Archive for the 'People I care about' Category

Guest Post: Mom’s Theoretical Surgery

My mom sent me this essay, and I thought it was really fun. I asked her if I could post it here, and she said yes. Now you can see where I get my writing style and sense of humor. Also, I thought it would be a nice change of pace to read about healthcare (and health) going well for a change! Enjoy.

– Sharon and Barnum, celebrating Interdependence Day (that’s not a typo)

Was Surgery the Only Option?

by Doris Wachsler

June 28, 2012
3 P.M., at home

5 A.M. We’re both awake. We look at each other and snuggle a bit; then I get up. “Why didn’t the alarm go off?” Manny fiddles with the buttons on the clock and says, “I set it for 5 but didn’t pull out the switch.” It really doesn’t matter because I’ve been ready to leave for the hospital since bedtime, about 10:30 last night. Not out of happy anticipation, but “let’s get this over with—what will be, will be.”

We leave for L Clinic Hospital. Hurry up and wait. Apparently the residents of most surrounding towns have been told to report to Admissions at 5:45. I’m there early, but hardly any chairs in the waiting room are empty. People (“customers,” in hospital parlance) are called one by one and told to proceed to “Ambulatory Surgery.” Do they expect us to walk around in the operating rooms during our operations, or is this L’s term for outpatient surgery?

Okay, next step. You know the drill. All clothes off, put on a Johnny that is size 42, extra tall — one size fits all. Lie down and wait for all of the actors in this performance to play their roles. Regulating Nurse (Meredith) arrives first and ushers in my nurse Sandra (“I’ll be with you the whole time”).

“By the way,” says everyone who comes in, “what is your name and how do you spell it? You got that right, do you know your birth date?”

What I tell them corresponds with the info on my wrist band. Concentrating hard on this data, they are relieved that they haven’t bedded an imposter.

A floor nurse begins taking my BP and temp while Sandra rifles through the encyclopedic folder that contains my papers: “You may experience a stroke, seizure, pneumonia or fatal illness during your procedure/stay. L Clinic will not be responsible for anything that happens to you while you are here. Read and acknowledge with your signature.” I signed my permission slip on June 20th, again today at 5:45 and at 6:00. Manny has brought along my Life Care wishes. They are scanned and placed in the tome.

A cute young thing in a floral chef’s hat arrives to introduce herself as the surgery nurse. She darts in and out of my space as quickly as a butterfly. Meanwhile, a jolly, peppy woman in a gauzy hair net appears with equipment. She says she is Marie, and she begins puncturing the veins on the top of my hand, and hooking me up to the bag on the IV pole. “I’m so sorry to be hurting you, dear. I’m one of the doctors on the team, the anesthesiologist, and I am putting xyzilliuminophedoodle, a sedative, into your IV. Yes, it’s really Valium. After the surgeon has come in to talk with you, we will give you meds to put you out. You won’t see, hear, feel, or in any way be in contact with the world.” She wants to reassure me but her manner counteracts the Valium seeping into my body.

“Why are you here?” she asks me. “Oh, like my son — he has six herniated vertebrae but plays football. I wanted Dr. MG to talk him out of the playing, but they just talked about the Patriots and that was it. But you’ll love Dr. MG. He’s great. He’s the best.” This woman with the unprofessional chatty manner is the anesthesiologist — the one who will keep me breathing while I’m being butchered?

Then my nurse Sandra says, “Are you cold, it’s chilly in here. Let me get you a nice warm blanket.” She takes one from the microwave and tucks it in around me. I am warm and comforted.

Between interruptions, we have the “name the medication, dosage and last time you took it” quiz. Several meds have been added to my drug list lately and the doses vary, too. I’ve needed them one day or two, not at all, or always. I am feeling slightly hungry, increasingly druggy, and confused by the bustling of personnel in and around the surgery cubbies around me. Operating rooms begin functioning at 7:30. I see physicians arriving for the other “customers” nearby and wonder when my doctor will appear. It’s now 7:20 and I’m nervous that there won’t be time to talk with him if he arrives late. I’m not exactly sure what I’ll say to him when he comes.

The rolling transport, the caravan of stretchers with IV poles attached and staff in scrubs attending them, is moving past the open curtains in front of my cubby and proceeding towards the ORs. Everybody is leaving and I’m still waiting for the Director of Complex Spinal Surgery, my surgeon, to see me before surgery. The anesthesiologist comes by, the nursing staffs come by, and they all ask, “Have you seen Dr. MG? No? Oh, he’ll be here.”

