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.

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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


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