WORLD-SHARING 2.02.4 – Marilyn Armstrong

Share Your World – July 9, 2018


What would you name the autobiography of your life?

Serendipity.


Which do you prefer sweet, salty or buttery?

All of the above, in varying combinations. I do not, however, like “sweet-salty” combinations such as chocolate covered salty pretzels. I do like sweet-bitter combinations like bitter orange, lemon … to a point. I’m not an extremist. I don’t like intensely bitter orange or super-soured lemon. I sort of appreciate subtlety in foods.

As for buttery? Not so much these days. When I was younger and didn’t mind fatty foods, I was more butter-inclined. Fonder of “slathered in butter.” Not much these days. I’m more temperate. I like a little bit of this, that, and the other thing. Too much of any single thing is … well … too much of a good thing.


What’s the finest education?

For what? Law? Medicine? Software Engineering? Physics? High Mathematics? History? Economics?

Even amongst the top schools for each subject, you could argue which was which THE school. Do you like MIT or Cal Tech? Harvard or Yale? Cambridge or the Sorbonne? Julliard? Oberlin?

Photo: B. Kraft

I think the best education for me or you would be the best we could get out of what happens to be available. I’ve met some really ignorant PhDers and some incredibly smart people without any formal education.

Still, that being said, a really excellent education at a top school for whatever you are studying can’t possibly hurt, right? So if you can get into the right school, definitely go. And I don’t mean online. I mean GO. Because there’s more to college than classes.


What made you smile this past week?

When we got home from the hospital — it was a long day — I found a package. It was the fancy Red Sox 2018 shirt I ordered for Garry. A bit more than I would normally spend on a shirt, but I thought he needed something to perk up his world. He has been so worried about this surgery, he needed an “upper” and I thought this would be it.

You think? It certainly made Garry smile  😎

TO HEAR: THE OBJECT OF THE EXERCISE – Marilyn Armstrong

THE OBJECT OF THE EXERCISE: TO HEAR

Yesterday, I got a call from the Audiology Department of UMass. She said she wanted to give me the rest of Garry’s official audiological follow-up appointments — as opposed to the surgical follow-ups. I had already gotten the ones for pre-op and Surgery, plus surgical follow-up. Lucky for both of us, she didn’t expect to talk to Garry personally. This is the only medical place that realized he can’t talk on the phone.

As a deaf person, he can’t chat on the phone. That’s what the surgery is all about. Every other time I talk to a medical person other than our family guy, they insist on talking to Garry. I hand him the phone, shout “JUST SAY YES!” Which he does and the conversation can progress. They totally fail to have a grip on the “he can’t hear” issue. Either that or they think if they yell louder into the mouthpiece, that will fix it.

No more of these!

The cochlear implant is a surgical miracle and a lot of technological fine-tuning. Post surgery, he has a date for “turning on the equipment,” three more tune-ups, with a final official get-together after six months. If he needs more help or another type of help, like speech therapy, we can add those.

It’s just as well we aren’t trying to do this in Boston. We’d never survive the traffic.

The object of all of this? To bring Garry back into the world. To make him part of the conversation. To have him in it and not have to round it up and tell him about it later. To take him out of the enclosed space in which he now lives and bring him into the bigger world — the way he was. The way I remember him.

All those objects they will put in his ear and on them? These will change him. I have a feeling they will change him more than he expects. Maybe even more than I expect.

Tune in! We’ll be playing this one by ear.

KUDOS (#FOWC) WITH INDULGENCE (#RDP)

FOWC with Fandango — Kudos
RDP #27 – INDULGENCE

I got a note today telling me that our appointment with the pre-op people on July 9 didn’t appear to exist. UMass has communication problems. No one seems to talk to anyone else around there.

For an entire year, I tried to get an appointment with a medical oncologist for a checkup on my (at that point) relatively recent bout with two different forms of cancer. It never happened.

Every time I got close to the appointment, the doctor’s office called to tell me he had a meeting and I had to reschedule. It happened six times, after which I changed medical plans and went back to a facility that always took care of me.

I never saw the neurologist either. When I got there, they told me I didn’t have an appointment. When I got home, they called me to ask me how come I missed my appointment.

I managed to survive those two experiences, but this is a pre-op for Garry’s cochlear implant. I have no more patience to deal with this nonsense. I don’t know what their issue is, but they need to fix it.

