rice protein powder
  • Semi-perishables like brown rice bread, cucumbers, and lettuce
  • Organic plain cocoa powder
  • Olive oil

That’s pretty much all I can think of at the moment.

Then there’s water. Because when the electricity doesn’t work, neither does the water. This is not so terrific in general, as I know from living with non-flushing toilets for a week, but it’s also a problem not to be able to wash my hands when I need to infuse my medication (via my PICC line) or give myself shots, etc. Which reminds me: My intravenous and intramuscular medications need to be kept refrigerated.

Then there are all the things I rely on that use electricity, like air filters and powerchair chargers and book-on-tape machines, etc. I certainly can’t read by candlelight because 1) I can’t read print books, and 2) I can’t use candles.

Another problem is that often, when we lose electricity, we also lose the phone. This is particularly problematic because 1) if I need something — like help, or someone to talk to because I’M FREAKING THE FUCK OUT — I have no way to communicate with the outside world, because I can’t drive, and 2) we don’t have cell reception where I live. Let me repeat that because it seems very hard for urban and suburban people to grasp: No. Cell. Service. No, really. No iPhones or smart phones or texting or any of that shit. I don’t even know how to do any of that.

So, maybe you’re thinking, “But it’s summer, so you’re not in danger of the cold like you were during the ice storm, and Betsy is around, so you’re not by yourself, so why are you freaked out?” People tell me this. They are trying to be helpful. I know they are, but I feel terrible when I hear it because I am translating what they’re saying as, “Sharon, you are a crazy, irrational nut-job. It’s just an outage. It’s summer. Calm down, you drama-queen.”

The problem is that I have PTSD, and PTSD isn’t rational. Rationally, I am aware that it’s summer and that I’m not in danger of freezing to death this time. I’m also aware that, unlike last time, I am able to get out of the bed sometimes. I know these things, but I don’t believe them because there is a part of me that went “Zzzt! Pop!” and broke when I thought I was going to die alone and cold in the dark two years ago. That part views the world like this:

  1. I have electricity. Life is normal. I’m fine.
  2. I don’t have electricity. I’m going to die.

So, how do I know I have PTSD? Well, it started with the triggering event:

Virtually any trauma, defined as an event that is life-threatening or that severely compromises the emotional well-being of an individual or causes intense fear, may cause PTSD. Such events [may] include receiving a life-threatening medical diagnosis, . . exposure to a natural disaster. . . .

It was a natural disaster, and it felt life-threatening to me, but whether it was or not, it definitely caused intense fear and compromised my emotional well-being. And I was already living with life-threatening illness, which certainly didn’t help the situation any.

The following three groups of symptom criteria are required to assign the diagnosis of PTSD:

  • Recurrent re-experiencing of the trauma (for example, troublesome memories, flashbacks that are usually caused by reminders of the traumatic events, recurring nightmares about the trauma and/or dissociative reliving of the trauma)
  • Avoidance to the point of having a phobia of places, people, and experiences that remind the sufferer of the trauma or a general numbing of emotional responsiveness
  • Chronic physical signs of hyperarousal, including sleep problems, trouble concentrating, irritability, anger, poor concentration, blackouts or difficulty remembering things, increased tendency and reaction to being startled, and hypervigilance (excessive watchfulness) to threat

I have a lot more in the latter two categories than in the first one, although, when I’m triggered (if there is a blackout, for sure, or just if someone unexpectedly turns the lights off or if there is a possibility of an outage), I do have some of those symptoms. Mostly, though, I have the numbing, and then most of the things in the third category.

I think the reason this is a hidden issue is that most of the time, I’m not triggered, and even when I am, I’m usually pretty good at hiding it. Whenever there is going to be a weather “event,” I do my best to avoid hearing or reading about it. If people talk about the possibility of an outage, I get extremely anxious. I ask them not to talk about it around me if I can’t get away from them. But more often I play it off by making jokes and changing the subject.

If I absolutely can’t avoid hearing about it — as has been the case with this goddamn hurricane that everyone is tweeting about incessantly — I get flooded with anxiety, don’t sleep, can’t concentrate, lose sensation in my feet, have nightmares, and as a result of all this muscle tension and adrenaline, the next day I am having severe body pain, often immobility issues and migraines. My neurologically and immunologically impaired body does not take kindly to stress. It’s a hallmark of CFIDS/ME — emotional exertion kicks us in the teeth. Now that I have Lyme, any sort of muscle tension is repaid triple-fold.

Recently, we had a power outage that lasted under three hours, but it was at night. So, that meant suddenly it went from “normal” — with my fan blowing and my computer humming and all — to dark and silent. It was warm, there was no danger of my having hypothermia, and it was unlikely the outage would last for several days. Nonetheless, the second that the lights went out, my body was flooded with adrenaline. I couldn’t think. I didn’t know what to do. It took me about half an hour just to figure out how to call the electric company to report the outage. It wasn’t until I called the electric company and heard that my voice sounded weird and that I was having trouble catching my breath that I realized I was hyperventilating.

Barnum put his head on my lap, and I started to calm down, and that’s when I realized that my feet had gone numb and that my heart was pounding, etc. When the lights came back on, I was just flooded with relief — as if someone had poured a bucket of cool water inside me from the top of my head to the tips of my toes.

So, here are some factoids I found interesting from that site on PTSD: women are twice as likely as men to develop PTSD, and non-white people are also more likely to develop PTSD. Two theories as to why are

a tendency for individuals from minority ethnic groups to blame themselves [and to] have less social support.

This made me wonder about if similar issues might be involved for people with disabilities, since we also tend to be socially isolated and to internalize ableist beliefs that we are to blame for our struggles.

I also thought about how it applied to me since the immediate aftermath of the ice storm was that I lost almost all of my sources of emotional support. My best friend stopped speaking to me, one of my other best friends died, my therapist terminated with me, and my relationship with my other best friend — sister of the one who ditched me — became strained and distant. In fact, I had a lengthy nightmare this morning that was basically a replay of the ice storm, except that it was focused on my best friend who ditched me ditching me again. Then Gadget died. It was endless.

And I did blame myself. A lot. People in my life who ditched me made it very clear that the problem was me. They told me I was in crisis all the time, that I was emotionally difficult, etc. Well, yes, I was in crisis a lot because that was the nature of my life with multiple severe illnesses. And yes, some of the diseases that were untreated, or that became worse due to herxing, were making me crazy. I was not myself. So, yes, I was experiencing a lot of neurological damage that affected my moods and behavior, which was not only torturous for me but unpleasant for others.

So, all that is wrapped up in the pain and trauma of the ice storm. Along with guilt and shame that I’m still affected by it. This post is me trying not to judge myself for my suffering.

I said at the beginning that I’d mention some things that help when a weather event or outage is possible or is in progress. I know some of these are contradictory, and I’m not saying these are what would help everyone, but this is what does or doesn’t help me feel calmer, so maybe some of it will be relevant to others, too:

