Saleem Hue Penny
Tinniō
my name is Saleem Hue Penny, thanks in advance for sharing this time together. i use pronouns he/him/friend and i’ve always been aware of—though not always appreciated nor understood—my range of identities. Black, Southern, son of a single mother, dad of twins, child of the 80’s, cratedigger, artist, differently-abled person in an ableist society...and on & on & on. Some of these identities are visible, some are aural, some are context-dependent, others are 24/7 consistent. i’m proud of many of them, some are steeped in shame, and some i’d swap in a second if a magic wand waved my way.
i think it’s important to ground any conversation of identity in curiosity and humility. those traits ground me and have been particularly crucial as my personhood has become significantly more multifaceted since being diagnosed with Ramsay Hunt Syndrome in September 2019. in the United States, 5 out of every 100,000 people develop Ramsay Hunt syndrome each year. i definitely haven’t had the bandwidth, and also feel like my medical conditions are still evolving, but at some point, i plan to create a longform piece about this experience. the working title “Not That Special” (as in, sure, i want to be special, but not that special), captures the surrealness, randomness, loss, and unpredictability that life with Ramsay Hunt causes my spouse, kiddos, kith, kin, and community.
varicella-zoster virus (VZV), which is the same virus that causes chickenpox and shingles is at the heart of Ramsay Hunt. basically VZV can remain dormant for decades in someone who had chickenpox as a child. if VZV gets reactivated in adulthood, it results in shingles and, in some cases, develops into Ramsay Hunt syndrome. (i’d take chickenpox, which i remember as a couple days of missed school, reading the same thundercats comic book from the mini mart, wrapped up in blankets on the couch—over shingles, any day). it’s unclear why VZV reactivates as well as which neural pathways, in addition to facial nerves, will be affected. the National Organization for Rare Disorders is on point with: "The diagnosis of Ramsay Hunt syndrome can be difficult because the specific symptoms of the disorder do not always develop at the same time."
play-by-play version:
(Prelude): VZV is sitting around, bored → yeah, why not shake it up with shingles in that right-side inner ear → VZV screams YOLO! drops it in 5th gear, then goes all fast and furious through your cranial nerves →
(Day 1) you lose sense of taste at breakfast → in 12 hours, a raging headache →
(Day 2) a full day of vertigo →
(Day 3) an urgent care visit for nausea, becomes full-blown ER admission, within 12 hours, fever, onset of facial paralysis, vestibular dysfunction (inability to sit/stand/turn), blurring/narrowing of field of vision →
(Day 4) tests →
(Day 5) tests → then a happenstance physical therapist exam reveals lesions on roof of mouth →
(Day 6 to Day 12) you stay patient as intravenous antiviral drugs knock the living %@^# out of VZV →
(Day 13 to Day 55) you get world-class inpatient treatment at Shirley Ryan AbilityLab in:
- speech therapy (stimulating paralyzed facial muscles),
- vestibular therapy (re-learn to walk),
- occupational therapy (learn modified activities of daily living),
- physical therapy (hand/eye coordination to text),
- psychological therapy (because only the unknown is known),
- and a visit from the chaplain who happens to be an aromatherapy master →
(Day 56 to Day 85) back home, go to daily intensive outpatient day program →
(Day 86) awake with sudden, total right-sided hearing loss →
(Day 87...) adjust the plans → outpatient treatment → clinics close → adjust the plans → telehealth treatment → hearing aids → adjust the plans → cochlear implant →
(Day 657 (Yesterday)) keep doing →
(Day 658 (Today)) the best →
(Day 659 (Tomorrow)) you can →
(Day 661 (Birthday 6/26)) thankfully
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ANC: Would you have considered yourself healthy before the onset of Ramsay Hunt syndrome?
There’s that artificial split in healthcare and wellness in terms of things above and below the shoulders as far as what gets covered. I think about having mental health issues long before this issue with Ramsay Hunt. Thankfully, I’ve had very few periods of uninterrupted healthcare and had access to medications and the support system of a psychotherapist. It’s sad, but there are so many job opportunities that I could never even think about because of not having health insurance. That’s the difference between being stable or being in a situation where you’re not, you know?
I feel like I’ve been pretty healthy physically, except for eight years ago out of nowhere when I just started getting these hives. Unfortunately, the allergist I worked with treated it primarily with steroids and taking them for so many years compromised my immune system to the point that any virus my kids got—if I get one of their colds, it’s a couple weeks. My doctors had me quarantining a solid four or five weeks before the mayor had people start the stay-at-home. That continues to be a very real thing that occupies a lot of my headspace. It’s a pandemic that people think just ended, but I can’t get vaccinated. Nothing’s changed for me, except that everybody else is out there doing whatever.
