Sherry and Melissa wrap up the first season of Senseless with this episode talking about the book Being Seen by DeafBlind author Elsa Sjunneson. The hosts talk about the book’s examination of ableism in the media and in the author’s own life and how it applies to their personal experiences. 

This podcast is not psychotherapy and does not contain medical advice, but is simply a recording of two friends talking.

Links:

Email questions or feedback to Sherlynn53@cox.net

Sherry and Melissa are delighted to reconnect with their listeners after a long hiatus! This episode combines segments of two different attempts at recording. Sherry and Melissa’s first attempt contained a lot of laughter and upon listening to it, the hosts noticed that maybe they were laughing a bit too much through the hard stuff. The second recording is Sherry’s fullest truth-telling about what it is like for her to live with chronic illness, while Melissa listens. The final version you are listening to starts with a funny story by Melissa from the first recording and then, after our theme music, cuts to Sherry’s truth-telling.

This podcast is not psychotherapy and does not contain medical advice, but is simply a recording of two friends talking.

Episode Highlights:

• The difficulties of understanding people wearing masks as a Hard-of-Hearing person (including at the audiologist!)
• Feeling pressure to downplay sensory loss or chronic illness issues for the sake of others’ comfort
• Balancing gratitude and positivity with self-love and articulating needs
• The fear that being honest and open will cause people to abandon us versus learning to receive love and trust in others
• The everyday challenges associated with sensory loss or chronic illness and their impact on energy and emotions
• Love languages, listening, and what love looks like to us
• Poetry reading: “Sweet Darkness” by David Whyte
• Guided breathing exercise

Quotes:

“It’s hard to see ourselves or where we’re coming from. I’m always curious how other people perceive me.”

“It’s always the mindset of ‘don’t talk about that, nobody wants to hear about it.’ You know what I mean? Because people are gonna see it as complaining, or people are gonna see it as ‘we don’t want to talk about that, that’s not fun to talk about,’ or ‘that scares people.’”

“Sometimes, we have to be uncomfortable. Because if you’re never uncomfortable, you’re not really connecting with people.”

“I know that getting to where I am right now is learning that I had to turn my love to myself and love my own heart and love me and everything about me. And it’s doing me a disservice if I’m constantly trying to make it about everybody else but me.”

“There’s part of me that wants to tell others how unbelievably ill I am. I have no idea how to get people to understand that, I don’t think it’s possible. But what it’s like to live every single day, all day, every day, feeling so sick that most people, they maybe would go to the emergency room.”

“It’s about receiving love from other people. That’s the challenge of letting myself just be fully myself without worrying that people are going to abandon me.”

“My inward journey is asking me to receive love. And I can’t receive love if I’m not authentic about who I am and what I’m going through and allowing people to love me. And I have to remember that some people aren’t going to be able to handle it. And that’s okay.”

“You can’t ever just relax, because you’re always, ‘What’s the next thing?’ you know, or ‘What symptom am I dealing with at this moment?’ It’s always a symptom. It never goes away.”

“Just the energy it takes to pass as, like, fitting in, or to pass as able-bodied is so much that you, like, need to come home and sleep sometimes.”

“I appreciate, you know, people doing things for me. But ultimately, it’s just spending one-on-one time with me, you know, sharing things about what’s going on with you, and have a conversation with me.”

“You don’t have to choose between this source inside and love from others. You get to have both.”

Links:

Email questions or feedback to Melissa@senselessthepodcast.com or

Melissa and Sherry are back for a refreshingly honest and powerful conversation about breath, breathing, and being grounded while living with sensory loss and chronic illness. They begin with a brief update on Sherry’s immunoglobulin intravenous treatment, Melissa’s update on her experience learning ASL, and an explanation as to why it’s so crucial for ASL instructors to be part of the Deaf community themselves. They go on to share their thoughts on Facebook potentially becoming a virtual reality community, and acknowledge that, while technology has offered us many incredible advantages - particularly for those living with sensory loss - it can also have a scary side.

Next Melissa talks about having implantable collamer lenses in her eyes, and Sherry discusses her own vision issues, as well as the experience of temporarily losing her sense of taste and smell due to COVID last year. Our hosts explore the importance of breathing, and Melissa breaks down how it affects the way we perceive the world around us from a biological standpoint. They also chat about flare-ups related to food, regulating cravings, and living with a balance of moderation. Finally, you’ll hear a moving reading of the poem “A Blessing For One Who Is Exhausted” by John O'Donohue, Sherry and Melissa’s passionate discussion about learning to break the rules, and a closing breathing exercise that will leave you feeling a warm, comforting glow from within.