I called everyone and got disconnected. Finally, I called the hospital’s general directory and got someone who connected me to the actual doctor’s office and she said she was sure we had an appointment and connected me with the secretary in the office and she said she was also sure we had an appointment. Which means that there’s nothing more I can do.

Entry

I have no doubt about the skill of the surgeons or the medical abilities of the team, but I am deeply dubious about the hospital’s ability to manage simple communications with each other.

So kudos to me for spending my entire morning calling a hospital, getting disconnected, and continuing to try until I finally got answers which I hope turn out to be the RIGHT answers.

Grant me a small indulgence as I struggle to get what’s left of my temper back under control because this drives me nuts. I figure when you make an appointment and you show up for that appointment, the next thing to follow will be seeing the doctor (or whoever you are supposed to be seeing). Eventually, someone will tell you what — if anything — they have found.

This has not been the case with UMass Memorial and I don’t understand it. I’m still breathing heavily.

Up in the air, Junior Birdmen. Up in the air, upside-down.

TODAY, INCOMING TV CAMERAS – Marilyn Armstrong

Ragtag Prompt # 25 – Precedent

Garry’s getting a cochlear implant. Because this is a life-changing and unprecedented event for him, he volunteered to help UMass with their cochlear implant fundraising endeavors. Although Garry has been retired for a long time, a surprisingly large number of people recognize him and he is a very good speaker. On camera and live.

The cochlear implant groups want to make this technology more widely available and try to help people who need help for hearing problems. The doctor was particularly miffed that Medicare tells people to get hearing tests, but won’t help pay for hearing aids. It’s one of Medicare’s cruel jokes — along with no help for getting your teeth repaired or get eyeglasses or dentures.

That has always baffled me, too. Most of us can scrounge together a hundred bucks for a pair of glasses. On the other hand, $5 to $10,000 for hearing aids is not something most older — or for that matter, younger — people can afford.

So what’s the point of the hearing test? If you know you can’t hear, why bother to make it official when you can’t do anything about it?

That’s hopefully what raising funds will allow. Tomorrow the camera and crew will be here for an interview with Garry, who is totally (obviously) fine with being TV cameras. I get interviewed too because the effect of deafness on a partner is an important part of the project. Except I really am very uncomfortable when cameras roll. Oh well. Anything for a good cause. I think we need a good case with which to be involved. We need to do something good.

I think most people are unaware of how much and how profoundly deafness affects individuals and their relationships. It will be an interesting project.

Because of all this, we had to clean the house. If we are lucky, the weather will be fine and we can shoot outside. Maybe on the deck. Meanwhile, Owen cut the lawn. Garry cleaned the deck. We both cleaned the house. But if we have to shoot in the house, the hysterically barking dogs are likely to make the project kind of difficult.

It’s really Gibbs who is the hysterical barker. If anyone who isn’t Garry or me is in the house, he barks continuously. Endlessly. And very loudly. He looks like a small dog, but he sounds like Great Dane.

I sure do hope we get good weather! I’ve got terrible stage fright about TV cameras and a frenzied, barking dog in the background is not going to help.

WHAT’S STUCK IN MY EAR? – Marilyn Armstrong

“It’s a bit stuffy in here,” I said. “Maybe I should turn on the air conditioner?”

“What’s stuck in my ear?” Garry looked alarmed.

I collapsed and I just couldn’t stop laughing. I couldn’t even answer him. All I could do was howl. Tears were pouring down my cheeks. “I … ” and then I’d laugh some more. “I mean …” More hysterical laughter.

Eventually, I managed to tell him that the air conditioner was not stuck in his ear and what I’d said was “It’s a bit stuffy in here …”

And that is why he needs that cochlear implant.

The surgery is scheduled for July 20th with pre-op on July 9 and surgical followup August 6. With a lot of audiologist visits in between.

There was no air conditioner stuck in his ear. It’s too big.

DISAPPEARING FOR THE DAY – Marilyn Armstrong

Good choice of prompts for our day!

We’re off to see the wizard, in this case, the audiologist at UMass Memorial in Worcester. Hopefully, this will be the last step prior to setting an actual date for Garry’s cochlear implant surgery.

Home 

Off to see the wizard!

Let us hope this goes well!