And suddenly, he is. He smiles, looking completely unhurried. I’ve been waiting to get his opinion on something for over a week. He’s been on vacation. Now I have to ask him or it will be too late. I tell him that in the five weeks since he last saw me I have improved. A lot, I think. Especially in the last week, I’ve had a spurt of energy and don’t tire as easily as I did before. I’ve given up the scooter in the grocery stores and can walk the stairs without hoisting my right leg by clutching the banister.

“I called David, your nurse practitioner, last week while you were away, to ask whether I should go forward with the surgery. I batted the pros and cons back and forth with him, whether I had reached a plateau in my recovery. Was the likelihood that I would improve further after surgery, more so than if just had physical therapy?” (When I had seen David at my pre-ops the next day, he didn’t give me any assurances one way or the other — even said I might be worse after surgery.) Nevertheless, I persuaded myself that I might be back to my former functioning self if I proceeded as planned.

Dr. MG had listened to me quietly. Now he said, “Well, let’s see what you can do.” He checked the strength in both legs, testing a few movements. He looked at me and commented, “I think you’re right. I don’t think you need surgery at this point.” I ask him a few more questions about the disc and nerve. It is possible the disc has been absorbed, he says, and it’s no longer pressing on the nerve. I look at him questioningly. What is the right thing to do, I’m thinking. Dr. MG looks back at me and says, “You’ve progressed so far. If you have surgery, you will begin again and need to recover from the operation.” I’m still not sure; I continue looking into his face. “If you were my family I would advise you not to have surgery. Have you had physical therapy?” I tell him I’ve been eager to do that, whereupon he says he’ll immediately get the form to refer me for therapy.

This has all happened the way I wanted, but in such a hurry. Will I regret my decision or have second thoughts later? Dr. MG is back and hands me the PT paperwork, and as though he is reading my thoughts, he says, “I’ve given you an appointment to see me in six weeks, but if there’s any problem don’t hesitate to call me sooner. If you need it, you can always have surgery later on, but I think this is the right thing for the present time.” I thank him warmly and say goodbye.

I have to agree with Dr. Marie, the anesthesiologist — Dr. MG really is great, the best.

I stride confidently down the hallways and out of L Hospital. Is it the Valium? The afterglow of being cared for capably and kindly? My relief in not going under the knife? The happy look on Manny’s face? Absolutely, all of the above. What a great day! It’s only 8:30 A.M. and I’ve already been admitted to and discharged from L Hospital. The whole day lies ahead.

A couple hours later I make appointments with Back on Track. I can hardly wait for my therapy. I have no doubt at all that these sessions will help me to continue getting stronger.

Feeding Two (or Twenty?) Birds with One Hand

Some twenty years ago, my friend Linda introduced me to the expression, “Feeding two birds with one hand.” I really like this expression. Not only is it kinder than “killing two birds with one stone,” but it’s more evocative. I can actually picture holding my hand out, full of bird seed, and having two birds land on it, whereas not only do I have no desire to imagine killing two birds with a stone, I really don’t know how you’d go about it if you wanted to.

So today’s post is about what I’ve been doing when I’m not here posting, and how this is an opportunity to bring diverse aspects of my life together and feed multiple birds — after all, I have two hands, so I should be able to feed at least four birds!

Many of my faithful readers know that over the last three months I have been working on a fundraiser for my Nonviolent Communication (NVC) teacher, Marlena. Marlena’s Teaching Fund takes the form of an online auction, which starts right this very instant coffee!

Bird 1 – Connection & Contribution

What’s great about this auction? It gives me an opportunity to give back and contribute in a meaningful way to someone who has made a huge difference in my life.

I’ve also gotten to “meet” a lot of wonderful people — friends of Marlena’s or friends of my NVC friends — who donated items to the auction. It feels good to be part of something where people are coming together in a spirit of generosity and love. Nothing to be sad about there!

Picture of a mourning dove on snowy, pebbly ground with lots of sunflower seed hulls around it.

It may be called a "mourning dove," but I was happy to get this picture of it looking at me.

Bird 2 – Increasing Access to Fragrance-Free & Nontoxic Products

Some of my most commented-upon posts here at After Gadget have been those in which I’ve discussed my MCS and/or how fragranced products affect me. Many of you, my beloved readers, have gone in search of nontoxic, fragrance-free products — for your own health, for the access and safety of those with chemical sensitivities around you, and in solidarity with me. This has been so surprising and touching for me!

I also know that many of you have limited budgets, maybe not much access to trying out different products, or live outside the US, which sometimes means different brands than I know about. I am pleased to announce that there are several small, family owned businesses (many of them owned and run by people with MCS) that make nontoxic, fragrance-free products who have donated products or gift certificates to Marlena’s auction! Some of them will ship outside the US! You can test out MCS-safer products while also helping out an MCSer! Check out these listings! (For those who want an inexpensive way to test out several fragrance-free products, I suggest the Magick Botanicals trial/travel kit.)