  • Talking about it — unless I bring it up — doesn’t help. It triggers my anxiety. I don’t want to hear that there may be outages or trees down or this or that worrisome thing. I get weather alerts automatically on my computer and from the electric company by phone. That’s plenty.
  • If I tell you I’m anxious, saying, “There’s nothing to be anxious about,” doesn’t diminish my anxiety. I just interpret that as you telling me to shut up, even though I know people say this in an attempt to be supportive. Saying something like, “I can understand how this could be very triggering for you. Is there anything I can do to help you feel less anxious?” would feel better.
  • If I say I’m anxious, even if I don’t “seem” anxious, believe me that I am totally freaked out. When I’m in a state of extreme anxiety, I tend to speak very slowly and quietly because I’m having so much trouble thinking that it’s an effort to string a thought together, let alone express it. However, I have discovered that most people interpret this as me being spaced out or mellow or something. Often, the more anxious I am, the quieter and more still I become. (A lesson from the animal world: It’s not just fight or flight, it’s fight, flight, or freeze; and many animals go with freeze.)
  • Likewise, reasoning with me would seem like it should help — pointing out that it’s not winter, that I’m not alone this time, etc., — but it doesn’t help. This comes back to the fact that there’s something in me that just connects being in the dark, without power, to potential death, and certainly terror and helplessness, regardless of how irrational that is. When I hear someone say, “But it’s not winter,” or “But it’s daytime,” I just feel ashamed that I’m having these irrational feelings. You could try saying, “Is there anything that feels safer now than before that you could focus on?” That might help. I’m not sure.
  • Part of the problem with reminding me what’s different is that I also don’t have a lot of what I had to survive the ice storm. I don’t have Gadget, and my grief feels overwhelming if those two losses/traumas combine. I don’t have my best friends I loved so much who tried to provide assistance from afar, etc. That’s why I think it’s good to focus on what I have now, like Barnum. Barnum helps a lot. For one thing, he’s entertaining. He helps me keep my focus out, which is important. He now has also gotten good at resting his head on my leg when I am anxious. He started doing it tonight, and I hadn’t even cued him. But then I started clicking and treating him for it so he would continue. Here are some adorable pictures of him resting his head on my legs while I wrote this blog:
In the foreground is a black cordless computer keyboard. Sharon's right leg from the knee down is visible, lying on a red comforter. Her left leg is hidden by Barnum with his big, hairy black head, eyes shut, resting on her left knee and thigh, his nose on the edge of the keyboard. His hind end is stretched out behind him on the rest of the bed.

Mm, comfy. (Can I have some cheese now?)

He tried out some different positions. This was the best one:

Similar to the previous picture, except Barnum has stretched his head out so his neck is on Sharon's left knee and his chin is on her right thigh. The only part of Sharon visible is her right knee.

This MUST be cheese-worthy. (No, I'm not eating the keyboard. I gave that up in puppyhood.)

  • If I am able to do training with him, that’s the most therapeutic thing there is, because it requires total mental, physical, and emotional focus and commitment. There is no room for me to obsess about my mortality. Thus, talking about Barnum is usually good. You can ask if I have any plans for things to do with him in the next couple of days (and not even mention the storm).
  • Ask me what is helpful! This is often very helpful. Ask me if I’d like you to distract me. Usually the best thing is for me to focus on other things, to just chat about stuff and keep my mind off The Scary Thing. When I was calmest today was when I was working on my other blog (I’m putting together pages with links to books I’m in) or doing stuff with Barnum or listening to Harry Potter. If you’re someone I talk on the phone with, call me and see if I’m in any shape to chat about something totally frivolous. If you’re a reader here or an email friend, do something similar. Please don’t be offended if I don’t respond. I am using a lot of energy dealing with being anxious, so I’m not responding to emails much right now. I might need to just listen to Harry Potter. The Harry Potter CDs are my wubbies. I know the books by heart. I literally can’t count how many times I’ve listened to them. When in doubt, listen to Harry Potter — that’s my motto. It’s so unrelated to anything in my world, it’s wonderful.
  • Because I tend to deal with my anxiety by trying to pretend that the weather event is not going to happen, I am often caught by surprise when it does, or when we do lose power. Then I freak out that I haven’t set aside water or moved the battery pack into my room or put the number for the electric company in any easy-to-find location. So, asking me, in a low-key way, if I have done these things can be useful. (We have.)
  • Let me know you care, ideally in a positive, low-key way. I got a voicemail today from a dear friend who is also homebound on the East Coast, letting me know she is thinking of me, and passing on a message from a West Coast friend to both of us of “a wish for calm, inside and out.” I thought that was lovely. It helped me focus on the idea of calm weather and a calm internal state, that both were possible.
  • I asked Betsy, if the power goes out, and I’m anxious, to remind me that I have a list of people I can call — with their phone numbers — and things I can do if I do lose power. My therapist helped me come up with it, along with a visualization. It helps me to know I have this list.

So, there it is. Writing this post gave me something to focus on, too.It too me about fifteen hours, on and off.

May you all have calm days and nights now and in the next few days, internally and externally.

– Sharon, the muse of Gadget (Mr. Cool), and Barnum (so calm that he’s asleep now)

Flashback: Of Grief and Relief

I originally wrote this post on January 2, 2010. It’s one of several unpublished posts I wrote in the wake of Gadget’s death. I keep finding these drafts that are basically finished, but for some reason, I didn’t think they were complete at the time. My thinking was so fuzzy back then, I’m not sure what I thought these posts needed.

In this case, the original title, “Admission of Guilt,” suggests a pretty clear reason why I hesitated to post it. I’m glad that I can now grieve Gadget without feeling guilty about the complex feelings I experienced during his last days.

– SW

When the End of the End Doesn’t End

Gadget’s final week was an extension of the previous six months, and the dreams seem to be an extension of what I lived in those end days.

For about four months I fought with my brain, my body, my heart, and my bank account to defeat his cancer. I researched. I cooked. I researched more. I took him for chemotherapy, acupuncture, chiropractic, and Chinese herbs. I pilled him constantly and myself just enough to keep my exhaustion and pain sufficiently at bay to always take him for a walk, to always go with him to chemo, to always make sure he got the right supplements and medications with the right meals. Those were the days of hope, when I thought we would have at least a year, possibly two, maybe three or more.

Then, he took a turn for the worse, and I realized he probably was dying. Next were the weeks it was clear to me he was dying, but not to him. Finally, in the last week or two, he was actively dying, which was like all the months before, but brutally amplified.

Everything was more. More stress and anxiety. More effort to ensure each meal was delicious and totally digestible. More pinnacles of hope and plummets into despair. More pills and monitoring symptoms and needle sticks — all requiring more vigilance around and around and around the clock. More cleaning up messes that smelled of his body shutting down. More desperation to make him as happy as I could with trips to the pond, walks, doggy get-togethers, and to soak up as much joy as I could, myself, in his still being alive because every time we had fun or peace, I knew, “This might be our last time. . . Or this one. . . . Or this one. . . .”

I couldn’t shed months of habits overnight, just because there was no longer any purpose to them.

The first morning after Gadget’s death, I rolled out of bed, adrenaline banging through me, and began checking his status before I even realized he wasn’t there. I was ready: Had I heard gasping? Did I smell vomit? Was it time for pills or fluids?

What I was not ready for each morning was the nothing. Not only wasn’t he on his bed, he wasn’t lying in a cool spot next to the window or on the bathroom tile. He hadn’t wandered off in search of one of my personal care assistants to demand food and attention (not that much demanding had ever been involved — more like just showing up!). But, my PCAs hadn’t arrived yet because I should still have been asleep. There was nobody there. So there was nothing to be done. And I didn’t know what to do with that at all, because for six months, there was always more to do. More to try, more than I could do, more that made no difference in the end.

After taking in the nothing, I’d cry and go back to sleep.

Sleep was very big on my agenda the first few days after Gadget died because, in addition to the insomnia I have as a symptom of my illness, for the previous months, I woke up constantly to care for Gadget. During the days, I spent all my energy on two things: Gadget’s survival, and my survival (in that order). From the moment I woke to the moment I’d literally pass out from exhaustion, I was in the survival struggle.

In fact, for the first 48 hours after Gadget died, I mostly felt relief. I slept. I finally didn’t have to manage anything. I didn’t have to struggle against and fear the worst anymore because the worst had already happened.

Gadget napping on red quilt on couch.
Near the end, we both grabbed sleep whenever we could.

I’m fortunate to be able to admit this. What’s given me the courage is hearing it from other caretakers of a loved one with a long, terminal illness. It’s actually pretty common. However, it’s not an admission everyone wants to hear.

A year ago, I didn’t want to hear it from someone else. On January 6, 2008, Norm, one of my best friends, died after two agonizing years of illness. He often said to me, especially near the end, that he wanted it to be over, that he sometimes felt like it would be a relief to die. This was hard to hear, but I was sympathetic. This was because, along with understanding how it feels to be mired in pain and illness, I was keeping a promise I’d made to him a long time before, though he didn’t know it.

