A Note from Malawi

Remember my post about those two Malawians who received cochlear implants?

Well, Helen Brough, a clinical scientist in Audiology from Cambridge, England, who is currently volunteering in Malawi, found my blog post and wrote me a wonderful note in response to it. It’s a perfect validation that my husband and I made the right choice to go with Med el for our family. Here is her message:

“I just read your post about the 2 children who received cochlear implants last year in Malawi.  I am currently volunteering at the African Bible College Hearing Clinic and Training Centre (ABC HCTC) in Lilongwe, where the CI switch-ons were carried out, and follow up is being done.

I was here for 3 months last year, and was present at the appointment where Richard’s implant was switched on.  Now I’m back for a further 3 months.

Firstly, thank you for raising awareness of the exciting development that 2 children now have cochlear implants in Malawi, and also thank you for raising some very valid concerns.

Internet access isn’t great here, and I can’t access the Med-El article properly, however I think I’ve seen the picture you are referring to.  You are absolutely right that the children were swathed in bandages initially, and thanks to visa problems for the tech support staff coming in from South Africa, the duration between operation and switch-on dates was closer to 3 months (I’m sure this won’t surprise you as you know Malawi!).  I think the comment about the “all smiles” must have been journalistic licence.  Peter also told me that the children were very excited because they knew that there was the chance that they would be able to hear again.

I too was concerned about follow up support, and also realistic expectations.  The staff at ABC HCTC are doing a fantastic job at providing regular follow up, wonderfully supported by the Med-El team.  Richard is from Lilongwe, and Joyce is from Mangochi.  Like you, I was concerned that there was no speech and language therapist available to offer follow up, however I am amazed and incredibly happy to see the progress they are making.  Both children were selected by the audiologists here as having a good prospect of success – they sought candidates who had not been deaf for very long, had good speech prior to the illness that caused their deafness (malaria), and have supportive and motivated families.  Both Joyce and Richard are now in school and doing very well.

There have been problems – dust and humidity being of significant concern.  Med-El rather optimistically sent electric dehumidifying kits for the devices, although neither of them have electricity.  We found a jar of rice works, more or less.  Any tiny crevice gets clogged with dust very quickly, so they switched to Rondo devices, which have fewer pieces to go wrong.  Batteries are provided free of charge on a regular basis.

The clinic has to pay for and organize transport to get the children to clinic appointments.  For Joyce and her mum, they also have to provide accommodation and food.  The staff at the clinic go far beyond anything you would ever expect of a clinic in the UK, and I have the highest respect for them.

The outcome has been so successful that the implant team are set to carry out 2 further operations in February next year.  Again there are no guarantees about successful outcomes, but the audiologists are experienced and have sought hard to find children who are likely to do well.

A quick overview of a challenging situation:

  • There are currently only 3 permanent audiologists in Malawi, all from overseas
  • Rebecca and Peter Bartlett, Audiologists from Australia, designed and built the ABC HCTC and have worked here for over 5 years, providing the first (and currently only) purpose-built audiology facility in the country.
  • The Bartletts trained 6 Malawian Assistant Audiologists, 3 of whom are now in the UK taking their MSc Audiology.  Two will return to ABC, the other will go to Blantyre.
  • Another 6 ABC students are currently in training, and it is hoped they will graduate with a BSc Audiology
  • ABC HCTC staff, and also Courtney Caron (the 3rd audiologist) from Queen Elizabeth Hospital in Blantyre, carry out regular village outreaches providing primary ear care and audiology support for the entire country.

I’m very impressed with the ethics of Med-El from what I’ve seen.  The whole situation is a massive international collaboration, with the surgeon coming in from the UK, an equipment specialist from Germany, the implants and technical support being supplied from Med-El and of course the ongoing work of the HCTC here, all provided free of charge.”

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My Daughter’s Post about the Hiroshima Bomb

Singer Nana Kono welcoming Amy to the stage (Photo by Shiori Usui)

Singer Nana Kono welcoming Amy to the stage (Photo by Shiori Usui)

My 12 year old daughter never ceases to amaze me. She wrote an article about the bombing of Hiroshima– today is the 70th anniversary. We just came back from visiting that marvelous country and she participated in a goodwill piano concert.

Check it out here!

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My Good Deed for the Day

Today our family walked down to a neighborhood parade and on our way back home, ran into an elderly couple who could not remember where they parked their car. We stood with them on the sidewalk, trying to help them picture where they had left it. They didn’t seem to be terribly worried (the woman had this amazing grin on her face the whole time) and the man made a  few jokes here and there. They had thick accents and I wondered if they were Norwegians participating in the parade, which happened to be Syttende Mai, the 17th of May celebration of the Norway Constitution Day.