Hairy woodpecker pecking at suet in a suet feeder on  small tree.

Hunting and pecking for the safe products in the scented aisles of a store? That can get downright hairy!

Bird 3 – Simplifying & Digging Out

I have too much stuff. My house is full of stuff! Stuff collects dust and mold and dander, all of which I’m allergic to. It gets in the way and leaves less room to maneuver my chair. But some of this stuff is perfectly good stuff. Stuff I can’t use, but that someone else could enjoy — brand-new books I was given but can’t read because I can’t read print books. Snarky posters I got as freebies when the company I ordered from messed up my order. Unused nontoxic/natural lip balm with peppermint oil in it. Inkjet office supplies I bought, forgetting that I now have a laser printer. It will feel great if I can give this stuff a new home.

Male red-bellied woodpecker digs suet out of a feeder with his long open beak.

This red-bellied woodpecker is chipping away at the fat, digging out. Inspiring!

Bird 4 – Bird Feeder as Blog Fodder?

I’m never short on ideas for blogs. In fact, my “Posts” folder has almost as many drafts as published posts, and that doesn’t even include all the posts I have in my head that I want to write! Still, now that I’m doing something with a deadline (the auction is only up for ten days), something I’ve invested so much time and energy in, something that’s so important to me, it pushes me to crank out a post to share with the world.

This gives me opportunities, such as to use several of my recent winter bird photos without writing the perfect Birding Thursday post.

I can carry myself with pride . . .

Tote bag in black and yellow that says Pride in big yellow letters on a black background.

This snazzy tote bag is made from recycled bird seed bags!

in taking an old idea like a signal boost and creatively transforming it into something new and different.

Colorful tote bag made from bird seed bags, includes a bright red cardinal sitting on a branch, and a sunflower at the base of the bag.

This tote bag is also upcycled from bird seed bags.

To think outside the box as a blogger . . .

Top of treasure box has head and shoulders of a brown hawk with red wings. There are feathers on teh side of the box.

This is quite some outside of a box!

can give me several different perspectives on something, depending on how I look at it.

A fabric-covered box. The top shows a blue jay in a green leafy tree with a blue feather attached to it, and the side shows a gorgeous white ibis about to take off over stormy waters.

Or how it looks at me....

It’s true that the tone of this post has been tongue-in-cheek and my objective transparent. Nonetheless, I am still appreciative of the seed Linda planted all those years ago of this kinder, gentler way to speak and act, which is part of the work of NVC, for me.

Especially because Linda remains one of my nearest and dearest friends. She’s the one who told me about Marlena’s NVC classes. Taking them together has deepened and strengthened our friendship. Maybe one of you will get to meet her, too?

– Sharon, the muse of Gadget, and a bored and demanding Barnum, SD/SDiT/hindrance dog

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.

We Interrupt this Blog Cuz We’ve Been #Occupied at Home

My blogging friend and fellow chronically ill gal, The Fibrochondriac, recently wrote to me to tell me that I had helped inspire her to get involved in #OccupyTriCities. I will post about that another time, because what she said really blew me away.

It also changed my perspective. Reading her posts about what she was doing, despite her chronic illness, inspired me. (Really, check out this post, especially.)

I have been so excited by the growing Occupy Wall Street and then worldwide #Occupy movement, but also sad that I could not take part. I have felt like finally, the change I have been hoping for since Ronald Reagan got into office (yes, I’m old), is starting to happen! And I can’t do anything about it!

But no, I’ve decided I can do something. There are lots of things people who cannot go #Occupy in an embodied way can do. So I have been trying to gather momentum for #Occupy at Home.

Thus, I’ll be blogging, tweeting, and posting to Facebook from a new address and identity.

Blog: #Occupy at Home

Facebook: #Occupy at Home (please go “Like” the page so it will become searchable)

Twitter: @Occupy_at_Home

Will you to join me? I love that this is a leaderless movement, and the #Occupy at Home movement should be, too. If you would like to be an admin for the Facebook page or write for the blog or anything else, please, please, join in! The more minds, hearts, and bodies involved, the truer it will be to the movement. Also, it is too much work for one person; that’s why numbers count, even for those at home, alone. Because we are not truly alone. We have each other.

I don’t think I’ll be here at After Gadget much for a while. Even I can only do seven or eight million things at once. (Especially if I don’t eat or sleep! And then, I can only do one thing at once: Breathe. And maybe whine.)

Lots of great stuff coming up about disability, chronic illness, the #Occupy movement. For example, I’m putting together a post for the General Strike on Wednesday, November 2. “What?” You say. “How can someone who doesn’t work, who is on SSDI or SSI or worker’s comp take part in the General Strike?” Well, we can!