When Norm got sick, I committed to listening to and supporting whatever he felt. My goal was to be unconditionally loving and nonjudgemental. I think it’s the only time in my life I’ve succeeded at that.

Still, I didn’t want him to die. So, when he did, I was shocked and grief-stricken. It was a pure loss, which is what animal bereavement experts say is usually the case when a companion animal dies. They say that our relationships with our animals are usually so entirely positive, without the resentments, grievances, and other negative complications of our human relationships, that the loss is often more painful than a person’s death. I have recently heard from others whose dogs died of cancer that their grief and suffering is worse than when they’d lost a parent, a sibling, or even a child.

Norm was a dog person. He also shared my gallows sense of humor. At his memorial, I said that Norm would appreciate knowing that, to me, his death was as upsetting as if he was a dog.

This was not true for his wife, who also is disabled and with whom I was also friends (though not as close). His death was a terrible loss and a tragedy for both of us, but she had spent two years of physical and emotional agony taking care of him. I was protected by the distance of the phone line. His death for me was pure sadness. For her, it was also a deliverance: a release from the horrors of watching him suffer brutally for so long, as well as a chance to take care of herself again and to regain some of the life she’d lost before he got sick. I couldn’t stand hearing this from her. Her grief was complicated, and mine was straightforward. I didn’t want there to be an “upside” to my friend’s death.

Since Gadget’s death, I have a lot more empathy for what my friend was feeling last year. I have been met with silence, confusion, and outright denials when I mention the part clemency has played in Gadget’s death.

When he was dying, I went to an online anticipatory grief support group. When I admitted, with some guilt, “Part of me just wants it to be over.”

The host said, “That’s because you don’t want to see him suffer. It’s a completely unselfish feeling.”

I said, no, it wasn’t entirely unselfish. Seeing him suffer was horrible, and that was certainly part of it. But, I said, I was suffering too. I was exhausted, a physical and emotional wreck. I’d dug deeply into savings that I live on. The toll was enormous and seemingly endless. I wanted it to be over for me, too. I didn’t want him to be dead — not truly dead — but I also wanted it to be over.

The host continued to maintain that my only thoughts were of Gadget’s needs. She refused to hear the part of me that was saying, “I can’t take this anymore.” I didn’t mention it again.

Of course, when it was “over” — what we think of as over, his body buried in the ground — it was not, is still not, remotely over. I got my two nights of sleep, but they were laced with nightmares for far longer. And the grief, in one form or another, goes on and on. I’ve been told that in some ways, it will never be over, a thought that is depressing, exhausting, and strangely comforting. I guess because it means Gadget will always be in my life, in some form, even when that’s only in grief. . . .

I reach out for him to feel where his fur should be. I look to the foot of the bed, where his head should be lolling over the side. I listen for his snore, rumbling over the white noise of the air filter. I glance instinctively to the door, the light switch, the pillow I’ve dropped on the floor, for him to shut the door, turn off the light, pass me the pillow.

Gadget at a distance in a large pond.
At times, he feels beyond my mind’s reach.

For six months, I applied every life-affirming “treatment” I could. I didn’t just take him to chemotherapy every week, even when I could barely leave my bed the rest of the time. I didn’t only research and dispense herbs and supplements, create a special cancer-fighting diet tailored to his food allergies, consult a multitude of veterinarians and read multiple books on canine cancer. I took him on special walks — varied our routes, went to his favorite destinations (and pretty well killed my powerchair in the process). Even teaching him new service skills and relying more on his assistance felt like a blow against cancer, as if I was tethering him to life that much more tightly. How could such a necessary bond ever be broken?

More importantly, I tell myself that I still exist and matter. After more than eight years living as a “we,” a partner, an interdependent unit, an extension of another, I’ve become disembodied. The only thing that has ever been mine alone is writing. No matter how many people offer critique, proof or edit, type or transcribe, publish (or reject) a piece of writing, it is still a solitary act.

I was a writer before Gadget. After he entered my life, I often wrote to escape the demands of his training and exhausting exuberance. As the subject of some of my humor columns, I transformed scary, frustrating, or painful events with a wild young rescue into emotional release — and paychecks. Even when he curled up under my desk as I typed, the true connections happened in my mind. Writing has always been where I find myself, whether I want to or not.

– Sharon, the muse of Gadget, in the days before Barnum

An Alert Pup!

Even when Barnum was a tiny puppy, I knew he had great potential for sound alert. He’s very sensitive to, and inquisitive about, noises. He also seems to have terrific hearing, which is a nice change of pace. (Gadget, I believe, was hard of hearing, and I think Jersey’s hearing was fine, but she just didn’t care much about sounds that were not food related.)

Why, as a hearing person, do I want Barnum to respond to certain sounds?

  • To alert me to sounds, such as timers and alarms, that I don’t hear because I’ve fallen asleep;
  • To alert me to sounds that I’ve forgotten I heard (timers and alarms), because of my cognitive impairment and memory problems; and
  • To make him faster and more effective at retrieving the telephone when it is ringing, and I can’t get to it.

My plan was to train Barnum to perform the sound alerts that Gadget did, primarily alerting me to the stove timer going off. This was a very difficult skill for Gadget to master; it took several months of intensive training. Nonetheless, I’ve been confident that Barnum would learn this alert more solidly and quickly because he is much more attuned to sounds than Gadget was, and because I am a better trainer now.

I trained Gadget to alert to the stove timer as part of my effort to stop burning my meals to cinders.

However, a couple of years later, this skill became useful for an unexpected reason: I got Lyme disease, and for many months, I had to take antibiotics at 12-hour intervals. It is very rare for me to be awake and coherent for both ends of a 12-hour shift, every day.

Thus, Gadget became my medicine reminder. After taking my dose, I’d reset the timer for 12 hours. If I happened to be asleep when it went off, Gadget would hear it, open my bedroom door, run to get his orange squeaky “alert balls” and bring one back and wake me up with it. (You can see a [poor] demonstration of this skill in the second video in this previous post.)

Barnum Takes the (Sound) Stage

In a very laid-back way, I have been encouraging Barnum to pay attention to sounds ever since he was a little puppy. The sounds I’ve focused on are the ring of the cordless phone and the beeping of two timers: the stove timer and my digital “personal timer” (which lives on my overbed table, and which I use to remind myself of phone appointments or other happenings I’m likely to forget).

By “laid back,” I mean that I hadn’t set up training sessions to work on this. I just took advantage of opportunities that presented themselves (also known as “capturing,” in clicker parlance). In other words, if Barnum and I happened to be near the cordless phone when it rang, I’d  act excited, and say, “It’s the phone!” Then I’d toss him a treat. If he oriented to the phone (i.e., if he looked at or moved toward the phone), that definitely earned a click/treat.

I used the same approach with the kitchen timer.

I didn’t really consider this training; more like “pre-training.” My primary goal was to prevent Barnum from becoming so acclimated to these sounds that he stopped noticing them when the “real” training began.

A few weeks ago, because it was convenient, I decided to get slightly more proactive with building a foundation for sound alerts. Whenever my personal timer went off, I’d toss Barnum a high-value treat. He soon was leaping up and running over whenever he heard my timer, and I thought, “Huh, I should probably do something useful with this behavior.”

This urge was strengthened when we were in the living room a couple of weeks ago, and the phone rang. Barnum turned toward the phone and barked at it! I never taught him to do that. I was pleased and impressed.

Barnum Responds to Infusion Pump Alarm!

That’s when I realized I could — and should — train Barnum to be my infusion-pump alarm back-up.

Those of you with chronic Lyme disease or who have had chemotherapy or other long-term intravenous medication are probably familiar with the ins and outs of infusion pumps. For those who aren’t, here’s a crash course in home-infusion therapy, and how a service dog can be of use.