This podcast is not psychotherapy and does not contain medical advice, but is simply a recording of two friends talking.

Episode Highlights:

• Melissa and Sherry begin with an update on Sherry’s immunoglobulin intravenous treatment
• Melissa’s experience learning ASL and enrollment in a Queer ASL class
• ASL instructors are typically Deaf or hard of hearing themselves as it is crucial for them to truly understand the Deaf experience and culture
• Facial expressions are very important when communicating through sign language
• “Ready Player One” and the possibility of Facebook becoming a virtual reality community
• Technology has so many incredible advantages, especially for those with sensory loss, but it can also have a scary side
• Melissa shares that she has implantable collamer lenses in her eyes
• Sherry discusses her own experience with vision problems and temporarily losing her sense of taste and smell due to COVID
• Sherry uses her ears to see and Melissa uses her eyes to hear
• Staying grounded while living with sensory loss
• Breathing is crucial - it’s Sherry’s connection to the higher self 
• Melissa gives a fascinating breakdown of how our breath can change the way we perceive the world around us
• Sherry’s experience with anxiety and panic
• Melissa’s flare-up after eating bread and trying to regulate cravings
• A reading of the poem “A Blessing For One Who Is Exhausted” by John O'Donohue
• How Melissa overcame the belief that she couldn’t meditate due to the ringing in her ears
• Breaking the rules and focusing on your breath
• The rules do not take sensory loss into consideration
• Guided breathing exercise

Quotes:

“I'm actually learning more than I did in any of those other classes.”

“That's why I always say the universe has your back.”

“I'm also glad that I didn't get into the immersion program, because it seemed like it was going to have a lot of ableist problems.”

“I think it's sort of frowned upon for hearing people to teach ASL… It feels wrong for hearing people to learn it from other hearing people for fun or something when it's a whole culture.”

“Yeah, I have implantable collamer lenses in my eyes.”

“I'm using my ears...

Sherry and Melissa begin today’s episode by checking in about their recent health challenges and flare-ups. They chat about the brain fatigue and exhaustion that often comes with sensory loss, and Melissa explains how she overflowed her “inflammation bucket”. They chat about the personal sacrifice it takes to live with chronic illness, the importance of meeting mental health needs for fun and connection, and having balance in their pursuit to eat a clean, anti-inflammatory diet. Sherry also describes how a sandwich led to a spiritual revelation with her therapist, and how her sense of “gallows humor” has helped her get through so many difficult situations in life.

Next, Sherry and Melissa reflect on the idea that we are only inhabiting our bodies for a short time. This can offer a sense of peace as we navigate life with chronic illness, and knowing that everything will be okay can empower us to take on a liberating “Everything is magic/F*** the world” mentality. Our hosts talk about calling on a divine light or source for help and compassion when we feel we can’t give them to ourselves, and Sherry offers one of her favorite mantras to remember that we don’t have to love what we’re going through to love the one going through it. Finally, Melissa concludes the show with mindfulness breathing exercises.

This podcast is not psychotherapy and does not contain medical advice, but is simply a recording of two friends talking.

Episode Highlights:

• Sherry’s plasma exchange and tunneled catheter
• Melissa’s recent flare-up with her hearing loss condition, and conflicting advice she’s received about how to cope with flare-ups
• Individuals with sensory loss tend to get easily fatigued
• After a scare, Melissa is feeling grateful for her hearing, albeit limited, and more connected with her full self
• She overflowed her inflammation bucket
• Learning to live with physical limitations is an ongoing process
• Sometimes they’ll push themselves and suffer the consequences later, but it can be worth it to meet mental health and connection needs (e.g., Sherry’s recent barbeque)
• You can’t neglect your other human needs
• An anti-inflammatory diet is important, but should not consume you to the point of obsession
• You need to take care of yourself and pay attention to what your body is telling you
• Sherry’s use of  “gallows humor” to get through tough situations in life
• She can have a sense of humor because she knows everything is fine and she is only inhabiting this body for a while
• Everything is magic/F*** the world
• Darkness is a wonderful teacher
• It’s important to have love and compassion for yourself, and Sherry finds it helpful to call on a divine light for this when she feels she can’t give it to herself
• Calming breathing exercises

Quotes:

“Since I went all holistic and natural, I haven't really been in a medical environment or a hospital for about five years.”

