Archive for the 'Disability/Illness Awareness' Category

Waspish Wednesday: Don’t “Let It Snow.” How Autoplays Can Disable Visitors to Your Website

Recently a friend of mine visited a blog she often visits. What she didn’t know was that the blogger had added a fun, temporary new feature to her blog. When my friend visited the blog, it triggered a seizure.

There are many different kinds of seizures, and every person experiences them differently, but some common aspects of seizures include inability to think, exhaustion, loss of bodily control, memory loss (during or around the seizure), and severe headache. Regardless of the specifics, having an electrical storm in your brain is not fun.

The seizure trigger in my friend’s case was WordPress’s “Let It Snow” feature, which is a feature that causes little white dots to float continuously down the screen soon after someone opens the blog. I believe people enable this feature on their blog because they think it’s fun — probably for them, and they assume, for most of their blog visitors. [Update: Actually, I have just learned that if you have the paid version of WordPress, it does this automatically in December. Blog owners need to opt out if they don’t want it; I think this is a terrible system, and it should be an opt in. I plan to try to contact WordPress and ask them to change it.] They may do it to be festive, to enjoy the holiday season, to spread some cheer among their readers, or because they don’t know how to turn it off. I’m certain nobody uses this feature with the intention of causing distress to site visitors or with the intention of making their site inaccessible.

Autoplays Interfere with Access for Many People

The problem is larger than snow. And it doesn’t just affect people who are susceptible to seizures. Autoplays — any sound or movement that starts up automatically when someone opens an email or webpage — can interfere with internet usage for many, many people.

Examples of autoplays:

  • A music player that starts up automatically when someone visits your business site or .ning personal page
  • A video that starts playing when a visitor opens a news article
  • Animated GIFs (short clips of moving pictures or drawings) that you paste in the comments section of an online magazine
  • Graemlins or smileys in emails or on bulletin boards that bounce, flash, or change facial expressions

Examples of disabilities that are affected by autoplays:

  • Blindness, low vision, or other visual issues
  • Migraines and seizures (the first and fourth most common neurological disorders, respectively)
  • Sensory processing issues and various of other neurological issues
  • PTSD, panic attacks, and other conditions that cause a heightened startle responses

Recently, I tried to do some education on this topic in the comments section of a magazine where a video was on autoplay in an accompanying article. Some of the responses to my comment let me know that many people don’t understand how and why autoplays can be an issue for so many people. So, here are some details that I hope will answer lots of questions. (If I don’t address your question, please comment!)

Q: If someone has one of these problems, why don’t they just leave the page or turn off the video or music when it starts up?

A: Sometimes this is an option for people and sometimes it isn’t. In some cases, as soon as the computer screen flashes or the sounds start up, the computer user has a problem. My friend’s seizure was triggered before she could exit the page. The same can be true for migraines; I have had migraines triggered by music playing, by the WordPress snow, and by other moving or flashing things. Once the migraine or seizure starts, you’re stuck with it, regardless of what windows you close.

Some people (including me) may also experience sensory overload — causing disorientation, trouble thinking, or even panic — as soon as music comes on or a video plays or smileys bounce across the screen. This confusion and overwhelm can interfere with my ability to find the “off” button for the player or the tab to close the window or even the volume control for the computer. On more than one occasion — and I’ve heard this from others, too — I have had to hit my computer’s power button just to escape the sensory overload because I couldn’t figure out how else to make it stop. For people whose symptoms are severe when they unexpectedly encounter an autoplay, navigating the web can feel like a minefield.

Q: If the problems are so severe, couldn’t you prevent them by keeping your sound shut off or avoiding sites where videos play and things like that?

A: Some people keep their sound shut off, but this isn’t workable for everyone. I’ll go into more detail about that in my answer to the next question.

Avoidance of problematic pages isn’t always effective because you don’t always know where you will run into these issues. For example, I subscribe to several blogs that I enjoy, and most of the time they present no access issues for me. However, every year, suddenly, some of them are snowing. I like to be able to read these blogs — some of them are written by friends — so I don’t want to just stop subscribing to them. And it’s also not a workable solution for me to not read any blogs from Thanksgiving through New Year’s because I have a lousy sense of time and impaired memory. It is always a surprise to me when I open a blog that is normally fine and it suddenly starts snowing.

The other reason for not just avoiding sites that have these features (even if that was possible) is that, as is probably true for you (since you’re online), the internet is very important to me. In my case, the internet is my primary source of information, friendship, entertainment, communication, and work, and losing access to this is difficult. In particular, I’ve found that certain illness-specific communities (such as chronic illness forums on .ning and many illness boards) are very heavy on the bouncing smileys and autoplay music. When my neurological symptoms were particularly bad and I couldn’t tolerate unexpected sounds and movement, I stopped using them. Sadly, these were also my main sources of emotional support and medical tips for the very diseases that were causing these symptoms.

Relatedly, I like having my sound on for the same reason many people do: There are sounds my computer makes that I want to hear — sounds which I have enabled, in some cases. For example, when a new email arrives, or I get a private message or a relay call, my computer goes “Bing!” so I know to check messages or email. I also like to intentionally watch videos or listen to radio programs that interest me. I could theoretically turn my volume off and on all day long every time I opened a new page or tab on the internet, but that would be a real energy drain and pain in the butt, and also, I do sometimes try to do that, and there is one substantial drawback: because one of my neurologic issues is impaired memory, I often forget that I’ve turned my volume off. Then I miss message notifications, can’t understand why the volume isn’t working on a video, etc.

And then there are people for whom, if they turned off the sound, their computer would be unusable: screen reader (or text reader) users,* which includes many legally blind and virtually all totally blind computer users. Screen readers use audio output** (a computer “voice”) to tell the user what’s displayed on the screen, including the content (such as an article) and the navigation (such as links, headers, applications, descriptions, etc.). If you’re using a screen reader and suddenly music or a TV clip starts playing loudly at the same time, it interferes with your ability to read and can also make it difficult to navigate away from the page causing the interference! This is another example where “just turning off the music/video” is not a viable solution, because you might not be able to navigate to the “pause” button to turn it off.

While we’re on the subject of visual disabilities — just because someone is blind, it does not mean they won’t be affected by visual autoplays as well as sound autoplays. There are a lot of kinds of blindness, and not everyone who is blind is totally blind. For example, my friend whose seizure was triggered by the snow autoplay actually is functionally blind and uses a screen reader, but she has enough vision for her brain to undergo an electrical storm when it registers the flashes and movements on the screen.

Q: But a lot of people really LIKE music, videos, bouncing and flashing things, “Let It Snow,” etc.!

A: Yes, and I wouldn’t want to deprive people of that enjoyment, either! That’s why I think the best solution — one that can work for everyone, I believe — is to make such features contingent on the user activating them. In other words, if you have a visual art website and you think it will heighten visitors’ enjoyment to hear music that accentuates certain aspects of the art, set up your music player so that they can hit “play” IF they want to hear the music. If your article is about a funny video, use one of the many video players that allow people to hit “play” when they want to see the video. I see no reason why WordPress can’t add a widget that says, “Let it snow!” so that blog visitors who want “snow” while they read can activate the snow. Etcetera.

This is really, in my opinion, about consideration and consensuality. Just as websites with explicit sexual content have a warning screen or put “NSFW” (“not safe for work”) in post titles, and posts detailing violent or dehumanizing events include a trigger warning, it is only reasonable and kind to allow all users, whether disabled or not, to choose whether or not to have music blare, graphics bounce, or people shout from a video screen.

Three Simple Steps You Can Take to Make the Web More Accessible

1. When you set up your blog, website, magazine, or personal page on a forum, don’t use any autoplays. If you want videos or music to play, great — just make it optional. If you already have autoplays set up, remove or alter them so that visitors to your site have choice.

2. When you visit a website, blog, or forum that uses autoplays, ask the people who own or run the website to remove or alter them so that they can be used consensually. I think it’s most effective if you explain why they’re a problem for you or others and give examples. I also think such requests go over better if you make an effort to be courteous.

3. Share this post! Lots of people have no idea that autoplays can be problematic for others, often including friends and loved ones. I am certain that many people would opt not to use them if they knew there were alternatives that would provide greater access and well-being to many of their site visitors.

I welcome your comments!

– Sharon and Barnum, SD

P.S. If you want to learn more about creating accessible sites, here’s an article about five easy steps to increase access, and here’s a more comprehensive one I wrote that includes reference to colors, flashing, sound, etc.