Optimism reigns at Kachingerosa.

THE RIGHT PEDIGREE – Marilyn Armstrong

PEDIGREE – NOT JUST FOR DOGS!

When we talk about pedigree, it’s usually about dogs or horses … or even cows and goats. In this case, I want to spend time talking about doctors.

When it comes time to for surgery, you need the right doctor. Not just whatever or whoever happens to be the one your primary has in his circle, but one who has the kind of skills and background who will make you feel secure and safe — and most important, repaired.

The right medical insurance — a PPO which lets you go to any hospital and see any doctor.

When I went in with cancer in both breasts, I was already dubious about our local hospital in Milford. After a conversation with the surgeon, I knew that I would not use her under any circumstances. She told me that there was ONLY one way to deal with the surgery (wrong) and that it would be impossible to create implants. Wrong again.

With some help from a friend who was a doctor, I found the right hospital (Faulkner in Boston) and two doctors — the cancer specialist and a plastic surgeon — who told me full bilateral mastectomies were a better option than partials AND and they would give me implants so I would come out of surgery still looking like a woman. The two women worked together on me and when they were done, I had breasts.

Not “real ones.” No nipples. Lumpy, as post surgery implants tend to be, but I didn’t feel like an alien from another planet, either.

A few years later, it was my heart. My “local” cardio guy told me (on the phone — he never found the time to actually see me in person) — to not worry. When my heart began to fail, they’d deal with it. I didn’t like the doctor and how could he be diagnosing me when he never had time to see me? He sent me to his young practitioner who never really gave me the results of the tests (such as they were) and the doctor said he had no time to see me for at least six months.

Six months?

I went online and I found a brilliant heart surgeon at Beth Israel Deaconess in Boston. I went to him. He spent over an hour explaining options. That repair might be possible, but if it wasn’t, I had to be prepared for a full replacement. There were a lot more tests that needed to be run — none of which had been so much as suggested. We made a date.

The date got pushed back for months. Heart surgeons have a lot of emergencies. It comes with the territory … and then, I got pneumonia and had to wait until I could breathe again. It took probably 7 or 8 months to finally get me and the doctor in the same place (Beth Israel) at the same time. April 30, 2014.

I still had some serious tests to be done … almost a week of testing before surgery and when they did the surgery, it was much more complicated than it was supposed to be. It eventually involved two valves and a redesign of the left ventricle. Also an unexpected bypass including replacing of an artery (taken from my right leg). Finally, a permanent pacemaker since my heart has refused to restart without assistance.

If I had followed the instructions of the original heart surgeon, I would be long dead. Not merely was he wrong, but he was terribly, horribly wrong. I have had a hard time forgiving him for his callous disregard for me. He didn’t care and he made it obvious he didn’t care.

Mass Eye & Ear Hospital

Now, it’s Garry’s turn. He is up for a cochlear implant and the only hospital that does it in this area is UMass Memorial. Which, while I’m sure has perfectly fine surgeons, but it also has massive issues with communications and organization. Worse, it has a very limited facility for this work and limited ideas of how to do it.

Technology

Like many other surgeries, there are choices. One ear or both? Some do both, some only one and it depends on the patient. New techniques exist and these are only available at Mass Eye & Ear in Boston.

Cochlear Implant

Whether or not insurance will pay for new versions of the surgery is a different question, but at least there are choices. In the year since we started checking this out, Garry has spoken with the surgeons at UMass Memorial for a bare five minutes and he never got to ask a question.

We know nothing about them — not even their names. There are two of them, one as primary, the other his secondary. Garry is — understandably — nervous and worried about the process. Boston is a long drive from here. He will need to go for the surgery, then come and go from Uxbridge to Boston pretty regularly until they get the adjustments made and he can really hear as he should. Time is slipping away far too fast and we can’t keep just waiting.

The other day, Garry discovered he has a connection to Mass Eye and Ear and has been in touch with them. I think, despite the inconvenience, we will go with the place where they have the worldwide best reputation in the world for cochlear implants.

Although we are still in waiting mode, I hope we will have the chance for Garry to work with the doctors who have “best in show” pedigrees for his procedure. Because this is important and life changing.

Pedigree is important and not just for shaggy canine pals.

The right doctor is the difference between a successful procedure and something which never works quite right.