Join me at #Occupy at Home and find out!

– Sharon, the muse of Gadget, and Barnum, SDiT-on-holiday

Signal Boost: Auction to Sponsor Guide Dog Puppy

The generous and talented L-Squared of the blog, Dog’s Eye View, has been trying to raise money to sponsor a puppy for Guide Dogs of America, the 501(c)3 non-profit organization through which she received her current guide dog, Jack.

She recently put together a fantabulous online auction, all the proceeds of which will go toward the $5000 cost of raising a puppy to be a future Guide Dog of America. When you see all the work that has gone into this site — how beautiful it all is and how many things are offered — you will be blown away.

There is a lot of dog stuff, not surprisingly! Toys, treats, collars, and leashes, etc. There are also baked goods, jewelry, hand-knitted and crocheted hats, mittens, purses, and more, including a gorgeous afghan! Art, photography, cards, T-shirts, etc.

There are various one-of-a-kind items and things you can personalize, such as a photo of your choice on stretched canvas, or individually made postcards. How about getting a T-shirt with a message of your choice in Braille? (Real Braille, raised dots, so to read it, you will have to be felt up!) You can have a short story written about a topic of your choice!

If you like dogs or cats, there is definitely something there for you! And even if you don’t, there’s probably something. So, please stop by. Some bids start as low as $3, and there are many items that have not yet received bids. L-Squared gives so much of herself to the blogging, blind, and assistance dog community. This is a great way to give back!

Here is the link once more: Guide Dog Puppy Sponsorship Fundraiser Auction.

– Sharon, the muse of Gadget (I would have eaten those banana cookies), and Barnum, SDiT (I want the Kong!)

Flashback: Of Grief and Relief

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

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

– SW

When the End of the End Doesn’t End

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Karyn, My Human Partner in the Assistance Dog World

The theme for the upcoming Chronic Babe Carnival is “Best Friends,” and the theme for the upcoming Disability Blog Carnival is “Community.”

I thought I couldn’t participate in either carnival, because I no longer have friends in real life/”meatspace,” and, while I have many online communities, they are quite diverse and often don’t overlap. One of the communities that is newest for me — and a great source of joy — is the assistance dog blogger community.

Although I have been training and partnering with service dogs since 1999 and been a member of — and written articles for — the International Association of Assistance Dog Partners for many years, because my multiple chemical sensitivity (MCS) prevents me from attending any assistance dog (AD) conferences or events, or even meeting other AD partners in my area, I never really felt a part of the AD community, until now.

Now, especially with the success of the Assistance Dog Blog Carnivals, I have connected to AD partners from all over the world, with all types of ADs, both program dogs and owner-trained dogs. I feel a special closeness to several, such as Kali of Brilliant Mind Broken Body, who, like me, is a disability-rights activist as well as service-dog partner, and L-squared of Dog’s Eye View, from whom I learned the daily ins-and-outs of training with a successor dog at a guide-dog school, as well as Ashley, Brooke, Carin, Andrea, and too many others to name. I feel I have a home in the assistance dog world, at last.

However, when I think about who has been there for me since the beginning, and with whom I have shared the most, there’s no doubt that it’s Karyn, of Through a Guide’s Eyes. Karyn has been my best, and often my only, assistance dog friend, for over a decade.

Karyn and I have a lot more in common now than we did when we first met online, most of it associated with loss, unfortunately. But sometimes the strongest friendships are forged out of hardship, and I do believe that one of most compelling aspects of our relationship is how we inspire each other to keep fighting.

We met on a list for people training their own ADs in 1999. I had never trained a dog in obedience or assistance work before, and I had serious doubts that my bouvier des Flandres, Jersey, and I were up to the task. I met a lot of people on the list who provided information and encouragement, but it was a big list, sometimes contentious, and often I felt overwhelmed, lonely, and scared.

Karyn soon started her own partner-training list, which is typical of both of us — if we can’t find what we need, we organize it ourselves — and invited me to join it. That’s when we became friends.

Back then, Karyn’s major disabilities were the ones she was born with, incomplete quadriplegia and hearing impairment, as well as a new one — vision loss — which she expected would progress. She had some stable disabilities and some unknowns, but she was full of energy, very independent, and went out a lot.

Her primary need was for a dog who could help her be safe and mobile in the world with decreased vision, as well as alerting her to sounds and providing physical assistance at home. Her assistance dog, Chimette (Met for short), was a border collie mix from a shelter. Karyn ended up going the owner-training route for the same reasons as me: No program would take us.