*Screen readers may also be used by people with print disabilities such as learning disabilities.

**Some screen reader users, which includes some Deafblind people, might use a Braille output instead of or alternating with an audio output.

What a Bartonella Herx Looks Like

Today’s post feels very vulnerable. It contains two short videos of me that are not the way I normally want people to view me. However, my desire for understanding for myself and for other people with Lyme and other tick-borne disease is stronger than my worries of what viewers might think about me.

I’ve been very sick lately. Partly this is a result of Herxheimer reactions I’m having from a powerful medication I’ve recently started using to fight one of my tick-borne diseases, bartonella. Bartonellosis is also sometimes called cat scratch disease.

Even though I’ve been treating Lyme disease for over five years, there are still people in my life who don’t really understand what herxing is and why treatment sometimes seems to make me worse. So, I decided to video myself going through a herx reaction as a way to help my friends understand.

I also want this information (both the videos and the written information here) to be available to the general public, especially other people with tick-borne diseases (TBDs), their families, and the medical community. TBDs are still not very well understood. For example, there are 26 known strains of bartonella, but when people get tested, they are typically only tested for one strain, bartonella henselea — the strain that causes cat scratch fever.

I never had a positive bartonella test, but because of my other symptoms, known tick bite and other positive TBD tests, I was diagnosed clinically. I hope this post will answer questions about what herxing is and why people with TBDs persist with a treatment that appears grueling.

Often when I tell people that I’m sicker because I’m doing a new treatment, they think I’m experiencing side effects from the drug. This is not the case. According to drugs.com:

side effect is usually regarded as an undesirable secondary effect which occurs in addition to the desired therapeutic effect of a drug or medication.

In other words, side effects are never good. Whether you stay on a drug that’s causing side effects or not depends on the severity of the side effects and the usefulness of the drug; but drug side effects are never an indicator of efficacy.

A Herxheimer reaction also involves unpleasant symptoms (which can range from brief discomfort to serious and prolonged or even deadly symptoms) that occur after taking a medication. However, these symptoms are not side effects of the drug, itself. Instead, they are the result of massive die-off of pathogens by the antimicrobial medication (usually an antibiotic, but sometimes an antiparasitic or similar). These dead or dying microbes release toxins into the body, and symptoms result until the body is able to process and eliminate these toxins (detoxify).

This Chronic Illness Recovery website explains herxing well:

Herxing is believed to occur when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it. This provokes a sudden and exaggerated inflammatory response.

The treatment of many bacterial infections provokes a Herxheimer reaction. Herxing was originally observed in patients with acute infections such as syphilis. . . . The immune system response to acute infection is sometimes referred to as the immune cascade. For example, in the infamous anthrax attacks people died because by the time they got to hospital the anthrax organisms had multiplied to the point where killing [the anthrax organisms] also killed the patient.
It has been reported that patients with chronic conditions or infections such as rheumatoid arthritis, Lyme, tuberculosis and louse-borne relapsing fever have also experienced herxing when treated with the appropriate antibiotics.
Chronically ill patients are carrying a heavy load of intracellular pathogens by the time they become symptomatic. . . . The immune system response when these intracellular bacteria are recognized and killed causes a similar immune cascade.
In other words, herxing only occurs when a treatment is appropriate and effective. If you are not infected by the particular microbe you’re targeting with a particular antibiotic, you will not herx on that antibiotic. And generally speaking, the worse your infection is, and the more effective the antibiotic is at killing it, the worse you herx.* For this reason, herxing is also sometimes referred to as a “die-off reaction” or a form of “healing crisis.”
Although herxing has caused me a lot of physical and emotional distress over the last few years, I also find it a useful tool. Whether or not I herx on a particular treatment can be a helpful indicator of the presence or severity of a given infection. It can also provide information on whether a given drug is efficacious or not for what we’re trying to treat.
People often ask me how I can differentiate between when I’m experiencing a herx and when I’m experiencing a bad reaction to a drug or suffering from a drug’s side effects. Although it’s not always entirely straightforward, usually the following is true of a herx, for me:
  • Herx symptoms are often stronger versions of what I was already experiencing as symptoms of tick-borne disease (TBD). For example, I often have increased pain, exhaustion, shortness of breath, and weakness when I herx, but these are already symptoms I’m living with due to TBDs. The herx just makes them more intense.
  • Some herx symptoms are known symptoms (sometimes esoteric ones) of the TBD I’m treating. For example, burning on the soles of the feet and shin-bone pain are two classic symptoms of bartonella, both of which I have had pop up or worsen when I started a drug that treats bartonellosis. Air hunger and night sweats are classic babesiosis symptoms, both of which worsened for me when I started treating babesia a few years ago with antimalarial drugs. Also, some TBDs tend to act unilaterally and others act bilaterally, so a symptom that was present before in both sides of the body might worsen on one side only during a herx; bad reactions to medications and side effects are not usually this quirky. Although I started having joint pain soon after I was infected by a tick, it was not until I started treatment that I had joint swelling. Five days after starting the antibiotic Flagyl, my toes swelled up. Later, when I started Bicillin (an intramuscular injection of penicillin), my wrists and knees puffed up. Eventually, after sufficient treatment, my toes and joints regained their former appearance. Likewise, I was having trouble voicing when I woke up yesterday morning, and I was already exhausted and in pain, though happily, my voice had returned to full strength shortly before I started my infusion. (Also, I was working so hard while being videoed at explaining what was happening with me — using notes to try to be comprehensible and accurate — that I actually think I look less sick than I was. After we stopped taping, for example, I went into an extended coughing-and-trouble-breathing jag and also was just lying there and unable to move my arms much to rest up from the exertion, but hopefully you get the idea.) So when my voice went away again during the infusion (as you’ll see in the video), that was a pretty obvious sign of herxing, but I have been nonverbal most of the last six weeks, whether or not I’ve done a recent infusion.
  • Herx symptoms usually hit hard and fast and then (eventually) go away. Most of the time, if I take a new antibiotic orally or by intramuscular injection, the herx will start within a day of the new treatment. Sometimes within a few hours. There are variations. Sometimes it starts out mild, with just one or two symptoms, and over the course of a few days, the symptom get stronger and others reveal themselves. If I am infusing the antibiotic (intravenous therapy), the herx usually starts within minutes (as you’ll see in the videos below). How long herxes last varies a lot. I seem to herx for much longer than most other Lymies I’ve talked to. I’m not sure why. Maybe it’s because I was so severely infected with so many pathogens for so long, and then I started aggressive treatment with multiple drugs, full strength, at once (which I will never do again and strongly advise against!), but I herxed for well over a year on some drugs (probably because they were in combination). With side effects, or other adverse reactions to drugs, usually I do not start out with that symptom, and then it appears and increases over time. With herxing, it’s the opposite: it starts out strong, and then it gets less severe. Eventually the herxing stops and I feel better on the antibiotic than I did before I started it.
  • By now I am familiar with what most of my TBDs do and what my herxes feel like. Some examples are listed above: muscle and joint pain, exhaustion, tremor, weakness, dysphonia, etc. Other symptoms were harder for me to clue in to. For the first year or two after the tick bite, I was really crazy a lot of the time. I didn’t realize that the way I was feeling emotionally was a symptom of the TBDs. I also didn’t know what herxing was. So, I was already experiencing a lot of psychological and behavioral symptoms that I wasn’t really aware of. (I just thought everyone else was being unreasonable.) Then, when I went on antibiotics, the symptoms got worse. The more powerful and effective the treatment was, the crazier I got. This caused serious damage to my relationships and sense of self because I was not aware of what was happening, nor did I have the supports I needed to manage it. Now, before I start a new antibiotic, I tell key people in my life so they can be on the watch for any psychological symptoms I might be unaware of. However, after six years of dealing with this, I’m now very tuned in to what is “me,” and what is “the bugs eating my brain.” Fortunately, I don’t have psych herxes with every new drug. They seem to be worst for babesia (mood swings, desolation, hopelessness, paranoia) and Lyme (agitation and rage).
Below are two very short videos I made yesterday. The first one is at the beginning of my infusion, and the second one is 25 minutes later, at the end of the infusion. I chose to video yesterday’s infusion because: 1. Yesterday morning I had relatively clean hair and good natural light. 2. I was increasing my dosage so I thought it was likely I would herx. (As it turns out, I herxed much faster than I’d expected.)
If you’re reading this in an email or to watch the captioned version of Part 1, click here. A transcript of both videos is at the bottom of this post.
The Youtube of Part 2 is below, but it’s all nonverbal and signed, so unless you can understand really exhausted, broken ASL, you’ll want to watch the captioned version.
Now that you’ve watched the videos, I hope you will keep these three things in mind:
  1. Herxing subsides in time. I will not go through this every time I infuse this medication. Eventually it will make me feel better, not worse. I’m on several other antibiotics that have helped me improve a lot, and if I go off them, I tend to get worse (unfortunately). Meanwhile, the herx tells me the drug is doing what we want: killing the bacteria.
  2. Everyone’s herxes are different. There are some common bartonella symptoms, but each person’s constellation of symptoms are unique.
  3. If you are starting treatment for Lyme or other TBDs, I strongly recommend only going on one new treatment at a time until you are tolerating it well and also starting at low doses and ramping up over time. In both the short and long run, it’s safer and kinder to yourself not to try to tough out the most extreme herx possible.
I hope this was useful. I welcome comments and questions. I also hope you will share links to the videos and to this post to spread awareness of tick-borne diseases and their treatment.
-Sharon, the muse of Gadget (canine Lymie), and Barnum, SD
*This does not mean that herxing always occurs every time someone takes an antibiotic for a bacterial infection! Some types of infections are much more likely to cause herxes than others, and a few fortunate people don’t seem to herx in situations where others do.
P.S. Betsy walked into my room later that day and said, “Are you wearing makeup?”
I said I was because I’d made a video of myself, and then I showed it to her.
She said, “You put on makeup to show how sick you are??”
I said no, not to show how sick I am, but to show what herxes can look like. And, “Just because I’m sick doesn’t mean I want to make a video looking like crap!” I mean, these images stay on the interwebz forever…. Sheeh! It’s a femme thing….
Transcript of First Video:
Sharon is propped up in bed, oxygen cannula in her nose and IV line running from under her shirt off camera to her side. Sharon: Hi, it’s Sharon. I’m just starting my Rifampin infusion this morning — to show the difference between before a herx and after or during a herx. Right now, before it’s starting, my pain is about a four or five throughout my body. And my voice is working, as you can hear. Oh, it’s already starting. [Voice becomes scratchy.] I’m feeling some tightness in my chest, and um, starting to get cognitively impaired, and my voice is starting to go a little bit. And I’m starting to have trouble breathing, which is why I set up the oxygen before we started. But I was not expecting it to go this fast. [Voice becoming more hoarse.] So [laughs, coughs] I’m a little surprised and unprepared for how fast it’s hitting, and I’m going to take a break now and finish recording later. Off camera: Cut? Sharon: Yeah.
Transcript of Second Video:
[Sharon lies in bed and begins signing. She signs with her hands low, near her lap, and she doesn’t body shift. She is slumped against the pillows more than in the previous video and sometimes breathes hard with effort. She is not making eye contact with the camera but looking to the side at her computer screen.]
Sharon: Now, near the end… [looking toward the IV pump]
Woman’s voice: Signing? Infusion?
[Sharon shakes her head no each time the other person speaks.]
Sharon: It’s hard for me to breathe. I’m using oxygen at 4 LPM [liters per minute]. Pain is up, muscles locked up. Burning pain in my right shoulder, diaphragm, and right foot. And I can’t move my legs. More difficulty moving my body. For example, grabbing, uh. . . . [Sharon looks around and reaches for her pill box next to her and picks it up and moves it closer to her, which seems to cost a great deal of effort.] Sharon: That’s work! [Laughter turns into coughing] It’s hard to think, to find the right words. I’m reading now — to remember to say, um…. This is how hr… no, herx from bartonella looks. Thank you. That’s it.
Woman’s voice: Cut.