Especially as a kid, I was healthy. You know, no cavities. Now my body can't shake a cold. It’s super humbling.
So, the steroids and your compromised immune system factored into the Ramsay Hunt diagnosis?
Yeah, I mean...I really appreciate the current allergist I have. The first time we had an appointment, she was like, "I want to apologize on behalf of our profession. You should have never been started directly on prednisone. There were four other meds that could have and should have been tried." I have diabetes now, because steroids mess with your whole endocrine system. She was like, "We have to get you off prednisone. We can't take any risks of something else like this, something rare, creeping up. We literally cannot take the risk." She looks at it as a safety thing. My kids, wife...there are other people in my life. It's not just me struggling through, and it's affected all of them. It affects everybody. The kids have been through so much these past two years.
How much have they influenced your recovery? There's a need to stay positive—
—but sometimes you just don't have it. My treatment goal was to be home for their birthday, and I was discharged from the hospital two days before. I wanted to come home not in a wheelchair because when they came to visit me, I was still having to use a wheelchair. I came to the birthday party and I was unsteady. I couldn't get up. I was like, "I'm gonna post up, sit right here in the corner," but that was a huge motivator just to get home in time for their birthday. Another was walking them to school. When I was able to walk them by myself, I was bawling. My daughter was announcing to people, "My papa's walking me to school! He's been in the hospital. He was really sick!" It was just a testament to how much they care about me and that, at the end of the day, I'm still their dad. Weird, quirky medical stuff, and has to miss parties, and can't be in loud rooms, and so many things they wish he could do. But they know I wish I could do it too. It's like, "just do your best to help papa, and I'm gonna do my best to be there for you."
We've been lucky to have a support system. Our son definitely started dealing with some separation and we were able to get him therapy. He was really terrified I was going to leave or wouldn't come back. But I get it. I was dizzy and then just left. I did thankfully get to see them a few times, but I didn't want them to have too many memories of me there. It can also be really hard to control the right side of my face, and the kids just roll with it but my son started modifying his smile. In the beginning, that side was totally paralyzed and he started smiling like me. He used to have a symmetrical smile, but now it's like a smirk. I never would have imagined that.
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tinnio (stylized as tinniō) is a Latin verb, that embodies several sounds in my experience of tinnitus:
- I ring, jingle, clink.
- (figuratively) I pay (with the clinking of coins).
- I cry, scream in a shrill voice.
i sought to use those words, experienced as nouns and verbs, as the shell for a sound-based poem. i was taking a workshop on voice and form taught by sam sax and one week he challenged us to: "make a poem that's impossible to be written down, that prioritizes the particularities of the voice, the potential and the limitations of what the page can hold. (then of course, try to write it down)."
I ring,
like / / y’all
hear that / / right?
like / / y’all
hear that / / right?
I2,
I2 jingle.
I2,
I2 clink.
It’s like / / I
think? I pay,
t(o)o / / it seems,
think? I pay,
t(o)o / / it seems,
I cry,
my ears ⇾ r ⇽ eyes,
I scream, in a / / voice,
I plead,
my ears ⇾ r ⇽ eyes,
I scream, in a / / voice,
I plead,
To be, / / silently,
see the quieting,
be riling me,
see the quieting,
be riling me,
Sighing or flying.
Gliding or diving.
Whispering, violently,
Drifting, whiling...ly.
Gliding or diving.
Whispering, violently,
Drifting, whiling...ly.
I end before the end
begins & that
frēquish / / begins again,
begins & that
frēquish / / begins again,
This / /
should be peace.
Yet, eye hear
/ / beeps.
should be peace.
Yet, eye hear
/ / beeps.
i had wanted to describe tinnitus for several months, as it was becoming increasingly debilitating since losing my right-sided hearing in November 2019. Mayo Clinic sums it up nicely: "Tinnitus is when you experience ringing or other noises in one or both of your ears. The noise you hear when you have tinnitus isn't caused by an external sound, and other people usually can't hear it. Tinnitus is usually caused by an underlying condition, such as age-related hearing loss, an ear injury or a problem with the circulatory system."
at its peak i was hearing 4 different tones layered unevenly. it would begin increasing in volume around 6pm and swell towards 8pm. in the worst instances, it would wake me up like clockwork between 2am-4am. so i thought "tinniō" was the perfect opportunity to start unpacking this experience, especially since my words kept failing, and all i could do was ask people to watch youtube simulations.