Met guiding Karyn across the street. Karyn, a thin white woman with brown hair pulled back into a pony tail, a pale blue button-down shirt and blue jeans, using a black powerchair, being guided by Met, who has longish silky hair, a lanky dog slightly larger than a standard border collie, with brown markings. He is panting, with his tongue hanging out and wearing a leather guide harness. Karyn wears large black sunglasses and is smiling with joy.

Met and Karyn, showing off their teamwork.

In Karyn’s case, this was because of her multiple-disability status. She spent years on a program waiting list for a hearing/service dog. When she realized she’d need guide work, too, and decided the program might never take her on anyway, Karyn took matters into her own hands.

In my case, programs would not accommodate my MCS. After being rejected by the only program that seemed like a possibility, I, too, decided to go it on my own.

Because our disabilities were so different, so were our lifestyles and the tasks we needed our dogs to do. I had MCS and chronic fatigue syndrome/mygalic encephalomyelitis (CFS/ME). I was ambulatory within my home, but had to spend most of my time resting. I used a mobility scooter on the rare occasions I went out. I had to avoid going out as much as possible, because exposures to chemicals used by the rest of the world made me sick. I wanted a service dog to help me save energy and avoid exposures at home, and to assist me in occasionally going to the store myself, something I hadn’t done in years.

I also needed a hypoallergenic dog that was happy to spend a lot of time snoozing. Karyn needed a dog who could learn a huge number of skills and keep sharp for extended periods. Therefore Karyn adopted Met as an older puppy from the shelter, and I got Jersey, a phlegmatic five-year-old former show dog, through breed rescue.

Jersey eyes Sharon

Jersey and me in her golden years, circa 2003

[Photo description: Jersey, with a silky black coat and cropped ears, sits in profile, her head turned toward Sharon. Jerseys fall covers where her right eye would be.]

The beginning of my relationship with Karyn was mostly that of a mentorship. She had the experience I lacked, and I was eager for information and support. She helped me find books and articles on training your own service dog (SD), places to buy SD equipment, and encouraged me to try new methods (including a weird new tool called a “clicker,” which I resisted!). Perhaps most important, Karyn helped me believe in myself and Jersey. She both encouraged me and led by example. After all, if she could train her first assistance dog herself, and teach him guide, hearing, and service skills then what was stopping me?

Not too long after I joined Karyn’s list, she developed MCS, and our roles reversed. Suddenly, the ways she’d structured her life around her other disabilities were thrown into disarray by the limitations imposed by MCS. In this new realm, I was acting as a resource and support, providing information and referral for fragrance-free products and instructions on how to detox and avoid exposures, and offering a virtual ear for her grief and frustration.

Another unfortunate experience we soon came to share was having SDs with significant health issues. Met had a number of health issues, including allergies and sensitivities, as well as epilepsy, all of which Karyn managed with incredible care and dedication, reading every book, researching any treatment, and joining any list that might help her assistance dog stay as healthy as possible. He struggled with health issues all his life, and it was a balancing act that Karyn was never free of until he died.

View from behind of Met guiding Karyn down the side of a suburban street. Met has black, silky fur and a nylon harness with royal blue. He has long, lalnky legs. Karyn's long brown hair is i na ponytail. Her powerchair is black, with a red bag hanging on the back of the seat. She wears a long-sleeved blue shirt that matches Met's gear. There is a tall black fence just past some sparse grass on their right, and above are a row of trees, mostly bare except for red leaves. The sky is blue. It looks like a beautiful fall day.

Met and Karyn set off to do errands.

In my case, soon after Jersey graduated from service-dog-in-training to SD, she developed glaucoma, and lost an eye. However, like Karyn, I decided to see what my dog wanted to do — retire or continue working? She chose work. Of course, Karyn was supportive.

Having another SD partner in our lives who understood MCS also came to be valuable to both of us. We could discuss how to make a dog shampoo that was safe for us or gripe about strangers who got their fragrances on our dogs. Karyn provided true practical assistance to me, as well, combining her incredible ingenuity, craftsmanship, and generosity with her care for my health: she constructed and mailed me SD equipment designed especially for my needs. One example is this amazing SD leash, which connects to a waist belt she also made.

A black belt made of nylon webbing with a D-ring on each side and a plastic quick-release buckle attached to a complex leash of double-thick inch-wide nylong webbing. One section is 28 inches, with heavy-duty metal easy-use clasps on each end, and a D ring three inches from the base. The other half of  the leash is 28 inches in two pieces, with a metal square as a "hinge" and at one end, and a metal clasp at the other.

Of course I asked for black. It goes with everything!

Knowing that the materials were coming from a non-scented environment, and having them arrive wrapped in aluminum foil (to prevent contamination during shipping), was a huge bonus.