First, there’s the PICC line. PICC stands for “peripherally inserted central catheter.” It’s a flexible little tube that goes inside a vein from your upper arm to your heart, delivering medications into your bloodstream much more efficiently than by any other method. (Here’s a site on PICCs if you want more information.)

Closeup of Sharons arm with PICC line coming out of biceps

I know it looks weird, but it doesn't hurt, and I'm quite used to it after 18 months.

[Photo description: Sharon’s inner upper arm and elbow with PICC line and dressing. The PICC line is a very thin white plastic tube coming out of a round “biopatch” — which looks like a nickel-sized styrofoam disk — in Sharon’s biceps. The biopatch covers the entry site of the line. Several steri-strips hold the biopatch and line in place. A hypoallergenic clear sterile dressing that looks like a piece of plastic covers the PICC area, with two pieces of hypoallergenic medical tape holding down the dressing. The line emerges from under the dressing to a red clasp, which is opened when flushing or infusing. A white plastic cap connects the line to a clear extension tube, which is a port into which syringes of medication or saline can be inserted for infusing or flushing.]

The above photo description tells you the rest of what you need to know (or maybe more than you wanted to know!). The only unusual thing others with PICCs might notice is that this is not a typical PICC dressing. Most of the stuff normally used for cleaning and dressing PICC sites makes my skin erupt and blister in a nasty way. (Thanks, MCS!)

At any rate, I do two infusions a day, 12 hours apart.

To do an infusion, I have to clean the port with a disinfectant, then flush my line with saline (the smaller white syringe in the picture below). Then I hook up an extension tube between the antibiotic and my PICC line. Infusing the antibiotic (the really big syringe attached to the pump in the picture below) takes about 45 minutes. The pump ensures that all the medicine goes in at a slow, steady rate.

When the tube of antibiotic is empty, the pump alarm sounds, which is a loud, grating, “Beep, beep, beep,” and a red light flashes. The I unhook my line, clean it, and flush it with saline again, and finally with heparin (the yellow syringe below).

Infusion Pump with extension tubing, saline flush, heparin flush

The red light on the pump indicates the alarm is going off, and it's time to unhook the extension tubing and flush my PICC line.

[Photo description: two 12 millilitre syringes, without needles, one yellow, one white, lie on a red background next to a 60 millilitre syringe which is attached to a rectangular, brown Bard pump, about nine inches long and three inches wide. Extension tubing comes out of the big syringe. A red light is on at the bottom of the pump, next to the word, “Alarm.”]

Rather, that’s what’s supposed to happen, and most of the time, it does. However, on occasion, I fall asleep while I’m infusing. When this occurs, I wake up many hours later, my line still connected to the pump, the flushes laying nearby, unused. Tellingly, the pump switch has magically been moved from “Alarm” to “Off”!

Actually, I’m pretty sure no magic is involved. The only reasonable explanation is that I wake up just enough to switch the alarm off and then fall immediately back to asleep. I have no idea how long the pump is alarming before I turn it off in my mostly unconscious state. In the morning, I almost never remember waking up and turning off the alarm.

This is less than ideal! The line should really be flushed immediately after infusing. Also, if I were to ever startle awake and move quickly, I could potentially pull the line out of place (particularly because my dressing does not allow for as secure an attachment as is standard practice for PICCs).

Sharon Falls Asleep while Infusing

Exciting reenactment: I fall asleep while infusing.

[Photo description: Sharon lies asleep in bed, propped up with pillows. She wears gray sweatpants and a purple sweatshirt over a pink nightshirt. On her left side the sweatshirt has been pulled up to expose her upper arm, where the PICC dressing and tubing are visible, attached by a long, thin, clear line to the infusion pump, which rests against Sharon’s thigh. On her legs, the saline and heparin flushes lie, waiting to be used after the infusion is over.]

I realized that a really useful skill, and one that would probably not be hard to teach, would be to train Barnum to wake me when my infusion pump goes off.

I started out with classical conditioning, just tossing Barnum one of his favorite treats each time the alarm went off. He made the connection very quickly — within a few days.

Then I moved to operant conditioning, shaping Barnum’s behavior. Once he showed any reaction to the pump alarm, I clicked for the response. As always when shaping, I started with whatever small behavior he offered, such as cocking his ear toward the sound, or turning his head toward it, or just looking up from a nap. Eventually I withheld the click until he was trotting over.

My plan had been to keep upping the ante to get him to jump on the bed, nudge me, etc., until I woke and reward him.

Sunday morning was the first, and only, time I cued a behavior — jumping on the bed (“Paws up!”) — before clicking and tossing the treat.

That night, as usual, I flushed with saline, connected the pump and began infusing. I had my clicker and Barnum’s special treat ready for when the alarm went off. About half an hour into the infusion, I got the suddenly sleepy, struggling-to-stay-awake feeling. I thought that knowing I had to be awake to capture and click Barnum’s response to the alarm would keep me awake.

I was dreaming — literally!

The next thing I knew, I was awakened. All was confusion. The bed was moving, and I didn’t know why. There was a strange noise.

I struggled to orient myself.

The first thing that registered was that Barnum was on my bed, panting and smiling at me. Then, the strange sound resolved, as well — it was the infusion pump alarm.

Amazing dog! Barnum had jumped on the bed of his own accord and woken me when the alarm went off!

I praised him as I scrambled for the clicker, and tossed him his prized treat. I continued to praise effusively, tossing a large handful of other treats I happened to have in my bed.

Barnum "Paws Up" on Bed
I’m here! Wake up! I want my treat!
[Photo description: Barnum, a shaggy black brindle bouvier, with only one eye peeking out from under his hair, has jumped partway onto the bed, with his front legs and chest resting on a dark raspberry-colored comforter. He looks relaxed and slightly expectant. Sharon’s powerchair is visible in the background.]

I was so excited! With Gadget, I had had to spend weeks just on feigning sleep during timer-alert sessions. I will plan to train this way with Barnum — pretending to be asleep when the alarm goes off. He’ll have to really work for that treat by jumping on the bed, nudging me, licking me, etc.

However, I had thought that if I actually did fall asleep while Barnum was at this stage of training, he would have popped up from the floor, looked for his treat, and when he didn’t get it — when I just lay there, conked out — he would give up and go back to bed.

Instead, Barnum made a mental leap that required not just thinking (i.e., problem solving), but self-confidence, too.

I believe our recent focus on lots of free-shaping sessions (as I described in a previous post) led to this breakthrough.

Now, saying that Barnum is a service-dog-in-training feels more legitimate. The pay-off for our training is no longer just fun or incremental steps in increased obedience and communication; the real-world application of practical service skills is becoming apparent.

Barnum’s increased exuberance and eagerness to offer behavior in the absence of a cue or other encouragement from me is thrilling!

An Alert Pup . . . and a Groggy Human

Any assistance dog partner will tell you that there are two members of the team, and both have to do their jobs. Sunday night, Barnum rose to the occasion, while I fell asleep on the job!

After I shut off the alarm and finished fussing over Barnum, I turned my attention to unwrapping my saline and heparin flushes and looking for my sterile wipes and line caps — the supplies necessary to finish the infusion process. . . . The next thing I knew, it was morning, my left arm was still out of my shirt sleeve, and my PICC line was stretched down to the pump!

These are the times when both the pros and cons of being a disabled person training my own service dog come into sharp focus.

On the down side, I had underestimated my functionality. I had thought that being awakened by Barnum, and being forced to interact with him, would keep me lively enough to finish the infusion process. I had not factored in how my cognitive impairment (in this case, memory and concentration issues) would intersect with my sleep disorders. I had not given enough weight to how hard it is for me to “stay on task” when my body and brain switch from “nothing you do will allow you to fall asleep” to “nothing you do will allow you to stay awake”!

On the upside, I now know that I have to build in back-up systems after the initial wake-up, to keep me awake, or to wake me repeatedly, until I finish flushing my line. This is perhaps the biggest bonus of partner-training: I can trouble-shoot and adjust skills as we go along, because nobody knows my disabilities better than I do.