Why I’m Voting “No” on Massachusetts’ Question 2

Imagine this situation: A woman arrives at a hospital for a medical procedure. She is obviously sick, in pain, and severely disabled. She’s in a wheelchair and on oxygen. She needs help getting from her car to her wheelchair, and going to the bathroom, and changing into her gown. Whenever she’s moved, she grimaces, her hands and feet curled in pain. It looks and sounds like talking and even breathing are an effort. In fact, her disease has rendered her incoherent, so the person with her translates her gestures and sounds to the nurses. The patient is asking for a legal document before the procedure — a form.

The nurse immediately understands. “I know what you want,” she says and returns quickly with the paperwork. She explains that these are advance directive forms that the patient can fill out to decline life-saving treatment. The patient says no, she just wanted to update the contact information on her health care proxy forms, which the hospital keeps on file. In fact, the reason she is certain to keep her health care proxy forms updated is that she does want extreme measures. No matter how grim her situation appears from the outside, she wants her friends to advocate for her right and desire to live.

Of course, this is not hypothetical. The woman is me. That incident happened a few years ago. At the time, I was too stunned to take in the meaning of what happened. It was only later that I realized that the nurse had, in effect, offered me a DNR (do not resuscitate) form without my asking, that she had basically asked me if I wanted to die. It’s possible she offers those forms to everyone, but I doubt it. I think it’s more likely that my appearance, the fact that I was visibly severely disabled, led the nurse to the conclusion that I didn’t consider my life worth fighting for.

That story is part of my very personal reason for opposing ballot question 2: I know the “slippery slope” referred to below is not a hypothetical for the future. Some people have already slid down it. Some people have already been pushed. I learned that day that I had to hold onto my breaks even tighter than I thought I did because I was already on the slope.

But there are a lot more reasons to vote against Question 2. The fact is that even if you support the idea of assisted suicide for dying people — the right of someone who is actively dying, who is in pain at the end of their life and wants a way to hasten death by just a few days — you should still oppose this ballot initiative because it is full of gaps and loopholes and opportunities for abuse. It is, quite simply, a bad bill, a bill that ought to spur you towards Second Thoughts:

  • Question 2 is modeled in the laws in Oregon and Washington — laws which have led to documented cases of abuse, discrimination, and pressures to choose suicide over medical treatment based on cost considerations. For example, from an article by John Kelly in Disability Issues: “Disabled people constantly hear how expensive we are, how money could be better spent elsewhere. In Oregon, Barbara Wagner and Randy Stroup received letters from Oregon Medicaid denying them chemotherapy for their cancer.The letters did inform them, however, that the state would cover the $100 cost of assisted suicide. Because assisted suicide will always be the cheapest treatment, its availability will inevitably affect medical decision-making. In a system constantly under pressure to cut costs, choice will be constrained.” (More on this topic in this excellent article, PDF, by Carol Gill.)
  • Elders and people with disabilities are at greater risk for abuse than the general public, and they are also the people most affected by this bill. The rate for elder abuse in Massachusetts is estimated at one in 10 already, with the vast majority of abusers being caretakers — family, heirs, and providers of medical and personal care — the same people in a position to help someone obtain and ingest the poison pill.
  • Risk for abuse is inherent in the law: According to the Cambridge Commission for Person’s with Disabilities,Under this initiative, an heir could be a witness and help someone sign up for assisted suicide despite a potential conflict of interest. Once a lethal drug is in the home, there is no requirement for professional oversight to monitor how that drug is administered.
  • The National Council on Disability (NCD) Position Paper on Assisted Suicide states that: “The dangers of permitting physician-assisted suicide are immense. The pressures upon people with disabilities to choose to end their lives, and the insidious appropriation by others of the right to make that choice for them are already prevalent and will continue to increase as managed health care and limitations upon health care resources precipitate increased ‘rationing’ of health care services and health care financing. . . . The so-called ‘slippery slope’ already operates in regard to individuals with disabilities. . . . If assisted suicide were to be legalized, the most dire ramifications for people with disabilities would ensue unless stringent procedural prerequisites were established to prevent its misuse, abuse, improper application, and creeping expansion.”
  • Inexact wording and application. Anyone who a doctor says has six months or less to live can be given fatal drugs, but doctors are fallible, medical conditions are diverse, unique, and complex — it is not easy to determine how long someone will live. Many people outlive their prognoses for months or years. Some even recover. (I know someone who was terminally ill 15 years ago, and she’s still writing and publishing books today!) It is also a fact that wherever assisted suicide is legal — whether in Oregon or the Netherlands — the definition of who is eligible becomes broader and broader. It is not confined to people who are imminently dying, but also to people who are not terminally ill, particularly people with disabilities, chronic illness, or elderly people.
  • Inattention to mental health issues. According to Second Thoughts member, John Kelly, “In 2011, exactly 1 out of 71 Oregonians seeking assisted suicide were referred for psychiatric evaluation. With the total 14-year referral rate below 7%, people are not being adequately evaluated. Michael Freeland, who had a 43-year history of depression and suicide attempts, easily got a lethal prescription, and it was only because he mistakenly called an opposition group that he was spared suicide. He also outlived his terminal diagnosis.”
  • One of the key reasons that disability rights activists oppose such laws is that the focus of the laws, and the way they are carried out, are not really about providing more comfort in the last hours of a life that is already fading. It is about fears and lack of understanding about what it means to be disabled or ill — a state that many of us spend our entire lives in, often quite happily. Quoting Kelly again: “That word ‘dignity’ in the act title signals that assisted suicide is not about preventing pain and suffering during the actual dying process, but about escaping the perceived quality-of-life beforehand. People’s concerns listed by prescribing doctors are almost exclusively social: people seek assisted suicide because of limitations on activities, incontinence,feeling like a burden, and perceived loss of dignity. We disabled people know that our dignity does not depend on performing our own self-care or being continent every hour of every day. We know that there are social supports such as home care and PCAs that can remove any family burden, and we understand that our dignity is just fine thank you, without having to die to get it.”