When I moved into a new home and needed to modify the door handles, Karyn created and mailed over twenty door-pulls for Gadget to use to open and close my doors (closet doors; bathroom, bedroom, and refrigerator doors; doors to and from the outside), and later, pulls for cupboards and drawers, too.

A door  with a metal door lever with a red nylon webbing pull attached. It has a knot in the bottom. Next to the door is a cupboard, with a cabinet door and three drawers. Thin, turquoise nylon pulls hang from the cabinet doorknob and the knob of one of the drawers.

I have door pulls to match every type of door or drawer, color-coordinated with the decor of each room!

Then, I got Gadget, a one-year-old bouvier rescue, to train as successor to Jersey. By then, Karyn and I both had a lot of wisdom to share with each other. We both had converted to clicker training. We both had trained our first dog. Unfortunately, Gadget, like Met, was plagued by lifelong health problems. However, also like Met, he was a fantastic service dog. Met was Karyn’s heart-dog, Gadget was mine.

It never occurred to me to retire him. He loved work, and I loved working him and having his assistance. Because Gadget and Met shared so many similar health issues — vaccinosis, drug sensitivities and food allergies, and a related tendency toward seizures — I relied a great deal on Karyn’s knowledge of alternative veterinary care to keep Gadget healthy.

Gadget runs with grocery bag from van/end of ramp

Gadget was an amazing service dog.

In 2007, two major changes took place in our lives: Met died, and I got Lyme disease. Jersey had died almost exactly a year before Met. Although I was sad, and I missed her, her death was not traumatic. She had been retired for several years; Gadget was working like a pro; Jersey had lived past the breed’s life-expectancy; and she did not have a long, drawn-out illness. I also had my family and friends, my personal care assistants (PCAs), my human partner, and most importantly, Gadget, there to support me.

Karyn’s loss of Met was another story. She did not have a successor dog already trained. She lived alone and didn’t have the supports I had. Met had been her everything, and I was deeply concerned for her. For as long as I’d known Karyn, she and Met had been a team, and I worried about how she would cope without him, not just in terms of the loss of increased independence and mobility that Met had provided, but as the emotional center of her world.

Of course, I didn’t give Karyn enough credit, because she has been a survivor of hard times her whole life. Two months after Met passed, Karyn adopted Thane, a red and white border collie. It was a hard time for Karyn — raising and training Thane in the wake of her grief. He was an adolescent and had some of the typical behavior challenges that come with adopting a young dog, as well as health problems that Karyn had to play detective with and solve, as she had so often for Met.

A young border collie, with a medium-to-short coat, reddish-brown and white. He is lying on the floor chewing on something.

Enter Thane.

I was not able to be as much of a support to Karyn as I wanted at that time. Lyme disease took over and ravaged my life, leaving me with almost nothing to give. I was in excruciating pain, immobilized, affected cognitively and psychologically. Karyn later told me she worried she was losing me, too.

Thus, we developed additional commonalities neither of us would have wished for — new or worsened disabilities. Karyn’s vision and hearing both deteriorated, as she became deafblind. I went from being a part-time wheelie to a full-time chair user and experienced for the first time what it was like not to have the use and control of all my limbs. Having a friend who understood first-hand what this was like — someone who “got” what a catastrophe it was when my powerchair didn’t work — yet who never treated me like a freak or a tragedy for having multiple disabilities was very comforting.

I also lost the ability to speak most of the time. Because of being hard-of-hearing/deaf, Karyn could definitely relate to my frustrations with using TTY relay to make calls. She was one of the few people who was easy to talk to on the phone, since she used a TTY, too.

At this time, too, our shared philosophy of “overtraining” our assistance dogs really proved itself. We’d both trained Gadget and Met to perform extra skills that were “just in case” — skills that, most of the time, we didn’t use. But disabilities — and their attendant pain, fatigue, or chemical exposures — can be unpredictable. Some days those “frivolous” skills were downright necessary, and now we were both in a position to realize just how much we needed our dogs.

Karyn missed very keenly all the assistance Met had provided — not just the obvious skills, like guiding, but some of the occasional behaviors, too, as well as just basic house manners she’d taken for granted. It was an incredibly hard time for her, struggling to get Thane on track while missing Met so much; I read her emails with interest, but was often too sick to reply. Knowing her deafblindness was progressing at a fast and unpredictable rate, Karyn rushed to get Thane’s guiding skills established above all else. I hoped that she knew how hard I was rooting for her and Thane.

In my home, meanwhile, Gadget was performing many of those “bonus” behaviors every day. Because of my speech problems, the effort of having trained manual and voice commands for all Gadget’s skills also now paid off in a huge way. I relied on him more than I ever had. At my sickest and loneliest, my least functional, Gadget became my everything. He helped me survive.