“Every single person I dealt with was fantastic. They were kind and compassionate and sweet.”

“My struggle bus is up on blocks.”

“I had a flare up of endolymphatic hydrops condition where I have the roaring in my ears and the hearing loss, and I went and got a hearing test. And I had lost a big chunk of my low frequency hearing.”

“I have a little less than 50% hearing in my good ear.”

“The whole thing is exhausting. It's just freaking exhausting to try to navigate life.”

“We get really easily fatigued, because a portion of our brain is just not being utilized the way it's normally supposed to be utilized.”

“Right now I'm in a place where I'm so grateful for hearing, and also just more connected with my whole self.”

“I overflowed my...

When it comes to progressive sensory loss or any kind of degenerative health condition, it’s easy to feel like you’re losing something. But on today’s episode, Melissa and Sherry talk about reframing this as a healing process, and embracing the spiritual evolution that can come with it. Whether you’re connecting with your higher self, the universe, or divinity, it’s all about respecting the process and accepting that it’s what’s happening. While you may not be able to control what’s happening with your body, you can control your perspective and choose to look at this experience as an inward journey to self-love. 

Our hosts describe this journey of acceptance as a healing process of the soul, the mind, and the psyche - not just the body, and they reflect on letting go of the need for things to go a certain way. Melissa recalls her early experiences of hearing loss, and how a simple switch from spiraling into fear, to accepting that it’s what’s happening, could have changed her perspective entirely. Sherry acknowledges that we don’t have to like what’s happening to our bodies to be able to respect the process and gain something from it. They expand on their own moving experiences along this journey, and describe how music, comedy, and poetry have helped them find light in dark times. Finally, Melissa closes the show with another calming breathing exercise.

This podcast is not psychotherapy and does not contain medical advice, but is simply a recording of two friends talking.

Episode Highlights:

• Melissa’s startling wakeup call
• Sherry is taking care of the logistics before starting her next phase of medical care, and shares how she’s feeling about it
• Sherry’s frustrating experience filling out forms online and lack of accessibility for visually impaired patients
• Melissa is finally going to take a vacation from work
• Sherry is no longer having her recurring dream about getting stuck ever since discussing it out loud, and she’s now able to see in her dreams
• Sherry is using dictation on her phone and computer
• Today’s topic is, “It’s what happening,” or “Respect the process”
• Spiritual evolution that happens in the healing process, whether you’re connecting to your higher self, the universe, or divinity
• The only thing you can control is your perspective and embrace your experience as a journey to self love
• It’s a healing process, letting go of things needing to be a certain way
• You’re healing the soul, healing the mind, healing the psyche - not just the body
• You don’t have to like what’s happening to be able to respect the process and what you can gain from it
• You can’t rush through the pain because it’s a process
• You can experience extreme darkness and pain and peace at the same time
• The Hilarious World of Depression podcast is a great example of finding humor and light in pain
• Opening up to things you can’t see in the world 
• Melissa reads “How to Live With My Body” by John Roedel
• Breathing exercise

Quotes:

“Ever since we talked about the dreams, I have not had one single dream where the road is stopping me or I can't get where I'm going.”

“Now I'm doing all kinds of things in my dreams!”

“If you're listening, and you're having a recurring dream that's bothering you, maybe tell somebody, say it out loud and see what happens.”

“It's what's happening. It's worth repeating. It's worth repeating many times during the day.”

“It's a spiritual evolution that's happening in the healing...

Sherry begins today’s episode with an update on her recent diagnosis regarding the uncomfortable numbness in her hands, and her next steps for treatment. Melissa and Sherry revisit their conversation about dream work, and discuss how liberating it can be to speak upsetting thoughts or feelings out loud to another person, as holding them in can make them turn darker. Next they talk about loneliness and isolation, both during the pandemic, and also the deeper sense of “soul loneliness” that often accompanies chronic health issues or sensory loss. They discuss the shame attached to loneliness, their preference for one-on-one conversations as individuals with sensory loss, and how loneliness can be a rite of passage in the spiritual journey toward growth and maturity. Finally, Melissa reads the moving words of John O’Donohue in his poem “For Loneliness,” and the show closes with a breathing exercise that calls on listeners to meet their loneliness with compassion.