Or, to put it another way, I echo Diane Coleman’s statement, published in the New York Times, “It’s the ultimate form of discrimination to offer people with disabilities help to die without having offered real options to live.”

For more information on Question 2 and assisted suicide, please visit the Second Thoughts website or read this excellent New York Times op-ed on Massachusetts Question 2 which was just published on Wednesday.

Peace,

Sharon, the muse of Gadget, and Barnum, SD/SDiT

It’s Carnival Time! #ADBC and PFAM

Martha at Believe in Who You Are is the host of the October edition of the Assistance Dog Blog Carnival. Even though she is between dogs right now, she has taken up the challenge and come up with a great theme: Moments. Please visit her Call for Entries for topic ideas, guidelines, the deadline, etc. Thank you, Martha!

Assistance Dog Blog Carnival graphic. A square graphic, with a lavender background. A leggy purple dog of unidentifiable breed, with floppy ears and a curly tail, in silhouette, is in the center. Words are in dark blue, a font that looks like it's dancing a bit.

Is this the Moment for you to get involved?

Lately it has struck me how many people follow assistance dog blogs (mine or others) who are not assistance dog partners. I know a lot of wonderful dog trainers and lovers of dogs who follow After Gadget here or on Facebook. When I learned of the topic for the next ADBC, I thought, “Anyone can write on this!” I mean, I know some of you who train assistance dogs or who train pet dogs but read about service dogs on lists or blogs or Facebook must have moments you want to share — don’t you? Moments where you read something about assistance dogs or training that made you stop and think? Moments where you read an idea relating to a service dog issue and you realized it could apply to your pet dog or you? Moments that moved, inspired, or irked you?

Why not join the carnival? Come on over, the moment’s right!

And speaking of getting more people involved in the ADBC, I’ve decided to introduce the hashtag #ADBC on Twitter so that people who are tweeting about the Carnival can more easily spread the word. So please, if you write a post for the ADBC or you read a post about it you like, retweet and add the hashtag #ADBC. I am very fond of everyone who participates regularly (or sporadically) and always look forward to their take on the new topic. At the same time, I think it would be fun to expand our family and get new people reading and posting every quarter. Thank you for your help! (By the way, my handle is @aftergadget.)

Green and white rectangular badge. On top, "Patients" is written in all capital letters, in Times New Roman font in white on a kelly-green background. Below, on a white background, "for a moment" is written in green, slanted up from lower left to upper right, in a more casual, slightly scrawled font.

Meanwhile, another blog carnival is taking place now. The monthly Patients for a Moment (PFAM) blog carnival is being hosted today by Selena of Oh My Aches & Pains! She has done an amazing job of putting together a really big and fantastic(ally frightening!) carnival of The Fright Files: Stories of Medical Mistakes. Don’t miss it!

– Sharon, the muse of Gadget, and Mr. Barnum, SD/SDiT

Two Things Service Dogs Can Do that Assistive Technology Cannot (with a side note on brain injury)

I’m having that feeling again. That feeling of being in a partnership. Of having a service dog I can rely on. It’s been three years since I last had that feeling, and boy, am I happy it’s back.

Not that Barnum and I don’t still have plenty to work on. We do. But here’s some of what he’s done today, and I’ve only been up five hours (and he was out on a walk for one of those hours):

  • Helped me undress for my bath by removing two socks, two long-sleeved shirts, and — with coaching — a pair of sweatpants
  • Shut my bedroom and bathroom doors to keep the heat in (repeatedly because I and other people sometimes forget to shut them, see below for memory issues in humans)
  • Shut and opened both doors when I needed them opened
  • Went to get my PCA while I was in the bathroom (opening two doors to get to her)
  • Retrieved my walkie-talkie, a plastic lid, and a pen when I dropped them
  • Retrieved my slippers for me (a few times)

And other stuff which I’ll describe below.

The reason I’m writing this post is that several times today I was able to rely on him for things that I hadn’t planned on needing him for, and it reminded me of all the times people have suggested I use this or that piece of equipment — instead of a service dog (SD) — for a particular problem. And why those solutions sometimes fail me. That’s why I’ve categorized this post under “Waspish Wednesday,” even though it’s not Wednesday, and it’s mostly a celebratory post. It’s also because now that I am enjoying the partnership I have waited (and worked) so long for, I am remembering (with some bitterness) all the unhelpful suggestions of people who have told me that I didn’t need a SD for what I need a SD for.

Not that I don’t use or believe in assistive tech (AT). I do. I use a lot of AT, and I am a big believer in people having access to as much AT as they want to improve their quality of life. And I also believe that there are some situations for which AT is much better than a service dog.* And, they are not mutually exclusive. They are complementary — in my case.**

So, here are two things that service dogs can do that assistive technology (with very few exceptions) cannot:

  1. Think
  2. Move on their own

For example, one of the main things I use Barnum for is communication. I have written about this quite a bit, especially in recent posts. When Gadget died, I got a “doorbell” that became my main way of getting my PCAs, but it had a lot of drawbacks that made me miss Gadget all the more. A lot of people over the last three years have suggested a lot of equipment ideas to rely on instead of Barnum. They are a bell (already have it), walkie-talkies (already have them), and an intercom (have it but can’t use it). Even though I use the doorbell and walkie-talkies every day, I still need Barnum. Here’s why:

  1. My assistants and I are human.
  2. I have neurological damage that impairs my memory.
  3. I have MCS (multiple chemical sensitivity).

Let’s start with #3. The reason I can’t use the intercom is the same reason that for quite a while I couldn’t use the walkie-talkies or the doorbell — they are plastic, and they offgas plastic fumes when they are new. The doorbell took the least amount of time to offgas. I don’t remember now — I think it was just a few weeks, primarily because the only part I have to be near is tiny and the bigger, smellier part is away from me, in the kitchen. The walkie-talkies took a year to offgas. The intercom we have had for over two years and it still reeks to high heaven. I doubt I will ever be able to use it.

Problems #2 and #3 are just variations on a theme. I’m human and my assistants are humans, therefore we sometimes forget things. They have sometimes gone home with the walkie-talkie. They sometimes forget to bring it with them outside. They sometimes go to the bathroom or to get the mail and don’t take them with them. One of my assistants refuses to carry it because of the electromagnetic radiation it emits.

Plus (#3) I have a disability which specifically fucks up my memory, therefore I forget a crapload of things all the time. Every day, many times a day, I forget things, often the same things, repeatedly. All these ideas you might have for dealing with this? Writing things down? Carrying things with me? Velcroing them to me? Timers? Alarms? I’ve tried them all. I already use them all. And it’s still not enough. So don’t fucking suggest them. Please. (That was the waspish part. Could you tell?)

Anynoodle, what I have done in the years since Gadget’s death and Barnum becoming a reliable SD is use the doorbell, and more recently, the walkie-talkies. They certainly are much better than not having them, but there are issues. One is that sometimes I can’t speak, so when that happens, the walkie talkies are about as useful as the doorbell in that they can convey only one piece of information: “I am trying to get your attention.” This can be very limiting, whereas having Barnum bring a note is much better, as I explained in this post.