Another bonus to doing all this practice with him is that I am also training myself.

This was the unexpected perk to training Gadget to alert me to the oven timer. People who don’t have brain injury often don’t understand that their suggestions of seemingly straightforward solutions to memory problems, such as “write a reminder note” or “set a timer” require the cognitively impaired person to remember to write the note or set the timer, and also to remember where the note is, to remember what the timer going off means, or to remember to jump up the instant the timer goes off and go do the thing the timer is reminding one of. I write notes all the time to remind myself of what to do, and then I misplace and forget about the existence of the note!

Indeed, before training the memory alert with Gadget, the biggest impediments to using a timer to prevent me from burning my food had been:

  1. Forgetting to set the timer in the first place;
  2. If I did set the timer, not responding the moment the timer went off (e.g., if I was writing an email, I’d think, “I’ll just finish this sentence,” and then forget that the timer ever went off) and keep on keyboarding; and
  3. If I did get up to go to the stove as soon as I heard the timer, I usually became distracted by something on the way (even though the stove was only a few feet from my desk), and forget the original reason for getting up.

However, when I worked for months on training a complex timer alert with Gadget, I spent a lot of time focused on setting the timer, remembering to keep clicker and treats handy to respond when the timer went off, etc.  It became a form of cognitive-behavioral therapy for me. The end result was that I was much more likely to remember to set the timer when I put something on to cook, and I was also more likely to respond to it when it went off, sometimes because Gadget alerted me, but sometimes simply because my mind was better trained to hone in on the timer.

Thus, I’ve decided that the best way to address this added dimension of the infusion pump alarm with Barnum is to train us both to following this protocol:

  1. When the pump goes off, Barnum bugs me (jumps on the bed, nudges me, licks me, etc.), until I wake up.
  2. The instant I wake up, I hit my personal timer (set for six or seven minutes).
  3. I turn off the infusion alarm, and reward Barnum for having alerted me.
  4. I attempt to stay awake to unhook, infuse, and put things away.
  5. However, if I do fall asleep before I’m done, the other timer will go off, and Barnum will alert to that, leading us to repeat steps one through four.
  6. If I do get my line taken care of, and the timer goes off before I’m done, I reward Barnum for alerting to it anyway.

In other words, I’ve had to add a step. Or a step that repeats itself. So, it’s really just more of the same. Which is sort of the essence of clicker training: once you build a foundation, it’s all variations on a theme, requiring flexibility, creativity, and knowing the rules by which you’re playing.

This is also the essence of a service dog partnership.

And of life.

I’m so proud of my dog! And I’m not feeling too bad about myself, either. Nice change of pace.

– Sharon, the muse of Gadget (I’d have done better with the timer alert if you’d trained it better!), and Barnum (What’s that sound?!) Medical-alert-dog-in-the-making!

How I Sleep (Or Don’t): Powerless/In the Dark

Today’s post is for the December edition of the Disability Blog Carnival. This month’s host is Dave Hingsburger at Rolling Around in My Head.

The carnival is scheduled to go up on December 21 (the longest night of the year, for those of us in the Northern Hemisphere). The Disability Blog Carnival always makes for interesting reading, so do check it out.

Dave’s topic, and attached metaphors, are beautiful and inspiring. Here is a tidbit:

The theme is ‘dark nights of the soul and what gets you through them’ … I’d like stories and posts about how you’ve survived those times when it was ‘darkest before the dawn’.

A couple of weeks ago, I posted the first part of this series,[1] about how I was sleeping a year ago, when Gadget was sick, then dying, then gone. Most of it was written, but not published, in February, when it was all still very fresh. The time it describes is definitely one of the “long, dark nights of the soul.”

I have sleep disturbances and insomnia from multiple illnesses; sleep issues have been part of my life since 1995. However, there are definite “up” periods and “down” periods. Insomnia-wise, some times are worse than others. The last two years have been a long stretch of “worse.”

Until I started writing today’s blog, I didn’t realize why my sleep has been particularly bad the last couple of years, and especially very recently.

Maybe people who aren’t as forgetful and confused about dates and times as I am would have figured it out — even seen it coming — but the cause seems to have been the “slumbering giant” in my consciousness.

Two years ago today, December 12,[2] 2008, The Northeast Ice Storm hit. The weight of the iced trees snapped power- and phone-lines like dental floss. Even cell-phone towers came down.

powerline_ice

I never saw the damage, I just lived its effects.

Due to my disabilities,[3] I was stranded in my house (in my bed, actually), unable to evacuate, for a week.

A week without power: no lights, no phone, no water, no internet, no plumbing, no heat.

A friend with the same disabilities as I have, was even more severely affected by the storm, ending up in the hospital — an experience from which she has yet to recover.

After it was all over, my friend described the beautiful and surreal landscape she saw through the ambulance windows. She also emailed me a picture of herself holding up a newspaper from her hospital bed. The huge headline reads, “Powerless in the Hilltowns.” That pretty much summed it up.

Ice storm trees - photo by Judy Stalus

An example of the dazzling landscape many described. Even now, though I see the beauty, I'm disconnected from the magic of such images; they evoke anxiety, not enjoyment.

[Photograph by Judy Stalus. Used with permission.]

Those were longer, darker nights than I’d ever known. I wrote out my will by flashlight in case I didn’t survive.

What got me through, in addition to my PCAs, my partner, Betsy, and my (now former) best friend with whom Betsy stayed, was “capital-G”-Gadget — my service dog and love of my life — and a lot of “lower-case-G” gadgets:

  • My book on tape machine
  • My iPod
  • My flashlights
  • My TTY[4]

Wearing my warmest clothes, covered in all of the blankets in the house, I kept them all within reach.

Little things became hugely important, such as batteries.

I turned a flashlight on as soon as it got dark. I left it on until it was light, regardless of whether I was awake or asleep. In addition to the flashlight that was on, I kept a second one, with fresh batteries, at hand. When the first one grew dim, I’d turn on the second, then replace the spent batteries of the first.

When my talking-book machine’s or TTY’s batteries lost their charge, I panicked. I’d lie there, obsessing over when Betsy would be able to come and take it away to recharge it, and if I’d get it back before dark fell again.

During the day, I limited how much “juice” I used with anything that ran on batteries. I was very careful never to expend the charge on more than one device at a time. At night, I doled out the time with my book machine or iPod, forcing myself to take breaks to make them last longer.

Although, due to sound sensitivity from Lyme disease, I have not usually been able to tolerate music in the last few years, there was one song I relied on during those too-quiet nights.

I’ve never admitted this to anyone before, except Betsy: the Beatles’ song “Let It Be,” helped me get through. I listened to it at increasing volume, the ear buds vibrating, over and over. When the iPod died, sometimes I’d just hum it and cry.

Why does relying on “Let It Be” feel like such a dirty little secret? Partly because I’m Jewish, and the song, if you don’t know much about Paul McCartney, seems to have a very Christian tone.[5] Partly because finding sustenance in a song, especially a pop song — especially a Beatles song — seemed such a cliché. (But — “Whatever gets you through the night, it’s alright” — isn’t it?)

Honestly, in the middle of that seemingly endless night, being Jewish, having no connection to “Mother Mary” — none of that mattered. It’s pretty much a Buddhist concept, letting it be, though it seems like all religions have some form of “turning it over.” When you’re powerless, there’s really nothing else you can do but turn it over, let it be.

Unfortunately, life didn’t get better after the emergency ended. It got worse, severely and quickly.

Norman_Picture

My dear friend, mentor, and colleague, activist Norman Meldrum (with Beatrix Underfoote). Norm died January 6, 2009.

Within three weeks of the storm, as I struggled with the PTSD it had caused, one of my best friends died, my best (and only nondisabled) friend ended our friendship in a nasty way, and my therapist terminated with me (largely because she refused to get a TTY).