Then, just as I was starting to improve, Gadget got cancer. Near the end of Gadget’s life, two years after Met had died, Karyn told me she needed some space from hearing the details of Gadget dying. It reminded her too painfully of Met’s downward spiral. I’ll admit, I felt particularly sad and lonely, not having Karyn’s support, but I appreciated her honesty.

Then Gadget died, and I was beside myself. Some days, I thought I would just explode into pieces. Karyn was truly there for me.

When I was grieving Gadget, Karyn knew better than anyone else the utter desolation of having lost my assistant, heart-dog, partner, and companion. The bond between a person and the dog they’ve trained to make the world more navigable, less exhausting, less pain-filled, is one that few can grasp. The rending of that bond is terrible and impossible to convey. Only someone else who has suffered such a loss can truly comprehend it.

To this day, I don’t expect true understanding from most people about my ongoing grief over Gadget’s death, except for Karyn. It’s a loss of a part of ourselves. Our furry boys had assisted us, day in and day out. They were at our sides all the time. We had trained and learned with them, fitting their skills to our particular needs and styles; so when we lost them, we lost our students and teachers, as well as our friends, companions, and assistants.

Likewise, when I got Barnum, the bouvier puppy I hoped would be Gadget’s successor, and was full of both fantasies and fears about his ability to grow into a service dog, Karyn understood. When I was buffeted by grief and my inevitable disappointment that Barnum was not Gadget, Karyn understood that, too. Karyn didn’t judge me for my frustration, anger, confusion, and grief that Barnum was not Gadget. She knew the desperation of needing a trained service dog now, and instead, having to respond with patience to a puppy who was taking every last drop of energy and goodwill I could muster.

By now, Thane is an accomplished guide dog and has some service and hearing skills under his belt, too. Karyn continues to hone their teamwork and expand his repertoire.

Thane in a red nylon guide harness, crosses the street with Karyn. There is a full canvas bag hanging off the back of her chair, suggesting that they are heading home from shopping.

Thane knows his stuff these days!

A continent divides Karyn and me — with her in Oregon and me in Massachusetts, and neither of us able to travel — yet we have spoken on the phone, even though I couldn’t speak and she couldn’t hear. She sent me a video of Met and her working together, which gave me the idea to make a video of Jersey and me, which I sent her. (Unfortunately, I also sent it to other people, who didn’t return it, so I don’t have any video of Jersey.)

Karyn still sends me pictures, and I try to describe my pictures and videos of my dogs so that they have some meaning for her. We have supported each other through celebrations and losses, triumphs over adversity and deep despair. Between the two of us, we have dealt with more disabilities and health conditions than you could imagine!

For a dozen years, through big differences in our disabilities, where we lived, who was in our lives, and five different dogs between us, she has been the one constant in my online life. I am so grateful to her for everything she has given me, knowingly and unknowingly, the role model she has been, and the confidante. This is my love letter to you, Karyn. Thank you.

Karyn sitting indoors, a laundry basket behind her. Thane is wearing a magnificent cape of powder blue, with reflective white stripes, which extends from his neck to his rear, and which has a metal guide handle extending from the left side of his back. He is on his back legs, with his front legs on Karyn's lap, looking straight up into her face, as if he is just about to kiss her. Karyn is laughing and talking to him, with her hands on his ears.

Karyn and Thane enjoy a moment of mutual adoration (Of course Karyn made all of Thane's gear!)

– Sharon, and the spirits of Jersey and Gadget (thank you for making her a better handler, trainer, and mom for us, Karyn!) and Barnum, SDiT (forevermore trying to catch up to Thane)

“Team Gadget” Now in Effect!

Please click here join me and Team Gadget!

– Sharon, the spirit of Gadget, and Barnum, bored SDiT?

P.S. See? I can write short posts.

Elizabeth

I keep deciding I’m going to save my energy for training Barnum and getting my writing career going again, and then things come up. Things like deciding to try to save someone’s life.

For months, I’d heard from friends about a good friend of theirs, Elizabeth Chalker (many of them call her Lizzy), being desperately ill, and how she was dying because they couldn’t find a doctor to treat her.

Well, I’ve been there. When I was really sick, first, doctors thought I had Lyme disease. Then, they decided I was too sick to have Lyme, that it must be something worse to be this horrible, something they didn’t know about. Some of them told me to go away and get diagnosed by someone else, because they didn’t know.

Then, other doctors knew I had Lyme, but because it was such a severe case, because I was so sick and it was so complicated by my other diseases, they said they couldn’t treat me. It was too risky. They didn’t want the responsibility if something went wrong. So, my friends and family thought I was dying.

