One of the first things I’ve learned with Gus and his megaesophagus is not to join support groups. These groups are valuable – they experiment, share successes, offer emotional support. They also are consumed with the American disease of shaming people who disagree, undermining veterinarians and other experts, and telling people what to do.

 

Brenda (not her real name) was quick to tell me what to build, buy and do. She knows nothing about Gus or me or Maria, but she is sure she knows what to do, even as we begin the process of understanding this disease and studying how it affects Gus. Many of the things she is telling me to buy might or might not be right for Gus, but it is too soon and too smug for me.

Wrote Brenda: “He needs to wear a Procollar at night to keep his head higher than his stomach.. And a Bailey chair would be a good idea – best not to wait until he has difficulty standing on his hind legs to start. And he may be stressing his joints”

Notice the absence of qualifiers: “perhaps,” “maybe,” “you might want to consider…”

This is the voice of the person who knows and is comfortable assuming that I don’t know. Not only is she prescribing hundreds of dollars worth of treatments that work for some but not for many, she is assuming the posture of a vet – absolute diagnosis, certain prescriptions. Only she has never seen the dog and knows nothing about his symptoms. That is the big difference.

As of now, we need none of these things, and even if we do, there are many good choices and alternatives to them.

I was touched by the message from Tracy.

She has a different dog and experience than we have so far, or so it seems but it is very helpful to read this message, because it is not demanding or intrusive and she captures the strange nature of ME, and the sadness and resignation that comes with accepting it.

I take issue with her assumption that her dog is bored without treats. Dogs have lived for thousands of years without rawhide or treats, and if they are loved and active, they do not get bored or restless. Many happy dogs live without any kind of treats, a corporate invention aimed at removing us from our money. There is no strong medical reason for treats, that is something we feel we need to do to feel good about ourselves.

I believe I always need to work to separate what I need from what they need.

But I appreciated Tracy, I though hers just the kind of message that is both appropriate and designed to be helpful, rather than to tell me what to do.

Tracy: It is certainly a strange and awful thing ME. And as you are finding, trial and error. Like you I am new to this and there are good days and bad days. My ridgeback will have to live with this,she is turning 12 and recently diagnosed. I hope that it turns around for Gus, as you know it can. If not I wish him a long life living with it, as is possible. Her deal is not losing too much weight. I will share that her biggest struggle is water. So, that is only allowed when we are around and only small doses at a time. Sadly, she has to give up any dog snacks and rawhides too. It’s a bland boring life for her, but she is doing well. All the best on your ME journey.

We also are pulling up the water bowls in the morning and monitoring weight. So far, he hasn’t lost any. Our big revelation is that Gus only has this regurgitation problem in the morning, not in the afternoon or evening, and only after the first meal, not the second. It seems an acid reflux problem to me, but we are meeting with the vet on Friday to talk about it.

And I did appreciate the message sent by Kim and many others:

I just want you to know how much I enjoy reading your blog and appreciate your candor. I see that social media is both a blessing and a curse. It seems to create a false sense of intimacy. It also seems to have created a false sense of “importance” for lack of a better term. Many people now think they are “experts” in whatever. Frankly, I don’t know how you do it! I would have thrown up my hands long ago. Thankfully, for us loyal readers, you persisted! All my best to you and Maria.

Truthfully, apart from the arguments about messages on social media, in my mind, the only thing I can really say when someone else shares their troubles is what Kim wrote above. I’m thinking of them and wish them well.

Social media is a blessing and a curse for sure, that is it’s fascination. I will never throw my hands up and quit, the medium has been good to me, and I support it. I have never joined the chorus raging about  technology, it makes my life here possible.

It does seem to breed legions of know-it-alls, I think because it is simply so easy to tell other people what they must do. It’s free, and there are no conseqeuences. No one is accountable for their words. I believe I am. My name is on every idea I share.

Megaesophagus is an awful disease, and I take it seriously. But it is not a tragedy or drama for me. Dogs get sick and dogs die, that is the price we pay for the wonderful gifts they bring to us. I accept the trade-off. You will never see my write or hear me say that losing a dog is so hard that I will never get another one. Losing a dog is very hard, I will go right out and get another one, should it come to that. People who really love dogs will always have one if they can.

For me, the challenge is clearing my head of many distractions and focusing on what might work for Gus. We are not yet there.

For days, Gus didn’t spit up at all. This morning, he regurgitated his food three or four times, and we have no clue as to why. This process is just beginning, there are no easy solutions in sight.

That’s why i am committed to fighting for a civil and rational Internet, where people need not be frightened to express themselves and where we all learn the difference between supporting people and taking over their lives.

I have not figured it our yet, or learned to my satisfaction how to handle it, but I will no give up this good cause. I much appreciate the thoughtfulness and compassion in Kim’s post.

Many people do well without the Bailey Chair, they hold the dog upright in their laps if they can, or find ways for him or her to be upright when they eat. They puree the dogs food or feed  him or her a dozen times a day.

We have ordered a wooden feedling bench that will require Gus to stand upright when he eats, I will continue to feed him as he stands up on his hind legs in the very same position as a Bailey Chair. We are holding him in our laps for 10 to 15 minutes after eating.

And we are also talking about what the outer limits of this disease are for us – financially, emotionally, and in tours of our time, independence and other work.

On the support groups, I notice many people are suspicious of vets and encourage supporting their dogs by any means and at all cost. They are willing to devote hours and hours, even full days,  to being caretakers.

We are not. Nor have we reached the limits of what is acceptable to us.

So far, we are very optimistic that we can handle this and keep Gus safe and healthy, and keep us safe and healthy. Bu we are in the first stages of discovery, and we are not arrogant enough to think we know what will be next for Gus.

So the journey begins, and you are all invited. Please don’t be afraid to send me messages. I read as many as I can, and respond to as many as I can. I try to be direct, but never cruel. I don’t always succeed.

But I am not made of crystal and neither or you. Please don’t let anyone stop you from standing in your truth. The world won’t shatter.