So we walked with them not even a block, when the man pointed excitedly to a parking lot and said, “That’s it!” And we ambled on over there and sure enough, their car was right there. We gave them directions to the freeway (clearly they do not have GPS on them) and we parted ways with big hugs and smiles from the woman and hearty handshakes from the man.

This event gave us warm fuzzies as we walked back to our house. We were glad to have been able to touch these people’s lives with kindness. It was a little bittersweet for me, because it reminded me of my own parents and where they are in their lives, attempting to maintain their independence and not having the easiest time getting around. I wish and hope they will be kind to the strangers they meet (my mother’s anxiety often gets in the way) if they ever need help as they navigate their new-ish environment.

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April 6, 2015: Day 365/365 of Exercise

The words stayed there on the screen mocking me.

Day 365/365 of exercise.

I could not stop staring at them. I sort of wanted to slap my face for getting so hooked by this seemingly simple Facebook status update. My first thought: How is it possible to exercise EVERY DAY FOR A YEAR??

A classmate from middle school had written it. I emailed her immediately asking a barrage of questions: what does this mean…how did you do this…did you really exercise every day for a year?

And she wrote back and told me she got up very early in the mornings and went to the gym. Plus her kids were older teens so she was able to pull it off.

So then I thought: well, going to the gym at 5 am is not gonna work for me. I have an elementary-school age kid and a kid about to enter middle school in the fall- there will be lots of schlepping them around to school and activities and I’m not quite ready to leave them home alone.

But as I thought about that status update, something shifted inside me. Suddenly my state of inertia completely morphed into a state of extreme motivation. I realized I wanted, no, needed, this challenge really badly.

I had been bummed about feeling out of shape and not making the time to exercise regularly- that’s always been sort of a mantra for me, to be in shape and STAY in shape. I always felt better and stronger when I was active. And I felt like such a slug a year ago.

And here was a way for me to take charge and be motivated and stay motivated.

I started telling people about my goal to exercise every day for the next 365 days as a way to make it more real. I’m not a person who likes to fail, so saying the words out loud made me feel more accountable to my success.

Most people were thrilled and intrigued. One person said: you shouldn’t set unreasonable goals. It made me wonder why people say such things, and for a moment I dwelled on: why wasn’t it possible for this person to be supportive and say: wow, I hope you can do it! That would be hard for me! which is probably what they were really thinking and feeling at the time.

I didn’t dwell on that naysayer though. Luckily, I had a neighbor who exercised regularly and we started going for walks once a week in the morning before work, then when the weather turned nasty, as it ultimately does in Seattle, we started swimming also early in the morning. I was getting up at 6 am, which was certainly better than 5 am! In recent months right as daylight savings time was just about to kick in, we would look at each other and go: are we crazy? But it felt SO good afterwards.

My parameters for exercise: I had to move my body in some way for at least 20-30 minutes straight each day. My goal was not to do intense cardiovascular workouts every day for a year, but rather, get my muscles active and spend more time outside increasing my Vitamin D levels. And here were my main activities:

biking (usually twice a week), swimming (twice a week), hiking, walking (2-3 times a week), yoga (once a week), stair master at the gym (once a week), and playing frisbee or basketball. Skiing was out this season because the snow was nonexistent. Every week was different, depending on the weather and whether I was driving carpool or working at this job or that job.

In December I was sick for a week with a horrible sinus infection that had me completely drained of energy. But I made myself exercise- and it was very gentle and mostly consisted of me going for 20 minute walks around the neighborhood or doing yoga at home.

A friend commented that I seemed more peppy and cheerful than usual especially during the winter. And it is true, I have experienced many positive benefits of exercising every day: less moodiness and sadness, better sleep, feeling stronger and more toned, and it has now become a daily habit. I feel restless and stiff if I don’t make the time to move around.

I copied this status update on Facebook and hope it inspires someone else. I am undecided if I will continue the daily exercise regimen. Maybe it will be more like 5 days a week.

Next goal: I want to meditate every day for a year.  I will let you know when I start that :).

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The Danger of a Single Story

In honor of International Women’s Day, I am reposting some reflections about Chimamanda Adichie’s Ted talk, “Danger of a Single Story.”

The Inspired Philanthropist

Check out this interesting TED talk by Chimamanda Adichie. Her message is so right on: Our perceptions of others usually arise from a “single story”.

I am keenly aware that the single story can limit needlessly people’s understanding of a person or thing.

I have a hearing loss so profound that it takes the roar of a jet engine to bring any meaningful semblance of sound to my brain (when I am not wearing my cochlear implant, of course). And even then, I may not hear anything.