Another issue is the brain damage/memory thing. I lose these pieces of equipment. A lot. I used to lose the doorbell and the walkie talkies constantly. Frustratingly constantly. Because the problem was that when I taped the doorbell to my overbed table, I didn’t lose it, but I could only use it when I was in bed and not to call for help from the bathroom. Then I got the walkie-talkies, mostly for their portability, and I’d forget to take them with me to the bathroom. (Oh, and someone suggested — after I explained about my memory — that I keep another set of walkie talkies in the bathroom at all times, which tells me that this person doesn’t use walkie talkies because they have batteries that must be charged every night, like a powerchair. If I left them in there all the time, the batteries would be dead when I need them. It also assumes I’d be able to find and reach them in the bathroom which is used by other people. Or perhaps she thinks I should buy three or four sets of walkie talkies?)

Then, I got the brilliant idea of Velcro! I velcroed the doorbell and walkie-talkie to my overbed table where they are within reach and cannot escape. I also put Velcro on my powerchair so I could bring them with me. This has worked very well for the doorbell in that I just leave it velcroed to my overbed table all the time, so I never lose it. But for the walkie-talkie, sometimes I leave it stuck to my overbed table, and I can find it. Sometimes I lose it in my bed. Sometimes I attach it to my chair and then use it when I need it, but more often, I attach it to my chair and then can’t get to it because I’m in the tub or on the toilet and my chair is out of reach, or I have gotten back in bed and left the walkie-talkie attached to my chair, and I can’t reach it, etc. (The bathroom that has the tub is not wheelchair accessible.) Or I bring it to the bathroom with me and put it next to the tub/toilet and then forget to take it with me when I leave and then it’s in the bathroom and I’m not, and I can’t get to it. See how helpful that piece of AT is?

Ahem.

But NOW, I have a working SD. So, today when I wasn’t sure if I needed help getting dressed or not after my bath, but I really wanted my PCA to go make me lunch because our time is limited, I could send her off to the kitchen with the agreement that if I needed her, Barnum would come get her (because I had left the walkie-talkie on my powerchair and also forgotten I had it with me, whereas Barnum’s a lot harder to miss!). And when I stood up and realized yes I had used too many spoons and I needed to get to my chair FAST before I fell over, I could have Barnum open the door ahead of me and skeedaddle out of the bathroom so I could make it to my chair, as opposed to having to sit back down on the toilet, wait for my PCA to come back, help me up, and get to my chair, which would used more PCA time and even more of my spoons. And when I dropped the walkie-talkie (that I’d forgotten I’d brought and therefore didn’t think to use and therefore left it behind), Barnum picked it up and brought it to me. And when I forgot to put on my slippers and they were in the bathroom and I was already in my chair, I could send Barnum back into the bathroom to get them.

You cannot call your bell or walkie-talkie or slippers when you leave them somewhere. Well, you can, but they won’t come. They also won’t retrieve things. They also won’t open doors to get to the thing or person you want.

I love my powerchair. I would be in trouble without it. But sometimes if I am feeling well enough, I prefer to walk to the bathroom, for example. (I try to always use as much energy as I can without overdoing; it’s a very difficult balance.) Sometimes it is fine and good to walk to the bathroom. Sometimes it’s impossible and I don’t try. And sometimes my powerchair is charging or I think I’m doing better than I am, and I discover that I have used too many spoons (especially now that I’m on Clindamycin which means I’m spending a lot longer on the toilet than I’m used to!) to get back to my powerchair, my doorbell, my walkie-talkie, my bed, and I might need my service dog to help me get up and walk back, or to open the door, or to get a human assistant to bring me my chair.

Choices. Having a service dog offers me choices. Because I can choose what needs doing in the moment based on what and how I’m doing and what I need, and I can ask him to do that particular thing, and he can do it nearby or at a distance. He can get and bring the thing or person I need. Because he can think, and he can move all on his own, without a joystick. Though he does bring me a lot of joy.

– Sharon, the muse of Gadget, and Barnum, SD

*I believe that wheelchairs and other mobility aids are generally preferable to service dogs for ongoing mobility needs such as balance, walking, etc., because frequent use of dogs as mobility aids can be physical damaging and dangerous to the dog. If you are a full-time wheelchair user, I think it is better to use a powerchair than to have a SD pull a manual chair. If you need walking assistance frequently, a cane, walker, or chair is probably a better bet. However, sometimes you need both. For example, when I have had my powerchair break down, I have used a manual chair with a SD helping to pull it as an emergency backup measure.

**I realize that some people use human assistants or canine assistants or AT instead of one or the other or both of these, and I fully support everyone having the options to make these decisions because no two situations are the same. Everybody’s situation is unique. For example, I know a lot of guide dog partners who do not use a cane because their guide dog is a far superior navigational aid, and I also know people who use both when training a dog or when an issue arises and people who prefer a sighted aid (person) or a cane. And all of us who partner with assistance dogs have times when we cannot use our dogs — when they are sick or have died or have retired — and we have to make do with AT or people in the meantime. I know people with physical disabilities who use SDs so they don’t have to rely on PCAs or certain types of AT, and I support that, too. In my case, I rely on all three, and I am fine with that, too.

Update: Free Empathy Call, Online Chat & Webcam Chat Details – Oct. 1&2

This is an update to my previous post. If you want to read the details of my personal experience with the call last year, check it out.

A globe brightly covered with the colorful flags of all nations and people that look like paper dolls standing in a circle around the globe holding hands. The 12 people are each a different shade of the rainbow, from red to purple.

Global Connection

However, if you simply want to learn the nitty-gritty of how to attend the call or one of the online events for the United Nation’s International Day of Nonviolence in honor of Gandhi’s birthday, here it is:

In case this was clear before, this is a FREE call. Twenty-four hours of continuous empathy are available to give, receive, or witness. If you would enjoy making a small donation in appreciation of our organizing efforts, we will happily accept, but the point of the call is to make it available to everyone (as someone said to me recently) “as a love offering.” That’s what it is! Free love! It’s priceless. <wink, wink>

Every two hours a different facilitator, or team of facilitators, will be hosting — bringing their own perspectives and experiences to the call. Note: For technical reasons the 24-hour period has been broken up into six (6) four-hour “sessions,” but you can call in (or leave) any time during any “session.”

The call STARTS Monday, Oct. 1 at 6:00 PM EDT

and

ENDS Tuesday, Oct. 2 at 6:00 PM EDT.

(If you’re not in the Eastern US, you can find out when the calls are in YOUR time zone using this time zone converter. If you are more visually oriented, here’s a map of the world’s time zones.)

You do need to register in order to get a call-in number and PIN. Find all the details and register here.

Secondly, the online chat is set up! It will go from noon – 2:00 PM US Eastern Daylight Time (9AM – 11AM PDT or 16:00-18:00 GMT). Click here to enter the chat room. Have questions about the chat? Contact me.

Thirdly, someone else has also now scheduled a face-to-face empathy by webcam for October 2, from 1:00 AM to 3:00 AM US Eastern Time (October 1 from 10 PM – 12 AM US PDT or 05:00-07:00 GMT). To register for empathy by webcam, enter your name and email address at http://www.PANinA.org/Empathy.

If you know someone who doesn’t have web access who would like to register for the calls, please contact me and I’ll get in touch with them by phone.

P.S. It just so happens that Marlena, my wonderful teacher, will be offering a new series of her classes in October. “Healing Listening, Healing Talk” is the name of her classes in Nonviolent Communication for people with disabilities and chronic illness. If you’d like info about the classes, contact me, and I’ll email it to you.

Hope to “see” you on a call or chat room!

– Sharon and Barnum, SD/SDiT who is sooo eager to work because we have not been doing enough training for his taste!

P.S. Yes, I will return to dog blogging again after this!

Public Comments to the National Council on Disability

I was asked by Mary Lamielle of the National Center for Environmental Health Strategies (NCEHS) to call in with testimony to the National Council on Disability (NCD) during their public comment period today, Thursday, July 26.

What is NCD?

NCD is a small, independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. NCD is comprised of a team of fifteen Senate-confirmed Presidential appointees, an Executive Director appointed by the Chairman, and eleven, full-time professional staff.

In its invitation for public comment, NCD noted:

NCD will accept statements on any topic but is particularly interested in discovering what the public believes should be included in NCD’s 2013 statutorily mandated Progress Report to the President and Congress. Individuals interested in submitting public comments may do so in-person or by phone and should provide their names, organizational affiliations, if any, and limit comments to three minutes. Individuals may also submit public comments in writing to PublicComment@ncd.gov using the subject “Public Comment.”