my goal was to make a sound piece to help/force hearing folks to engage/understand my particular constellation of hearing (the triumvirate of: single-sided deafness, tinnitus, and hyperacusis). i was meticulous about the sound samples i collected. once the 29 sounds were fully assembled, i played the track on a loop and spoke possibilities that the listener could insert in the erased/omitted portions of the written text. it was important to cite the Creative Commons samples, mostly because it’s good practice, but also i wanted other deaf folks to be able to experience the piece even if they couldn’t "hear" it in a traditional/ableist manner. for example, you can literally drop the titles of the sound samples into the (omitted/erased text) "blanks" and have an engaging experience.
it was really hard to record "tinniō" because the sounds triggered my tinnitus. i pushed it hard one day and had a "vestibular hangover" for almost 24 hours where my balance and vision were pushed beyond a healthy limit. after that, i realized i had to spread the recording out over the next 2-3 days, taking 60-90 minute breaks after each 30-minute recording spurt. it was crucial to let my system recover. i don’t subscribe to method acting or the trope that suffering artists make the most authentic art. shout out to W. Ellington Felton's foresight in placing the exclamation mark after "art" in the "Art!Hurts" brand. that decision and distinction is crucial. this piece required struggle, but it did not necessitate suffering.
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How were you attempting to convey your personal hearing experience in the production of the audio?
I was hearing sounds like the airplane chime that I've got in the song, and a low whirring that was like cars—like people doing that loop on Lake Shore Drive. I would also hear a ham radio beeping or Morse code with no rhythm, and a whooshing; that's actually one of the most common sounds for people with tinnitus. I missed the quiet, because there were all these sounds playing in my head. There are certain sounds and frequencies that are challenging to hear, like the cinder block or the beeping that are hard with my cochlear implant. The range I can hear is limited. The band of sound would be pretty limited if I had truly only been recording with the implant. I had to let go of how pure the song was going to be as a representation of what I can hear.
I didn't want to get hung up on the details and miss the bigger picture, which is inviting the listener in to hear this experience. There were some sounds that nailed it and felt so incredible to find the actual type of sound I wanted. Then the call-to-prayer at a mosque was an idea of people coming together because they're hearing a sound. It's a deeper connection of feeling grounded, even if people don't understand the words just like I don't understand a lot of sounds. I wanted to convey the struggle but not hopelessness, so that prayer was really important for me to have—at the mosque and the four-part harmony of "Oh Come, Emmanuel" in Latin.
Because I can only hear out of one ear, I wasn't confident doing anything with panning. That was eye-opening. Sometimes in the past, I would just go unnecessarily wild with panning. That was my go-to, like my happy place. I knew exactly where everything was in the mix. I can't do that anymore. I was trying to be conscious of that, like I don't want to alienate another person who might be in my situation with a limited range of hearing from right to left. At first, I thought, "What if I try to give the listener a simulation truly of what I hear...then I would pan this whole song to the left." That would actually be pretty triggering if someone made something so intense on one side. I want people to become curious and not alienated. I don't want them to feel pity like, "Oh man, that's how this would sound for him." So I just mixed everything head-on. Another challenge was hearing my own voice. I sometimes can't tell exactly where different pitches of my voice are.
Have you encountered any writers or people working with sound in a similar way to what you're doing now?
A poet that I really respect, and he's been like a constant support when I need it, is Raymond Antrobus. He's a deaf poet I met at a Cave Canem retreat in 2019. That was June, and it's so ironic how you can have your highest moment and lowest moment in the same year—like two months away. I was so fortunate to go; it was my first time ever being in a space with all Black poets. You have the courage and responsibility to write the poems you know you'll be judged and supported for in the right ways.
He probably doesn't even know this, because it's not like I call him up, like, "Hey, how do you deal with...?" But he has this video poem called "Dear Hearing World," and it's him telling basically what it's like. He wasn't diagnosed as being deaf until he was seven. His parents just didn't want to accept it. Can you imagine? He just published his first children's book back at Christmas, and my kids love it. It's about a bear who gets hearing aids—his story as a bear. The book really gets at how disorienting hearing loss can be on a child-friendly level, but his performance poetry was the first time where I felt, "He wrote this to a hearing person, not like 'to my fellow deaf people...' but 'hearing world, you need to listen...'" He's signing a lot of the poem, but it's clear it's not for somebody who needs it signed. He's making a point to the hearing person, like this is our experience, and I think I drew from the spirit of wanting to communicate my experience to someone who doesn't have it—not in a way that's patronizing, not in a way that's condescending, and not in a way that's glorifying it.