The way people perceive me often comes from several different single stories (and that would take several blog posts to talk about them all!):

  • All deaf people know sign language.
  • I must be “Deaf”. The capitalization of the word indicates that people think I am part of a culture that uses American Sign Language (ASL).
  • It is important to talk louder or over-articulate…

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Geeks make the best Neighbors

Well, Geekwire beat me to it. I wanted to write a post about my cool neighbor, Lesley Baker, but they got to her first.

lesleyLesley is a smart gal, a great mom, sweet neighbor, and all-around nice person. We first got to know one another when my daughter started being a mother’s helper to her last year. My daughter would amble on down to Lesley’s house for about an hour and receive a decent salary for her first job. Then when the hour was up and it was time to come home, Lesley would always text me to let me know my girl was on her way home.

Lesley has been one of the biggest supporters of my “Exercise Every Day For a Year” challenge. Since I started my daily exercise routine last April, we have been exercising together once a week. Lesley is a runner, so we started running in the mornings once a week. That ended pretty quickly when I remembered how much I disliked running, so we switched to walking. When it started to get darker in the winter, we switched to swimming at the community center pool.

I’d drive about 100 yards to her house and we’d chat for the 2 minutes it took for us to get to the pool (I know, I know, we could walk but I’m trying to save some time here). We’d go for our 20-minute swim**, then we’d soak in the hot tub and chat up a blue streak for about 5 more minutes. I would wash up and get dressed for work and she’d dash home to be with her kids so her husband could leave for work.

During those brief 7-10 minutes we spend together talking, I learn a lot about her: the apps she’s working on, what she hopes to do career-wise, how much she loves her kids, and how exhausting it can be caring for them when they’re sick or up at night. We talk about the intersections of career and motherhood and our struggles to find flexible work schedules that allow us to be there for our families and at the same time give us the freedom to pursue our passions.

I checked out her app, Achy Penguin, which is designed for kids 5 and under who experience frequent pain. I found it to be rather ingenious! You can blow your hurt out, listen to a fun story, get distracted by a skateboarding music video, do some relaxation and deep breathing, and download a picture of yourself so you can “freeze” the body part that hurts. And she’s got another app that helps kids deal with anger called Huffy Dragon, which she says has gotten 2500 downloads compared to 700 for Achy Penguin.

I am really inspired by her “can-do” attitude, especially what she said about learning to program:  “Anyone can learn to program at any point in their life. It’s hard work, but it’s incredibly rewarding. Programming is one of those things that the more you learn, the more you realize you don’t know – but you just have to keep going.” It’s so true!  Lately I have been learning about website platforms and HTML coding. It is a slow process and you need to do the same thing over and over to develop some sort of “muscle memory” as a co-worker calls it, before you really GET it. I mean, five years ago I would NEVER have imagined myself creating HTML code.

Thanks to Geekwire’s article, I know a lot more about Lesley and am excited to have my next chat with her soon!



**My parameter for exercise is that it must be for at least 20-30 minutes moving my body in some way: walking, swimming, biking, yoga,  hiking, etc. But more on that later- my challenge is almost over and I will be sure to write a blog post about that.

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Cochlear Implants come to Malawi!

Medical Electronics (Med-El), the cochlear implant company, posted this article on Facebook about 2 children in Malawi who received implants! This has significance for me for two reasons:

There are a few problems I have with the article:

– There is a picture of one of the recipients wearing his implant and the caption reads that he is “all smiles after the operation”. This is not possible because after the operation, your head is all swaddled like a mummy. And you don’t get “turned on” or rather, “activated”, until several weeks later.

Parts of a cochlear implant from the Med-El website. From left to right- the processor with magnet and the internal device

Components of a cochlear implant from the Med-El website. On the left is the processor that sits behind the ear. In the middle is the coil with a magnet inside it that rests on the head. On the right is the internal device (which also has a magnet in it to which the coil attaches to) which is surgically inserted underneath the scalp near the ear and is connected to an electrode array that is threaded through the cochlea.

– I am concerned about whether or not the children will receive the necessary, consistent follow-up to help with speech and listening. It looks like both children live in a major city and can, hopefully, easily get to the clinic to receive services and equipment if needed. Because the children got implanted so late in their lives (at 16 and 9), it is not clear to me how successful they will be with the implant- it all depends on when they lost their hearing. If it was at birth, it will be very difficult for them to catch up, but because they are still young, there is hope. If they became deaf AFTER they acquired speech and language, then there is great potential for them to re-learn how to hear. The younger kids are implanted, the better the chance for success at speech and listening.

– This article and other videos showing people getting their implants turned on seem to convey that the implant is a “cure-all” and once it is turned on, the person can suddenly hear. This is NOT the case. The person may hear a semblance of sound but they will almost never have an idea what kind of sound it is.

I’m excited though, that this technology has found its way to Malawi, the warm heart of Africa!

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