Mary had previously emailed me to ask me to sign on to the recommendations she was circulating in the disability and multiple chemical sensitivity (MCS) community for the NCD’s meeting. These recommendations, which I support, are as follows:

1. The NCD should play an active role in organizing and participating in an Interagency Committee on Chemical Sensitivities;
2. The NCD should examine the significant levels of harassment and discrimination experienced by those with chemical and electrical sensitivities in housing, employment, education, healthcare, medical services, and daily life;
3. The NCD should support federal research on chemical and electrical sensitivities;
4. The NCD should adopt the CDC Fragrance-Free Policy;
5. The NCD should adopt a fragrance-free and healthy, accessible meeting policy similar to that of the Access Board; the NCD should also adopt a policy to limit exposure to electrical devices and frequencies at NCD meetings; and
6. The NCD should support the addition of a Board member with expertise on chemical and electrical sensitivities.

Here is what I will be saying in my public comment by telephone later this afternoon:

My name is Sharon Wachsler. I have multiple disabilities, and I’ve found that not all my disabilities are treated equally even within the disability community. I’m generally able to use my service dog, my powerchair, and a sign language interpreter or the relay without any problems. But when it comes to my access needs stemming from multiple chemical sensitivity, there are always problems. Every year I had to fight my CIL to get a fragrance-free nurse for my annual PCA evaluation. There are no hospitals or doctor’s, speech-language pathologist’s, psychotherapist’s, or CIL offices accessible to me.

I have a close friend who is Deafblind and a lifelong wheelchair user. She has told me on many occasions that having MCS is the worst of her disabilities. She has given up trying to work with case managers, assistive tech providers, and other disability organizations because they do not listen or abide by her needs for products and services that won’t make her severely ill and cause her other disabilities to worsen.

When we had an ice storm in Massachusetts in December 2008, and I had no heat, power, water, or phone for a week, I couldn’t be evacuated; there were no MCS-accessible shelters. Two friends who have MCS were also stranded. One of them suffered hypothermia. The other ended up in the hospital which caused such damage to her health that she was in chronic respiratory arrest for two years afterwards.

Just last week a woman with MCS called me about trouble getting workplace accommodations. I referred her to the DOJ ADA hotline. She said she’d already called and been told, “That’s not an ADA issue. It’s a building maintenance issue.” How many other people with MCS have called the hotline and been told that their access needs aren’t real?

I have stories like this for every day of the year. It is for these reasons that I urge you to implement the six recommendations proposed by Mary Lamielle of the National Center for Environmental Health Strategies.

We are not separate from you. We are a part of the disability community. Our needs must be heard, respected, and accommodated.

If you would like to support the efforts of the MCS community to have our issues included by NCD, please email your comments to PublicComment@ncd.gov and put “Public Comment” in the subject line. Please also send a copy of your comments to marylamielle@ncehs.org. They’re accepting public comments by phone on Thursday and Friday, but if you can’t get your comment email sent by Friday, just send it when you’re able.

If you’re not sure what to say, you can talk about your experience with MCS or electrical sensitivity or that of friends, family members, colleagues — or me! No matter what you say — even if you say nothing else — you can copy in the six recommendations of NCEHS above and indicate your support of them.

Thank you very much for your support!

– Sharon, the muse of Gadget (who had chemical sensitivities), and Barnum SD/SDiT (and blessedly healthy so far)

REPRISE life w/lyme, mcs, cfids: a different kind of typical atypical

This post is for the June Disability Blog Carnival at never that easy. The topic is “Arbitrary” — anything on disability you want people to read. I chose to reprint a post that I wrote in May of 2011, with this new introduction. May is both Lyme Awareness Month and MCS Awareness month, and I was trying to blog a lot on both illnesses that month.

The reason I chose this post is that it’s not at all like my typical posts. As an editor and proofreader, I usually try to have “clean” posts — proper capitalization, punctuation, grammar, and spelling. In this post, not only did I not conform to standards, I actually stopped myself from backspacing to eliminate errors, something I normally do a great deal. I didn’t do this to be annoying. I did it for two reasons, and I’m reposting it for a third.

One reason is that when you’re severely in pain and exhausted, things like holding the “shift” key and another key at the same time to create a capital letter, or needing to take a hand off the keyboard to move the cursor and then get that hand back on the keyboard to correct an error, can be too darn hard. That effort often keeps me from writing. I really wanted to blog that day, and I didn’t want my pain and illness to stop me. This was me saying, “Fuck you,” to my limitations, and to the tyranny of internalized ableism.

The second reason is that I do a great job of “passing,” especially in written form, around my cognitive impairment. People who are not part of my day-to-day don’t understand — and often, really, don’t seem to believe — the amount of cognitive impairment I have. Being basically smart, well-educated, and articulate, I have more to fall back on than someone who didn’t have these benefits. Also, there are tools like spell-check and grammar-check, both of which I use. I usually reread a post, sometimes several times, to fix errors, and I do a lot of backspacing to fix errors I find in previous sentences.

However, the biggest toll that my disabilities take on my blogging is in volume, frequency, and organization. I tend to write really long posts, and that’s often because I can’t keep track of what I’ve already said. I often make the same point repeatedly because I’ve forgotten that I’ve already made it. I start posts, run out of spoons, plan to finish them another time, and then never do — because I’m too sick. Because I’ve forgotten the point of what I wanted to say. Because I’ve written another post on a similar theme, forgetting that I already had something written on that topic. Because the content is no longer topical. I have approximately a hundred partial posts in my drafts bin here. Of course, my readers don’t see all these failed efforts because I don’t post them!

The third comment is for all the writers and other language snobs out there, of whom I am one! I am a total “wordie” (as food is to foodies, words are to wordies — or logophile, if you prefer), a grammar geek, a punctuation nerd. I make no apologies for this. AND, there is a difference between enjoying and finding pleasure in well-written prose, in praising readability, and looking down on people who make errors or who don’t know a lot of the basic rules of grammar, punctuation, and spelling. As a writer, I have a lot of online friends who are writers, especially on Twitter. I can’t tell you how many times I read snotty comments about people who write in all lowercase or people who misspell or whatnot. I wanted to reprint the post below to say, “Hey! There are sometimes good reasons why a person might not use the shift key. There are physical and cognitive disabilities that might make following basic rules of grammar onerous or even impossible. Check your ableism at the door, please! We still may have something worthwhile to say.” I believe the post below does have something worthwhile to say, both because and in spite of the copious language errors.

– Sharon

for an MCS, Lymie, CFIDSer blogger training her own service dog.

i’ve been trying to post every day, partly bec i have so much to say and partly bec my stats go way up when i do, and that’s just so reinforcing!

but when u have lyme and cfids and u overdo by blogging, tweeting, posting on FB, etc., and/or train your dog, then u crash.

this is the other side of the typical atypical day coin. a typical day when i’m super super sick, which is not my typical day anymore.

today is not quite a stuck day but it’s damn close. it’s the kind of day that often follows a good day, like the ones i wrote about yesterday and the day before.

can’t get out of bed (move legs) on my own/transfer/go to bathroom, feed myself, brush teeth, etc.  also can’t speak.

this used to be my typical day, when my lyme was bad. now it’s what happens if i overdo or have chem exposures or don’t get enough sleep, and i have done some of all of that in the past week. then i way overdid it and shaved barnum down last nite w/betsy. i knew i was ovverdoing, as the pain and jelly legs and vertigo set in during and after, but the ticks have  been so bad, it needed doing and this was the only time, so i just hoped i could bounce back.

so i was long overdue for a slapdown. and here i am blogging, which i shdn’t be.

but i have a lightweight cordless keyboard in my lap, my elbows bolstered, and reclining. i can’t lift a  fork of watermelon into my mouth, but i can type.

i can’t say, “blog,” but i can type.

i’m blogging because it’s hard to be stuck in ur brain, unable to speak, surrounded by people who don’t know asl, in pain, etc. i’m blogging because i want you to know what it’s like to have these illnesses, which you never will as long as i blog because that gives a fall sense of how functional i am. the act of blogging belies that i’m too sick to blog.

but i want you to  see wha hppens on the days i don’t blog,or i do but i shdn’t. in fact, when i was writing this i kept abbrev and making typos and fixing it but i have decided now as i finish this up (have  done several sessions w/rest between,jumping around) to leave them bec its so much harder for me if i have to move my fingers off asdf  jkl;

i have already fixed so many typos, so many wrong word choices because my brain doesn’t always connect to what my fingers are typing (e.g., if i think “taller” and right “father”). it’s so hard fo rme to leave the errors — i keep fixing them! – but i want u to see the reality.