A few months later, Gadget, my service dog, was diagnosed with cancer. Then I lost more friends — some to death, some to abandonment — then Gadget, until it felt like I was pared down to a numb nothingness.

I think the piling up of too much loss and trauma in a short period explains why my sleep has been particularly bad for two years.

It’s not just the chemical injury, chronic fatigue syndrome, and tick-borne infections interfering with my body and brain’s sleep cycles — though that certainly is enough. At a deeper level, it’s also that part of me is afraid to go to sleep because the literal and figurative darkness and stillness of night and sleep are too reminiscent of the outage.

Indeed, I can’t tolerate total darkness, or true quiet, now. At night, the sound of the air filters blowing and freezer humming, the shine of the LED lights of my clock, and the glow of my sleeping laptop give me comfort.

If there’s an outage, even during daylight — even during the summer — I panic. I never know how long it will last. I now keep lots of batteries, along with glow-in-the-dark flashlights, mylar blankets, and hand- and foot-warmers, next to my bed. For a long time after the storm, I kept a flashlight in my bed.

Lately, my sleep debt accrues with every day.

It started in November, with the anniversary of Gadget’s death. Grief hit me hard, kept me awake, dragged me to sleep during groggy afternoons, then broke me open again when I should have been sleeping.

However, even as the grief recedes, I continue not to sleep. In fact, as much as I long for sleep, I keep fighting to stay awake. It took me a long time to become aware that I was doing this. After all, if I’m desperate for sleep, why would I want to stay awake until dawn?

Norm, Gadg, and me

A happier time: Gadget and I meet Norm in Maine for the reading of my work he organized.

I now realize that it’s because some part of me recognizes these short days as the same natural patterns that occurred during the power outage. That wisp of panic urges, “Keep the lights on. Don’t stop working at the computer. Write; make sure people know you once existed. Live through the night.”

When gray light starts seeping through the curtains, I feel my body relax and begin to give way to sleep.

Of course it’s not a good coping mechanism. Sleep deprivation drives up my pain in a very predictable manner, which interferes with all other forms of functioning: speech, movement, thought.

Lack of sleep weakens my immune system, which is under the massive burden of fighting multiple infections, in addition to being upregulated for two decades, overreacting to foods and chemicals. Not sleeping also brings a host of little irritations: grouchiness, (worse-than-usual) cognitive problems, emotional brittleness, a continual buzzing in my head, and dry, itchy eyes, and on and on.

Nevertheless, there are times when I make peace with the insomnia, when I can look into the teeth of a long night of wakefulness with equanimity, even eagerness.

  • When I’m feeling antisocial or my moods are being affected by “the bugs,” and I think it’s best for all involved if our interaction is kept to a minimum. (This works even better if I can manage to sleep when others are awake, too.)
  • When I’ve gotten sleep during the day, and I know I won’t be able to fall asleep anyway, so why bother trying?
  • When I can write, which has been such a rarity for so long that I will give up almost anything to have that part of me back. (Especially since some of my best or most successful pieces were written between 2:00 and 5:00 AM.)
  • When I know I’ll have to wake up early anyway, so there doesn’t seem much point after a while in catching those one or two hours of shut-eye.
  • When Barnum has both an appetite and an attention span, so I opt to train instead of sleep.
  • When I’m hungry, which keeps me awake, so I distract myself until someone can make me a meal.
  • When I have to pee, which keeps me awake, so I distract myself until I can get to the bathroom.
  • When I’m in too much pain, which keeps me awake, so I just lie still and wait for the painkillers to work.
  • When I’m writing a blog that helps me make sense of it all.

Peace.

-Sharon, the muse of Gadget, and Barnum (snoring away)

Footnotes:
[1.] Originally I planned to write two posts about sleep, but working on this post took me in an unexpected direction, creating a third piece. Since I seem to have a lot to say about what underlies sleep — or lack of sleep — in my life I’ve decided to turn “How I Sleep (or Don’t)” into an ongoing series. Look for other new series, as well. (I’ll also pick up the thread on some I’ve dropped, such as Barnum’s training logs — lots of developments!). Back to post.

[2.] I started writing this post a few days ago. I actually do know today is not the twelfth. Back to post.

[3.] CFIDS and Lyme made me too sick to be moved, but the real barrier was MCS, which meant that no shelters — neither the homes of friends nor disaster shelters, such as fire stations, were accessible to me. In fact, partway through the crisis, I located a friend who lived nearby who also has MCS and CFIDS, who was hypothermic and desperate, alone in her home. She stayed in my bedroom with me until her power was restored. Back to post.

[4.] Even though there was no phone service for most of that time, I used the TTY to communicate when it was too dim for Betsy or my PCAs to see my lips, gestures, communication board, or signs. Back to post.

[5.] During the time of the outage, I didn’t know that the “Mother Mary” in the song refers to McCartney’s mother, Mary, who died when he was a boy. Back to post.

How I Sleep (Or Don’t) – A List, Part 1

Recently I looked up the topic for the December edition of the Disability Blog Carnival and discovered that it related to sleep.

“Hm,” I thought. “Didn’t I write something about sleep at some point?”

I searched all my blog posts (published and draft form) using the keyword “sleep,” and discovered this blog — in draft (unpublished) form. I wrote it the second week of February 2010, three months after my service dog, Gadget, died, and two weeks before Barnum, my puppy, arrived. I don’t know why I didn’t post it then, because it was pretty much done.

Actually, I do have some idea, now. I recently read a list of signs and symptoms of grief, and a big one was inability to focus or to finish simple projects. That’s been happening to me for a year, and I’ve been feeling guilty about it, wondering what the  heck was wrong with me that I couldn’t function even though, physically, I’m overall doing better. Now I realize it was probably the grief and not necessarily under my control.

Now I’m having grief-induced inability to sleep because of the anniversary of Gadget’s death, and another recent loss unrelated to dogs, which I will post about . . . eventually.

Of course, my sleep changed drastically once a puppy arrived on the scene. There was the oh-so-fun sleep deprivation due to puppy care, which I don’t think I documented — possibly due to being too busy and sleep deprived.

Reading this post now feels so strange. There’s so much I’d forgotten, or maybe blocked out. Reading about it brings it all back so clearly and painfully, like the night Gadget vomited all over the house. I can smell it when I read it. This might seem like a strange thing to say, but I’m glad I wrote about it and saved it, because that was a critical turning point in Gadget’s life and death.

It’s important for me to remember what it was like then so I can better understand who I am now. Also, every piece of memory of Gadget’s life is precious to me, even the bad ones.

Of course, I’m compelled to write another post about how I’m sleeping these days, which I have started. . . But who knows when I’ll finish? Hopefully in time to submit it to the carnival. Meanwhile, here’s a chronology of how I slept — or didn’t — in the months, weeks and days before Gadget died, and then after.

February 13, 2010

Recently, Andrea Martin of It’s Time to Get Over How Fragile You Are told me that she often posts lists, because she likes to read lists, herself. I agree. Lists are soothing. They are a way to organize the world. I’d already started another post that was essentially a list, and now I feel I have permission to write more.

I’ve had insomnia since I got myalgic encephalomyelitis (ME)/chronic fatigue immune dysfunction syndrome (CFIDS) in 1995, and since then, there have been variations on that theme, such as an even more extreme sleep schedule caused by chronic Lyme disease, which led some friends and I to call ourselves “The Vampire Girls.” Yes, I’m a vampirette.

Gadget’s dying and death caused further sleep changes. Here they are.

Gadget Is Sick, but Not Dying

  • I go to sleep after massaging him, loving him up, pilling him.
  • I wake up to pee throughout the night and morning (because I go to sleep late and wake up late), and every time, I check on him, pat him, give him some supplements or medications.
  • If I can, I go back to sleep.
  • If I can’t, I rest, take supplements and medications, and try to get myself as functional as possible to be able to take him for a walk.
  • If it looks like it might rain, I try to get a weather forecast to take him for a walk before the rain, because powerchair electronics can get fried by rain, and Gadget doesn’t like thunder.
  • I get between five and seven hours of sleep. Since I need ten to function decently, I build up a sleep debt.