I haven't seen a bunch of sound work, but I'm sure there's stuff out there. It's honestly not been a world I've been too plugged into but I felt like for this one, it had to be a sound piece because I've tried so many times to write about tinnitus with words. It never occurred to me to make a sound piece until sam sax gave us that assignment. It's so obvious to say it out loud, like using sound to describe sound, but I also wanted it to be something that lives on the page and has a visual component. You know, the header and footer are from one of my first hearing scans. I just wanted people to have a visual experience because a lot of those sounds I can easily picture what they look like because I can picture what they're coming from. I wanted people to have the experience of reading the samples, and seeing what it could be like to drop the samples into the empty spaces of the text was important.
How do feel about the irony of sound having gone from something already important for you to what it means now?
I mean you said it: the irony. There's a lot of irony about the sounds you get to pick or the sounds you assume you have some sort of cultural ownership over, and those being the sounds I don't have access to. It's just not enjoyable to listen to hip hop and jazz, and those are the two I go to the most. I was working on a little ditty and I knew what sounds I wanted to put in, but it's more like muscle memory. Then when I actually put them in, it probably didn't sound the way I thought it was sounding. It's like if I was an athlete and had my vestibular disorder. There will always be ways of movement for which I'll have a certain level of caution, a self-awareness of moving through space and I'll probably have a self-awareness around sound. Hopefully not as much around music as time goes. That's the hope, or at least a hope. A more important and practical hope is feeling safe when I'm crossing the street with my kids.
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"Tinniō" is comprised of the following 29 audio samples (in alphabetical order):
"Airplane cabin bing-bong/Interphone chime from an Airbus A320"
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Airplane PA Sound 2" by festivus31
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Amateur radio international test sentence" by cydon
Licensed Under CCO Attribution-NonCommercial 3.0 Unported (CC BY-NC 3.0)
Licensed Under CCO Attribution-NonCommercial 3.0 Unported (CC BY-NC 3.0)
"Bakken Roller Coaster at Klampenborg, Denmark" by JorgenJak
Licensed Under CCO Attribution-NonCommercial 3.0 Unported (CC BY-NC 3.0)
Licensed Under CCO Attribution-NonCommercial 3.0 Unported (CC BY-NC 3.0)
"Bazaar in Fez, Morocco" by susipekka
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Chanting prayers at a Mosque near Gondar Ethiopia" by ikbenraar
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Clapping, trumpet playing a fanfare, whistles and bells ringing at political rally" by sagetyrtle
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Classic vinyl record scratches" by filmsndfx
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Cloth flapping on a clothesline gently" by leonelmail
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Crowd speaking Mandarin in Beijing's Jingshan Park" by Lenguaverde
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Digital glitch created with randomness device" by Diicorp95
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Driller going through concrete" by 1pjladd2
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Evil dentist droning grinding noise" by dethrok
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Forest at night in Mexico's Sian Ka'an Biosphere Reserve" by felix.blume
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Formula One race cars in turn 11 at the 2012 Australian Grand Prix" by Ears68
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Heartbeat fast" by Poyekhali
Licensed Under CCO Attribution-NonCommercial 3.0 Unported (CC BY-NC 3.0)
Licensed Under CCO Attribution-NonCommercial 3.0 Unported (CC BY-NC 3.0)
"Honda CRV on gravel driveway" by seth-m
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Kindergarten playground Omsk, Russia" by Zabuhailo
Licensed Under CCO Attribution-NonCommercial 3.0 Unported (CC BY-NC 3.0)
Licensed Under CCO Attribution-NonCommercial 3.0 Unported (CC BY-NC 3.0)
"Loud chorus of cicadas in Maranola, Italy" by dethrok
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Morgan-McClure NASCAR pit crew in practice" by Bobby Beck
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Morning in city center, Aarhus, Denmark" by inchadney
Licensed Under CCO Attribution-NonCommercial 3.0 Unported (CC BY-NC 3.0)
Licensed Under CCO Attribution-NonCommercial 3.0 Unported (CC BY-NC 3.0)
"New York MTA's R160's last stop announcement" by jerk01
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"One Man Choir (Demo)" by SoundTrap®️
Licensed Under CCO Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)
Contains lyrics of “Veni, Veni Emmanuel” (traditional)
Possibly sourced from 2014 The Gesualdo Six & Owain Park performance
Licensed Under CCO Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)
Contains lyrics of “Veni, Veni Emmanuel” (traditional)
Possibly sourced from 2014 The Gesualdo Six & Owain Park performance
"Paper Crumpling" by junkfood2121
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Radioteletype data transmission recorded from 14664.8 kHz" by GameramPC
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Revolutionary War reenactment players' marching band" by alienistcog
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Starting a chainsaw and cutting a big tree" by fkurz
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
"Start-up and idle of a Belgian F16 fighter jet" by ikbenraar
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
Licensed Under CCO 1.0 Universal Public Domain Dedication (CCO 1.0)
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