my pca fed me watermelon and my protein drink, which we did in shifts, over sevaral hours — it is exhausting bec of chewin g and swallowing, bec if she doesn’t put it right directly into my mouth w/out pausing or waiting for me to make minute stretches forward, it’s even more exhausting. and i can’t tell how to do it diff bec i can’t  talk and it’s too exhausting to try to explain bec nobody who has ever fed me has understood these nuances anyway.

and typing or swallowing or chewing gives me palpitations, makes me dizzy, makes me pant. and breathing becomes more of an effort — the diaphragm moving, the rsise and fall of chest, those are all muscles working.

this is lyme and mcs awareness, too (and  cfids, even if it’s not cfids awaereness month)  — the days when u can’t do most things at all and what u do is a huge struggle. this is so much better than what used to be a typical day, where i wdn’t be able to write this blog at all. when i couldn’t  move my hands sometimes. today i can flop them around a bit, i can click, and i can type , as long as my arms are supported.

being a lyme survivor who is also an assistance dog trainer means overdoing it to try to protect barnum and myself from ticks, from further infection, which means making myself sick, doing too much.

these reminders are good for me because last night in the glow of my overfunctioning adrenaline rush, i thought, ” i really don’t need to be teaching barnum to shut and open cupboards or the fridge or all sorts of other skills i’m planning because i’m doing so well now. but it’s better if he’s overtrained just in case.”

then, today, i needed to pee, and my pca was shopping, and i wished so much that barnum knew how to help me with transfers. and he needed to pee, and i couldn’t let him out, and i wished he knew already how to open and shut doors on cue. but not yet. so we waited 45 mins for my pca to get back.

and i ran out of toilet paper after my pca left, and i knew it was in the cupboard five feet away, but barnum doesn’t yet know how to open and retrieve things from cupboards, and there it is — skills i want to teach for the days i need them, all while hoping i never need them, some part of me believing i will never need them and some part of me remembering all the things i needed gadget to do, some of which i’d trained him for and some of which i hadn’t, when i got lyme. reminding me that i can never trust that i will never  have a day liek that (liek this) again.

he did something interesting today. my pca came in and asked him if he wanted to go for a walk, and instead of bouncing around all happy and heading right fo rthe door like usual, he just looked over at me, which was odd. and i thought, does he know i’m sick, and he’s weighing how much he wants this walk against worrying about me?

i don’t know. i could be projecting. but i’ve never seen that before. sure as heck gadget would  never have done that! but barnum is a very sensitive guy, so i’m not sure.

unfortunately, the nurse had to come today to change my dressing. we were supposed to do a blood draw, but i guess even my blood is too exhausted to move because we couldn’t get blood return.

having CFIDS means i’m too exhausted to have facial expression, so i look like i’m angry or don’t care, when really my facial muscles are too tired and weak.

having lyme means i’m in so much pain that i can’t move 90% of my body because the pain and weakness just takes away my ability to move. it’s hard to get this across:

the nurse (photos below) said, “ur in a lot of pain, huh?” and i nodded, and she said, “u haven’t taken your pain meds today?” and i moved my mask so she could read my lips and said/mouthed, “no i did take them, that’s how come i’m able to be out here” (not in bed), but i don’t know if she understood me bec sometimes when people don’t understand they just nod and act like they do bec they don’t want to make u repeat.

but i always desperately want to be heard and understood, so i signed, “understand?” but of course she doesn’t know asl, but she nodded, so i have no idea if she understood my question.

Barnum lies on a black yoga mat next to Sharon, who is in her powerchair with the back reclined all the way and her feet slid off the footplate. She's wearing a large white mask covering all of her face but from her eyes up. One arm is hanging over the side of the armrest, the other is outstretched on the table where a nurse in a medical mask and gloves is changing Sharon's PICC line dressing.
Nurse visit

i sepnt most of the appt w/my eyees shut and reclining as much as i could, but of course i also wanted to use it as training oppty so i clicked and dropped cheese onto barnum’s mat, but then that was too exhausting so my pca stood in front of mat and dopped cheese after i clicked. i have a box clicker with a light touch.

having MCS makes nurse visits a really big deal. u might notice i’m wearing a mask and a black air  filter on a cord around my neck. that’s because even tho my nurse tries to be fragrance free, she lives with people who use fragrance, so it gets on her. and she sees other patients in their fragranced homes. after she leaves, the whole house reeks, and we keep all the doors shut we can so it doesn’t get into the bathrooms or my bedroom. she sits on a wood chair, never on the sofa or putting her stuff on the sofa, because it would absorb the smells. and i can’t let her into my room bec she would contaminate it, and i need a place i can rest and breathe.

now my pca has brought me “lunch” even tho it’s evening bec i forgot to talk to her abt food until the end of her shift, bec i’m so out of it, and now she’s gone and i’m doing better but not well enough to really be able to food myself, so i try to prop the plate on my chest and overbed table and eat with my fingers a few pieces then put plate on bed and rest.

barnum was on my bed, which he’s not supposed to be when i’m eating. the rule is he gets ignored while i’m eating unless i ask him to do something or he alerts to something, but i have no way to tell him to get off, so i just let him be there. besides, it feels comforting. but this is another reason why i am not the consistent trainer i  wld want to be: sometimes i’m not able to be consistent. i know what i’m doing wrong and there’s nothing i can do about it.

i just realized something. i want u to know this bec it’s  important.

i don’t want u to feel sorry for me. i hate pity, honestly. I want to be KNOWN.

because actually,in this moment  i’m happy. maybe that sounds  hard to believe, but really, despite being so sick today, it’s not a bad day. i’m enjoying watching and listening to the birds ouside my window (have a blog post i’ve been working on about birdwatching and lots of photos.)

i feel content. the pain is not as bad now. i have had help mos to fthe time i needed it today and my night pca will be here later.  barnum has been adorable and actually did a few desirable behaviors. i’mnothaving bad payback (reaction) from the nurse visit exposures, partly bec i have all the windows open bec it’s warm today.  a barred owl has started its strange call (they are active during the day – strange birds).

i feel satisfied and glad i was able to do this blog.

i got to listen to a  phone call  (it’s a class — NVC — and i couldn’t say much but i was included, nonetheless; theyh’re my community, everyone else is chronically ill, and i can just listen and be part of it and know i have companionship). i got to tell a friend i love her.

and iknow this will pass. this is my body wisely saying, “sharon! chill the fuck out! stop doing so much! lie around and do nothing! stop thinking! stop training! stop  blogging! stop tweeting! rest and sleep as much as u can. dammit.” after i post this, that’s what i’ll do. because lyme and mcs (and cfids) awareness means people knowing that those of us who enter thepublic sphere in any form, including internet, are making a CHOICE to do that and not do other things, or to suffer physically as a result.

and it means trusting u all, which i do, ur wonderful, to still be there when i get back when i am not posting everyday and trying to be someone i’m not, someone who doesn’t have cfids, lyme, and mcs. and trusting u to know that i love ur comments, but it’s an effort to reply to them, bec that takes work so if i’m slow or don’t reply, that is why. because i have cfids and lyme and mcs. i treasure them. i smile with almost every one.  my heart is full, thanks to ur support and sue eh’s support and barnum and others.

the migraine is setting in now; my body is pissed that i’m not heeding its call. do me a favor, will u? pls post and fwd this link to everyone you think could stand to know about lyme, cfids, and/or mcs. because i’m not up to it, and i know you get it now, because you’ve  seen me at both ends of my spectrum. thank you.

this is me. radio silence.

love,

sharon, the muse of gadget, and barnum, quietly concerned sdit

Quick Update: Auction Moved to March

The feedback we’ve gotten is that people need more time to get item listings to us. So, we’ve pushed back the fundraiser for my NVC teacher a month (in part not to conflict with L-Squared’s auction). Marlena’s Teaching Fund auction is now scheduled to go up Friday, MARCH 9.

This means we’ll need to get all item listings by Sunday, MARCH 4.

Thank you very much for your help! All the other information from the previous post about Marlena’s Teaching Fund auction remains the same. Thank you for your help!

– Sharon, the muse of Gadget, and Barnum, bored and “neglected” SDiT (Why are you always staring at the glowing box?”