    Gadget lies on hardwood floor

    A cool spot on the floor.

Gadget Is Going Downhill

  • I give him pills on at one- or two-hour-interval schedule all day, every day.
  • I snuggle him, cry on him, rub his ears, tell him it will be okay, we will get through this.
  • Eventually, either he or I decides he should get off the bed. When he decides to get off, it’s because he feels hot all the time now, and he prefers to lie on the cool floor, by himself. I ask him to get off when I can’t stand the (physical) pain of him touching me or moving the bed anymore.
  • I stay up trying to eat or take meds or write my PCA to-do lists for the next day until I literally pass out — see below — because there is so much to do to take care of Gadget, I don’t get to the other stuff.
  • I can’t turn my mind off. But my body takes over, and I lose consciousness propped up, pen or water or medication or food in hand or on my lap, glasses on my nose.
  • When I wake up, I’m confused. Why am I sitting in a wet spot? What time is it? Why is there food on my legs?
  • Once the confusion passes and I realize I passed out from exhaustion again, spilling my water bottle, dinner, pills, etcetera. I clean myself up and check on Gadget. If it’s a good time, I give him a supplement or medication.
  • I put my hand on his heart to feel it beating and reassure myself.
  • I sleep less than six hours a night.
Gadget lies on the couch with his head on Sharon's knee

We're tired (but I try to hide it for the camera).

Gadget Is Definitely Dying

  • I do most of the above, except that everything gets harder as hospice progresses.
  • I give him pills on a one- or two-hour-interval schedule all day, every day.
  • I snuggle him, cry on him, rub his ears, tell him it will be okay and cry because I know it won’t be.
  • He gets off the bed before I want him to.
  • Sometimes I go to lie with him on the floor, but that interferes with the coolness he has sought of lying alone on the floor (no longer on one of his dog beds), so he gets up to move to a cooler spot.
  • If he wants something I’m eating before I go to sleep, I invite him on the bed and let him finish my plate. For once in my life, I don’t have much appetite anyway.
  • I still pass out trying to deal with the things I couldn’t get to because all my energy has gone to Gadget.
  • I wake up multiple times a night to check on him (and to pee, and to put away or clean up whatever has spilled or was perched on me when I lost consciousness).
  • Near the end, he sometimes vomits during the night. In the beginning, I leap out of bed at the first sound to move his or my bedding out of the way and to clean up.
  • Later, I am too sick. One night he vomits at least twice that I know of — it is the smell that wakes me — but I’m so exhausted, I literally can’t move to clean it up. I check that he’s okay and go back to sleep. My morning PCA tells me he has vomited all over the house. This is a few days before the end.
  • I add anti-nausea shots to his routine, and he feels better. He eats again. He doesn’t throw up.
  • I still check for vomit every morning.
  • I sleep two, three, five, eight hours. Sometimes, if Gadget’s most-loved PCA is here, I can nap an hour or two during her shift. Normally, I’m completely unable to nap.
  • At the end, the nights are bizarre. Two nights in a row, he wants to go out at 2:00 in the morning. I go out with him, and he wanders to the edge of the yard. I open the gate, and we go for a meandering walk. I’m wearing slippers and no coat.
  • The last night, it is well below freezing. Gadget is always hot now, and he wades into a pool by the side of the road, breaking through the layer of ice to get to the water. Then he can’t get out. I get in to help him, my leg going numb, and I am stuck, too. I have believed the stories about mothers lifting cars off their infants. I believe my body will do anything I require to save Gadget. Betsy comes looking for us and hauls us both out of the water. There is more to this story, but I will tell it another time.
Gadget in his reflective orange vest, in the water up to his armpits

At the end, even in frigid weather, he waded in up to his armpits.

After Gadget’s Death

  • The first two nights after Gadget dies, I fall asleep, and sleep deeply, for the first time in months.
  • Then, the death dreams start.
  • Eventually, those fade.
  • I awake looking for him every day.
  • Sometimes I wake up crying for him. Then that fades.
  • Eventually I only look for him sometimes. When he’s not there, I feel a weak blow of sadness, then I distract myself.
  • I stay up much too late, even though I don’t have a good excuse anymore.
  • I can’t bear to go to sleep, because the room is so alone and empty.
  • Not just the room: I am alone and empty. There should be a Gadget here, and there isn’t, and I keep putting off sleep because my day feels unfinished — there was no goodnight massage, no chat or murmurs, no hand on his moving chest.
  • The room is too quiet, all the time. There is no breathing or snoring or barking. There is no sound of the door handle turning at 10:00 AM when Gadget’s favorite PCA arrives. She just arrives, and I sleep through it, until she enters the room, and then because of the too-quietness, her tiniest noise wakes me.
  • I notice the empty, and it makes me fitful.
  • I start napping again. I get migraines, or I’m just exhausted, and I go to sleep for a couple of hours. I wake up at the time a reasonable person would go to sleep (11:00 PM, 1:00 AM, 2:00 AM) and then I’m awake till dawn.
  • Someone from the job I left because I was too sick and grief-stricken to function, harasses me by email and phone. I wish I had my protective, loud, lion-heart in our den.
Sharon asleep surrounded by water bottles, computer, etc.

I pass out with my stuff around/on/under me

When I Cry

  • Normally I don’t cry, but when I do, it’s at night, before sleep.
  • I like to be alone to cry.
  • I feel closer to Gadget when I’m alone, because I see him, and there is nobody who can get in the way of my vision of him.
  • Tonight, I fell asleep at 9:00 PM, which is about seven hours before I normally fall asleep. Lights on, stuff strewn across my bed, no dinner or night-time meds administered, I just pass out.
  • My PCA leaves without brushing my teeth, because sleep is so hard to come by, we don’t want to wake me up.
  • I woke up at 11:00 PM anyway.
  • I started thinking about this list I wanted to write, this blog, and of course now I cannot fall back asleep.
  • It’s 2:00 AM. It will likely be several hours before I fall back asleep.

The gist

  • I used to wake up to someone who was overjoyed that I was awake.
  • No matter what kind of mood I was in, how I felt, what the plans were for the day, my waking up was exciting. It was an event.
  • It’s difficult to fall asleep surrounded by absence. It’s beyond difficult to go to sleep knowing there is no one to wake up to.
Gadget, mouth open, looks like he is laughing

Gadget's smile.

* * * *

Back to December, 2010, almost a year later.

I know I’m behind on comments, but I really do love and appreciate them. I’ve just been bogged down in, well, grief. But I will respond!

-Sharon, the muse of Gadget, and Barnum (someone to wake up to)

QuickPress: God Laughing. (Me? Not so much.)

You know that expression, “If you want to make God laugh, make plans?” Or “Life  is what happens while you’re making other plans?”

Well, I guess I’ve been having a lot of life, or delighted deities or whatnot, because my life is not going according to plan.

I posted before Thanksgiving that I was hoping to do lots of training with Barnum, especially recalls, during my week alone. I also wanted to go on a lot of nice walks with him.

However, the Saturday before Thanksgiving, on his run around the pond with Deb, he somehow took a chunk out of his inner toe pad on his left, front paw. I didn’t realize how bad it was until, after taking him the next day to play raucously with his favorite dog buddy, he was limping. I cleaned it up, but the next morning I could tell he was feeling pretty bad, and the wound did not look good.