Looking back, I realize I was dying. At the time, though, I refused to believe it.

So, I thought I understood Elizabeth’s story of isolation and unbelievable suffering and inability to find medical help.

Then I visited her website.

I saw her “before” picture:

Tall woman with long wavy red hair smiles at the camera in a black mortar board cap and black gown with green, white, and blue robe indicating advanced degree and holding a black folder presumably containing her diplomas.

Then the “after” pictures:

Close-up of a woman whose face is gaunt and emaciated. Her eyelids are half closed; it appears as if she’s not able to open them all the way nor that she has control over her other facial muscles, which are slack. Her hair is brown and limp. The picture is taken from above, with a pillow behind her head.

I thought, “That’s terrible. I really hope people can help her, but I’m so done in already, it will have to be other people. I don’t know her. People who know her will help.”

More time passed. A friend asked me to help. I made the tough decision to put my needs first.

Yesterday I got an email from a friend of Lizzy’s. She pleaded for help for her. She said, “Just watch this video.”

I watched the video — which another friend made about her, and I changed all my plans for the week.

I was wrong. Her story is so much worse than mine.

This is the video, below. It was very hard for me to transcribe because I frequently had to stop typing because I was crying too hard. It’s very painful for me to watch, because I know that if I hadn’t gotten treatment three years ago, I’d be in Elizabeth’s shoes. Or I’d already be dead.

Honestly, I don’t know how she’s not dead. That’s what doctors keep telling her, too: “You should already be dead.” Really comforting stuff for her to hear, I’m sure.

This is the transcript of the video.

(There’s no dialogue in the video, so it’s accessible to Deaf and hard-of-hearing viewers. The only audio is a song.)

She has had nobody — nobody — in her life except a good friend, Corey, who told me that Elizabeth is “a daughter to me,” who visits when she can — and Elizabeth’s dog, Symon, who — as I discovered from the video — died recently.

She is in bed around the clock, and she is dying, absolutely, unless she gets help. Her organs are failing. Without medical care, she will be dead. She is a devout Christian, and she has held on through “raw faith,” even writing a book about her struggle to survive, focusing on faith. She has asked her God to take her, but she’s still here. I don’t believe in God, and I still cry when I read about that. I don’t know why.

Because so many other people with Lyme who have gotten to know her over the years via the internet (which she is much too sick to use now) care about her, or just care that she is a person who needs help, she now has a chance. A specialist was found in Maryland who has agreed to treat her. It was very difficult to get an appointment with him, but it is booked for next week.

Hotel reservations are made, plans are made. Dozens of people have been working tirelessly to get her to this doctor. The problem is that the only way Elizabeth can travel is by air ambulance or nonstop charter jet. She’s too sick for anything else.

The people working on this tried for months to get a foundation, a celebrity, one of the mega-churches to help. To donate a plane. Nobody was interested.

They approached the charities that fly people for medical care for free, and would you believe, Elizabeth doesn’t meet their requirements, because she’s too sick? For example, one requires that patients be ambulatory and be able to switch planes.

So, I won’t be answering comments or posting blogs for the next few days (although a new — and fun! — post goes up tomorrow that I wrote a few days ago and scheduled to post on Thursday), because I’m hoping by this Sunday, June 19, Elizabeth will be on a plane bound for Maryland, to get the help she’s been seeking for years. Before it’s too late.

Training my service dog is important. Blogging is important. Writing interviews of people with MCS, and writing lesbian erotica and all my other writing is important. But saving a life? I can’t NOT do whatever is in my power to help make that happen.

So, I’m writing this blog.

I’ve also written a press release, which is something I haven’t done in nine years. I had to refresh my memory about how to do it by using internet “how to”s. My brain hurts.

I’ve just received word that the fact-checking is done, so we can start using the release. If you have experience contacting the media (newspapers, magazines, TV shows) and/or you have any media contacts, please get in touch. I could use the help. Here is the press release.

I emptied my PayPal account. I contacted a friend who knows pilots who is in Florida. She is trying to find someone who can donate a plane or their time as a pilot. And I’ll be writing another post, at my other blog, which I hope you will read, too. That will have to wait till after an eye doctor appointment (and recovery time) tomorrow. I’ll post a link when it’s up.

When this is over, and Elizabeth is on the road to recovery, I hope to get a chance to speak to her. I hope she, like me, is able to look back on the time she was dying and be so grateful that things are so different now.

– Sharon, the muse of Gadget, and Barnum (so bored AGAIN! SDiT?)


Receive new blog posts right in your email!

Join 574 other followers

Follow AfterGadget on Twitter

Want to Support this Blog?

About this Blog

Assistance Dog Blog Carnival

Read Previous After Gadget Posts