Seeking Auction Donations

I’ve written occasionally here and at my other blogs about my study of Nonviolent Communication (NVC) for the last year-and-a-half. I’ve written here about NVC being the major factor in being able to grieve Gadget, and spending the Jewish New Year with my NVC friends, and on how NVC has changed how I communicate about grief. I’ve blogged about it much less than I have wanted to, however. Partly, this is for the usual reasons I blog less about everything than I want or expect to — I’m sick, I’m training my own service dog, I trying to write when able.

But there are other reasons. One is that since that life-changing international NVC phone call at the beginning of October, I am trying to attend as many NVC practice groups and classes as I can. (Note: Whenever I refer to attending NVC classes, they are always by telephone — conference calls.) Although this has absorbed energy — the time spent on the calls and then the time recovering — they give me so much. I feel a new sense of peace, calm, and happiness and an ability to have compassion for myself and others that I didn’t have before.

I actually had wanted to take NVC classes several years ago, but they were offered in a space that was up a flight of stairs and not MCS-accessible. Then I found an NVC teacher who has created an option for NVC classes that are financially and physically, mentally, and emotionally accessible to people with disabilities.

Meet Marlena

The person most responsible for this change in my life is my NVC teacher, Marlena Willis. Marlena lives with both mental health disabilities and physical disabilities, including MCS. A couple of years ago, she decided to offer NVC teleclasses to people with chronic illnesses and disabilities. We became a tight-knit community, most of us living with multiple disabilities, often homebound, and struggling with very difficult situations.

Read what Marlena’s students say about how her classes have changed our lives.

Because she wanted to make sure that anyone who wanted to learn could attend, Marlena offered the classes on a sliding scale and said that nobody would be turned away for lack of funds. Most of us have been able to pay little — much, much less than what Marlena’s time and skill are worth to us — and some have been unable to spare anything for tuition.

Marlena laying on her back in bed. A black-and-tan short-haired large-breed older puppy -- maybe part Doberman or Rottweiler -- wearing a pink collar is licking her from her chin to her eyebrow. Marlena's eyes are closed and her hand rests on the dog's chest.

Marlena's dog loves her as much as her students do!

In the last few months, Marlena has entered financial crisis. This was the result of several unexpected medical expenses not covered by Medicare or MediCal, plus the unexpected expenses of her rescued dog and cat, who are very important to her mental health. For this reason, Marlena’s students are doing a fundraiser for her, which I’m organizing. We are doing it as an online auction. I would so much appreciate your help in making Marlena’s Teaching Fund auction a success so that Marlena can get the dental work done that she needs and continue to teach the NVC classes that mean so much to me and my dear friends.

Find out more about Marlena (my interview with her) here.

If you would enjoy contributing to the success of the auction, here are some ways to help!

  • Donate an item to auction. This is the most useful and important thing we need right now. It can be any item, product, or service that someone else would enjoy. Even if you think you don’t have much to offer, you probably do! I have more notes about this below. Please keep reading!
  • Spread the word! Follow me on Twitter at @aftergadget and retweet my auction-related tweets, or share my posts on your Facebook page.
  • Ask friends, family, social or business networks to donate an item. Do you know someone who has a business, either online, like an etsy shop, or anything else, who would appreciate some publicity while giving something small that will make a big difference in someone’s life? Ask them to donate a service or item.
  • “Like” the Marlena’s Teaching Fund Facebook page! Before the auction starts, we can use it to organize and gather info on items to be auctioned. When the fundraiser is underway, we’ll use it to post updates or feature certain items or list quotes from how Marlena has changed lives.
  • Link to this post. Offer a signal boost. You also have my permission to cross-post this post as long as you attribute it to me and link back here. And you’ll probably want to write some sort of introduction so people know you’re not me!

What Items Can Be Auctioned?

All sorts of things! They can be tangible goods or they can be services. Below are some categories of things we can really use.

  • Unique or beautiful things: Jewelry, photos, artwork, hand-crafted items, specialty or homemade foods (that travel well), films, music, or books donated and signed by the artist/author, tickets to sports/theater/exhibits.
  • Useful things: Dog or cat toys or products, clothing, housewares (kitchen, bath, bed, etc.), hair combs or sticks, hobby/recreation stuff (knitting, crocheting, photography, games, gardening), posters, cards, gift certificates for anything/anywhere! (Did you get something for your birthday or the holidays that’s perfectly good, but that you just can’t use?)
  • Items of interest to ill or disabled people: Unopened supplement bottles, books on living with chronic illness, disability culture or humor, massage or body work, meditation or yoga instruction (live or on CD or DVD), assistance dog gear or lifestyle stuff, videos educating others about your illness or disability rights.
  • Items of interest to NVC people: NVC books, CDs, or DVDs; BayNVC merchandise; giraffe things (puppets, ears, jewelry, prints, bags, decor); empathy session; coupon/gift certificate for a free workshop or class.
  • Services: The sky is the limit! If you have a skill or passion, chances are someone is interested in learning from you or taking you up on your talents. Editing/proofreading; writing; graphic design; cupcake decoration; astrology; Tarot reading; NVC empathy session; dog training (in person or by Skype); photographing your pet or food styling; bicycle, wheelchair, or car repair or maintenance skills; counseling; gluten-free cooking; life coaching; blogging; how to write a synopsis or query letter or create a portfolio; animal communicating; a or presentation on creating access or what it’s like to live with your illness or to be partnered with a guide dog. You can specify if this is something that can be done by phone, internet, or in person. If you have an idea, bring it, and I bet we can make it happen!

Things to Keep in Mind

  • The purpose of this auction is to help Marlena and allow her to continue teaching NVC to people who really benefit from it and would otherwise not to be able to access it. However, if you have any sort of business — an online store, a consulting business, teaching, etc. — this is also a way to let more people know about you, your services, or your products. All listings of donated items will link to the donor’s website and include their logo or image and a blurb about what they offer. It’s part of our way of saying, “Thank you.”
  • Unless they are antiques or collectibles, tangible items (products, goods) must be in new or like-new condition.
  • Tangible items will be shipped. Whoever donates the item will also be donating the shipping. So, if you’re choosing between sending something heavy or bulky (like a big, hardcover book) or something lightweight (like a silver necklace), you probably want to choose the small, lightweight thing. You’re free to choosing the easiest, most inexpensive shipping option you like; we are not FedEx!
  • Services have many advantages: 1. There is no shipping cost involved. 2. If it’s something you can offer by phone or internet, this usually means it can be bid on internationally. 3. If it’s something you can offer to a group (a workshop or class), we can take several winning bids on one item.
  • If your service or product can only be offered to those in your local area, please indicate the area (e.g., open to bidders in the SF Bay area only, or open to those in NYC only, etc.).

If you would like to donate an item (product or service) to Marlena’s Teaching Fund, here’s what to do:

Contact me as soon as possible to let me know you’re donating something. Please include as much of the following information as possible:
1. A description, which can include things such as materials, size, weight, number, handmade, etc. (Unless I can lift this from your website or a mass-market site, like Amazon.)

2. Any background on you or your product that makes it more appealing (or, again, if this is on your website, let me know, and I’ll get it from there).

3. Your website, shop, blog, Facebook page that is associated with your donated service or product.

4. An image to accompany the description (unless it’s something I can lift from your website or from Amazon, etc.). If it’s a product, send a picture. If it’s a service, your logo or a picture of yourself or something is great. If you are willing to include a text description of your image, that will save me a lot of energy on adding alt tags, but it’s fine if you don’t.

5. The retail value of the item (unless I can find that online). If it’s a one-of-a-kind that doesn’t have a retail value, just take a guess.

6. Whether there are geographical restrictions on who can bid (in USA only, in Canada only, in North America only, in your city only, anywhere in the world, etc.).

7. If this is a tangible item, if you know whether it’s coming from an environment that is smoke-free, or fragrance-free, or pet-free, please indicate this (it doesn’t have to be all three, e.g., if it’s coming from your smoke-free, pet-free home, say so; if it’s coming from your fragrance-free home, say that. If you don’t know what it’s been exposed to, leave this out).

NOTE: If you know you want to donate something, please contact me as soon as possible so I can start a listing — even if you don’t have all the information yet. You can get the rest to me as you are able.

The auction is scheduled to go up Friday, MARCH 9, so I’ll need all item listings by Sunday, MARCH 4 at the latest.

How to get your information to me:

Thank you so much for your support!

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

P.S. If you use email to contact me and don’t hear back within 24 hours, it probably means your message went into my spam folder. Please try again, preferably using one of the other contact methods.


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