Signal Boost: Migraine and Suicide

Kelly of Fly with Hope just posted Migraine and Suicide: What to Do when You Are in Crisis (Suicidal). Here’s the beginning of her post:

This week, September 4th through September 10th is the 37th Annual National Suicide Prevention Week. September also happens to be Pain Awareness Month.  In honor of National Suicide Prevention Week and Pain Awareness Month, I will be continuing the series I started with the post Migraine and Suicide. Please check in every day as there will be posts with contribution from the chronic Migraine and chronic pain community on topics related to chronic Migraine/chronic pain and suicide including how to cope when you are close to the end of your rope, personal stories from those who have been there, on suicide and faith, a post especially for loved ones (family, friends, caregivers) and links to other blogs/articles on Migraine and suicide.

I’m so glad to see this happening. The people I know who are chronically ill who committed suicide were people who were living with chronic pain. I think that when you live with uncontrolled severe and/or chronic pain, a sense of desperation and unbearable suffering is more common than not. I know many people who live with chronic or severe pain who are or have been suicidal, and of those I know who have killed themselves, most were in severe, chronic pain.

There are a lot of reasons to discuss suicide in conjunction with chronic pain and/or migraines. One reason is that the actual  physical  suffering can be so severe that people can become desperate enough to want to end their lives, or more accurately, to end the pain they’re in.

Another is that there are harsh, judgemental attitudes in our culture about both suicide and chronic pain/illness. When someone is suffering emotionally or physically or both, they may have internalized cultural messages that they are “weak” or that they are alone or that they are “selfish” to feel the way they do. This creates a barrier to reaching out for help and support. It’s crucial that we remove the stigma from talking about both suicide and chronic pain so that when we are suffering, we can receive empathy and kindness which will hopefully ease our suffering and provide options other than (or at least, in addition to) suicide.

Another reason is that chronic pain rewires our brains. It affects who we are and how we think and feel. Migraines, specifically, are a form of neurological disease. Migraines are thought to be a form of slow seizure. So it makes sense that often, during a migraine, emotions are altered or heightened. I know that during severe migraines my moods and thought patterns are altered. I often become weepy and anxious and think strangely. When the migraine has lifted, I often don’t even remember what I was thinking or feeling, or if I do, it doesn’t make sense to me anymore.

Flying with Hope will be posting links and resources for migraineurs, those with chronic pain, and those who are or who have been suicidal. She’ll be talking about feeling suicidal herself and linking to others with chronic pain who have. I wanted to let you know about these resources for any of my readers who are or have been feeling suicidal, as well as for those who want to pass resources on to others, or for those who have suffered the loss of a loved one to suicide.

Kelly is asking those who have felt suicidal to blog about it. I’m quite sick and exhausted right now, so I’m not up to saying much, but to try to help reduce the shame and isolation you might be feeling if you have struggled with thoughts of suicide, I want to let you know that I have been suicidal. I am not suicidal now, but for several months, when I was at my sickest, I was in excruciating physical and psychological pain, and I did research ways to kill myself. I didn’t tell anyone I was doing that because I didn’t want them to stop me. I was having pretty much round-the-clock migraines at the time, but I think the primary reason for my suicidality was neuropsychological damage caused by Lyme disease and bartonella infection. I did not know at the time that I had these diseases and that they could be causing these symptoms.

There have been other times in my life when I thought about suicide, but that was the worst time. I feel very grateful that I am not chronically psychologically altered and depressed anymore. I hope I never feel that way again. At least I have lived through terrible, terrible times and know it is possible for life to get better.

If you are feeling suicidal, please talk to someone who will be kind and supportive. If you don’t think you have anyone like that in your life, you can talk to these people any time of the day or night, for free, who are dedicated to providing support to people who are feeling suicidal:

National Suicide Prevention Lifeline contact info:

Voice/English: 1-800-273-TALK (8255)

TTY: 1-800-799-4TTY (4889)*

En Espanol: Red Nacional de Prevención del Suicidio:  1-888-628-9454

You can also get support and information at their website, suicidepreventionlifeline.org.

*When I was suicidal, most of the time I couldn’t speak and I couldn’t use my computer, so the only way I had to communicate was by TTY. I would really have liked to have known there was a dedicated TTY line for a 24-hour suicide prevention hotline. The only hotlines I found, I had to use relay, and you really don’t want to use relay when you’re in that state, believe me! People with speech or communication disabilities, Deaf people, and deafblind people experience suicidal feelings, too. Please pass on all the links!