Thus began a week of limited exercise, limited training (because so much of it requires movement, and that was painful for him), and lots and lots of foot first aid. The technique I developed was:

  • Wipe affected area with alcohol prep pads. (I had used a different antiseptic the first time, and he jumped and yelped and tried to get out of Dodge. The alcohol seemed to sting, but not hurt as much.)
  • Keep paw in the air so it stays clean before I . . .
  • Apply triple antibiotic ointment.
  • Continue to keep paw in the air so it stays clean before I . . .
  • Apply a sterile gauze pad.
  • Continue to keep paw in the air so it stays clean before I . . .
  • Tape the pad in place. I started out with paper tape,  but that didn’t hold as well as my waterproof first aid tape. Unfortunately, I need that type of tape for my PICC line care, and I used a ton of it on Barnum with twice-daily dressing changes for almost two weeks, because  I also needed it after I . . .
  • Put a clean cotton sock over it all, and tape it in place with tape wrapped above and below that protrusion where his dew claw would be if he still had it. That keeps the sock from sliding down. Then, of course, I applied the traditional medical . . .
  • Cayenne pepper, to the sock. Yes, this might seem mean, but it was the only thing initially that kept him from tearing off the sock. Eventually, he learned to leave the sock alone, and I didn’t need to use it anymore.
  • If he needed to go out, I had to put a plastic bag (or two or three), or a couple of nitrile or vinyl gloves over it all, and tape those into place, as well.
  • Eventually, when the wound was doing much better, I switched from the sock/bag procedure to a less bulky . . .
  • Sterile thin paper face mask around the paw (can you tell I have a lot of leftover infusion supplies? Thank goodness!).
  • This was held in place with gauze bandage (which only required two small pieces of waterproof, first-aid tape). Then the whole “look” was topped off with a . . .
  • Powder-blue dog “booty” over it.
Barnum big head in booty

Does this booty make my head look big?

  • “Booty” does not do this piece of canine footwear justice. It’s really more of a doggy high-tech sneaker. I call them “the Nike cross-trainers of dog booties.” They come in a set of four, but for the past week, he’s just been wearing one, which I rotated, based on which was muddy and which was clean and dry. It has a mesh top for breathability, elastic to keep it on comfortably, along with the velcro, and real treads on the black rubber sole.
Doggy Nikes

I am ready to be on Pawject Dogway.
  • The sneaker is not waterproof, but it keeps the bottom of the paw relatively dry, unless it’s really wet out, and it has the advantage of being much harder to shred, pull off, or destroy than the sock, bag, etc.

Therefore, not so much with the walks and recall training. On the plus side, a lot of handling training! He is now very good about letting me mush and maul his front, left paw!

Of course, eventually he and I were both physically doing well enough that I wanted to take him for a walk — which I did after my morning PCA had left and before my evening PCA came on shift. My big, bad-ass, outdoor chair that is made of recycled parts, which I bought specifically to be able to walk Barnum, was low on battery power. I knew that already. I also knew it wasn’t good to let it sit too long without using it or charging it, so I made sure to charge it mid-week.

What had been happening with my chair was that if we went for very long walks, especially really fast, and/or at night when I had the headlights on, and/or over really rough or hilly ground, it would lose power in a serious way on the way home. So, my plan, for the sake of my chair and Barnum’s paw, was to take us for a short walk on one of the less rugged roads (though, since I live on a dirt road in a hilly area, there is only so much that can be done to avoid that).

Pchair with headlights

This is how my bad-ass chair looked when it was under construction, a year ago (before it got all dinged up and the batteries died).

Here’s what occurred:

I got Barnum’s harness and hunter-orange “recreation/visibility” vest on him, and got my headrest and foot rests set and adjusted on the chair, and away we went, out of the yard, down the driveway, right out onto the road, about fifteen or twenty feet, and then the chair totally died. Totally. Dead. Could not turn around. Nothing. No lights on the control panel.

We sat there in the middle of the road. I waited for a car to come so I could ask for help. Barnum waited for me to get on with whatever the hell was holding me up so we could get going. After all, I had asked him if he wanted to go on a walk? Do ya? Do ya wanna go for a walk?? Wannagoforawalk?? Do ya???

Well, I lied. The poor dog got no walk. Eventually, a car came in our direction . . . and turned in at the first house on the road. (My house is the second, up the road.) I saw two people, whom I thought were women, but I couldn’t recognize them from the distance, and waved and said, “Hello! Hello? Is that Lynne?” (Lynne is my neighbor. I realized they were neither of them Lynne because they just looked at me and each other, and didn’t take a step in my direction, whereas Lynne would have greeted me warmly and probably realized something was wrong.)

They started to head into the house. I said, “I’m stuck!” That got their attention. “Can you help me?” I asked.

They came towards me. Barnum stood at attention next to my chair, looking at them with serious intent, and gave a couple of experimental “woof”s. These are quiet, hoarse, tentative woofs for situations where he thinks he should bark, but he hasn’t yet figured out how to do it.

“You’ve trained him really well,” one of the women said. “He’s very protective of you.”

“No,” I said. “That means I haven’t trained him well. He is not supposed to be protective of me. That’s a problem. We’ll need to work on that.”

This was the first time he’d ever barked at a stranger when we were out and about. I was not happy about it. Fortunately, when they got closer, he became his usual goofy, wiggly self and wanted to sniff their butts and kiss and play.

Meanwhile, I explained that I lived there (pointing), and my batteries appeared to be dead, and could they push me in my chair home? Fortunately, they could. I really hadn’t known if they’d be able to, because my chair weighs over 400 pounds, and I’m no feather, either. They were young, strong, and healthy, though, so it was okay. Except for the humiliation.

I decided I really must, must, must finally deal with figuring out which kind of wheelchair batteries to get to replace the dead ones, which I’d been putting off because I am not at all mechanically inclined, and the whole thing makes me anxious as hell. Only three things got in my way:

  1. I’d run out of the supplement that I use to help me sleep, so I’ve been even more chronically sleep-deprived than usual, which makes it hard for me to think about, read about, and take in new information about, a subject that is both cognitively taxing and emotionally loaded for me.
  2. I spent a lot of energy bandaging and unbandaging Barnum’s foot, and taking him out to eliminate, after making sure he really, really had to go, and was not just ringing his “out” bell because he was bored and wanted to go out and play. Why did I want to make sure? Because any time he needed to go out, I had to put a bag or glove or sneaker on his paw. The result was that one night I did not get him out in time. I discovered this the next day when my PCA informed he had peed on a bag of my infusion supplies. I don’t think that’s medically advised.
  3. I was wracked with horrible grief after realizing that I have a huge backlog of grief from the loss of numerous people (including Gadget) to death or abandonment, as well as never having mourned the many functional losses and other “life losses” (such as my former career as a writer and editor) related to getting multiple tick-bourne diseases three years ago. I’ve been numb for most of the last year because I couldn’t cope with how excruciating the grief over Gadget’s death was if I allowed myself to feel it. I started to feel it, due to the anniversary of his death, and it felt like someone was squeezing my heart while hitting it repeatedly with a brick. The grief also made the insomnia worse.

That’s where Barnum and I are at, currently. His paw is almost totally healed. My heart is broken. Win some, lose some.

We’ve been doing more training again, and I still haven’t managed to even follow the links my less-wimpy and more mechanically inclined pchair-using friend sent me about batteries. I’m afraid I’ll get the wrong kind or otherwise screw up and break my chair.

One thing I am not afraid of, though, is ordering products from dog catalogs. The next time I place an order, I’m stocking up on vet wrap, which is self-adhesive, waterproof, and coated with bitter apple and cayenne to prevent chewing. I think maybe a case of it should last us till the end of the year.

By the way, dear readers, Barnum and I have actually trained a bunch of stuff in the last couple of months that I am backlogged about posting about. I’ve gotten wrapped up in writing Gadget bereavement posts, including what will hopefully be some useful grief resource pages. So, if all goes well, the next many posts will be a mix of happy training updates on Barnum and more somber (but maybe in some way uplifting, affirming, or useful) posts about grieving a service dog.

Comments very welcome!

-Sharon, Barnum (“bootylicious” fashion icon), and the muse of Gadget (who looked good in anything)

P.S. Breaking news! My favorite online vet, Doc Truli, aka VirtuaVet, just posted a great solution for covering a dog’s legs.


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