A different, and unique, approach to the discussion of suicide is at Write Me! Leah Petersen’s blog, where the 5 Minute Fiction challenge is held. Another part of her blog is called Suicide Notes. Leah says:

Prompted by many debates on various internet boards, my own experiences, and the comments of others, I have decided to take on the topic of suicide.

I’ve been on both sides. I’ve lost someone very dear to me that way, and I’ve looked it in the face myself.

It’s an ugly, horrible, scary place to be. And it’s almost impossible to understand if you haven’t been there. So people hurt. And people get angry. And they get judgmental. And people don’t get the help they need. And people make attempts and…

Anyway, it’s hard even for me to articulate in cold, clinical terms this particular issue.

So naturally I’ll retreat behind a fog of fiction.

Therefore, I’ve taken on a new project. A collection of flash fiction pieces called Suicide Notes.

Please keep these resources for yourself and pass them on to others.

One note: Fly with Hope’s tagline refers to Jesus, but there hasn’t been anything remotely religious or Christian in the two blog posts of hers I’ve read about migraines, pain, and suicide. So, if you are not Christian, please don’t let this get in your way; I didn’t find anything “Jesus-y” in her discussion or in the resources provided.

– Sharon, the muse of Gadget (my best suicide prevention treatment), and Barnum, SDiT and antidepressant

QuickPress: Natural Disasters & CFS/ME

The US Centers for Disease Control and Prevention (CDC) has published a long paper that seems to be based on a conference about the adverse effects natural disasters have on people with chronic fatigue immune dysfunction syndrome (CFIDS, also known as myaglic encephalomyelitis, or ME, and chronic fatigue syndrome or CFS). This is quite relevant to my recent post about how I developed PTSD due to a natural disaster two years ago.

This is a lengthy PDF you can download with multicolored graphs and charts and bullet points, oh my!

The first 46 pages are not that useful and are somewhat annoying, but there’s some validating stuff after that. For instance, it lists various physical, cognitive, emotional, and behavioral symptoms that commonly arise from stress or trauma. The heading for one page is “In people with CFS, a natural disaster worsens all symptoms of CFS.” Below that are bar graphs that show relevant data.

Perhaps two of the most important points it makes are these:

1. Any form of stress is harmful — including long-term outcomes — to people with CFS,

and

2. People with CFS usually function better in an emergency and then get much sicker after the adrenaline wears off. (Referred to in the CFIDS world as “crashing”).

In fact, I’m going to type out the page that addresses this because I think this is a hard concept for most people to grok: A hallmark of CFIDS is “post-exertional malaise,” which means that starting about 24 hours after any type of physical, mental, or emotional exertion, the person with CFIDS gets much sicker (crashes). These crashes can last for days, weeks, months, years, or forever.

It was hard for me to understand when — many years ago — my best friend’s house burned down (she also has CFIDS), and I was also displaced at the time, and we both totally overfunctioned. In fact, she was more functional than I was, and her situation was much worse. We both did things we could never normally do, and we joked about horrible disasters being the cure for CFIDS. Of course, that did not turn out to be the case.

Page 57, under the heading, “Essentials of Disaster Response for Patients with CFS,” it says:

• Animal studies demonstrate that the stress response takes priority over sickness response
• In clinical terms this means that people with CFS will often perform normally in times of life-threatening emergency
• Data suggest that the big risk for CFS patients is that disasters can trigger long-term declines in functioning.

So, there it is, folks. People with CFIDS have been saying it for decades, but now the CDC has published a document about it. Hopefully this will lend our experiences more credibility in the minds of our health care practitioners, our friends and families, and the general public.

It’s not a bad reminder for us to tell ourselves, either. Even though I didn’t lose power due to the storm, I have been more than usually exhausted, in pain, and cognitively impaired since the weekend. I have been trying to power through it (you may have noticed how many blogs I’ve posted, although they were not particularly coherent, pithy blogs), because I am ambitious, bored with being sick, and tend to judge myself harshly for “not being productive.” Good time to remind myself of what I so often try to convey to others: Being sick is a full-time job. When you have to deal with a stressor, like a PTSD flare, you’re putting in overtime. The illness doesn’t like that, and charges you payback. So says the CDC.

– Sharon, the muse of Gadget (floor potato), and Barnum, SDiT, anti-anxiety dog and bed potato

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:

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

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

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)

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.

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.

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.

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?

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.