This podcast is not psychotherapy and does not contain medical advice, but is simply a recording of two friends talking.

Episode Highlights:

• Sherry received a diagnosis regarding the numbness in her hands
• She has relapsing-remitting MS, which causes demyelination and lesions on the brain and spinal cord
• Sherry’s numbness is extremely uncomfortable and she likens it to the feeling of ants crawling under her skin
• Steroids are the first line of defense for demyelination, but Sherry had a very bad allergic reaction to steroids and does not want to go that route - instead she’ll be doing plasmapheresis
• She’ll need to have a port put in and go in every other day for this procedure
• She’ll also need to have an IV infusion - intravenous immunoglobulin
• Sherry loves the doctor she is working with now, and it makes all the difference to work with someone who truly listens and cares
• She will also be trying hypnotherapy with her psychologist, and Melissa notes that this is similar to the dream work they discussed last time
• Melissa shares that when she has a recurring dream or a thought that’s bothering her, sometimes simply saying it out loud changes it
• Holding on to upsetting thoughts or feelings can make them turn darker
• Next, they speak about loneliness and isolation, particularly during the pandemic
• Melissa only had one person in her quarantine “pod” and would go weeks without seeing anyone in person
• After three weeks of isolation, Melissa felt a deep sense that something wasn’t right - she finally figured out that it was loneliness
• Sherry feels that being met with loneliness is a positive step toward growth and higher consciousness
• She shares her own experience of loneliness after she first got sick and felt like no one else could understand what she was going through
• She felt like she was inside of a cocoon and there was a healing happening inside
• This comes back to leaving the pieces on the ground
• Sherry had trouble understanding true loneliness before she got sick as she is an introvert and always enjoyed alone time - but this was different kind of “soul loneliness”
• In the past, if Melissa felt lonely, she would ignore that feeling because it’s so attached to shame - there’s something wrong with you if you’re alone
• Melissa and Sherry both prefer small groups of people because their sensory loss can make big crowds overwhelming; it’s easier to communicate with one person at a time
• Trying to process what everyone is saying can bring on mental fatigue
• If you move through the feeling of loneliness, the shame goes away and the truth is revealed - there is nothing wrong with being alone
• “For Loneliness” by John...

On this episode of Senseless, Sherry and Melissa begin with a health update and talk about the peace that comes with acceptance and being gentle on yourself. They discuss the power of positive self-talk and self-compassion, especially in times of flare-ups, and they share their experiences of coping with anxiety and depression during their darkest periods. Sherry and Melissa also touch on feelings of isolation when their physical symptoms become too much, and explain how they look inward to soothe the part of themselves that’s overwhelmed by pain and discomfort.

Next, our hosts chat about whether their sensory loss appears within their dreams, and how their dreams have changed over time as their hearing and vision have shifted. Sherry goes into a recurring dream she has involving an extremely steep hill while driving, and Melissa helps her uncover what it might mean in relation to her waking life. They talk about paying attention to the messages your subconscious is trying to tell you, and conclude the show with some calming breathing exercises.

This podcast is not psychotherapy and does not contain medical advice, but is simply a recording of two friends talking.

Episode Highlights:

• Sherry is still experiencing numbness in her arm, and is coming to a place of accepting it rather than hoping it will go away
• Recent bloodwork showed that she has several active viruses, including Epstein-Barr Virus, Mononucleosis, Cytomegalovirus, and several influenzas
• Melissa also had a flare-up since the last recording, but is using supportive self-talk to cope and get through it
• Positive self-talk and self-compassion, especially during flare-ups and times of anxiety and depression
• Divinity wants to experience being in human form
• During flare-ups, Melissa’s hearing goes way down and her tinnitus becomes intolerable
• They love all feelings, including anger as it shakes things up
• Living through flare-ups can be isolating, and holding the belief that you are not alone, whether that be through the presence of divinity in your body or simply by acknowledging your feelings and talking to them, can help the experience feel less lonely
• You can comfort and soothe that part of yourself that’s overwhelmed by the pain and discomfort
• Ask yourself, “How would I soothe a child who was experiencing this?” And do that for yourself
• Melissa can usually hear in her dreams, but she still has dreams where she can’t hear someone or they are speaking too softly to hear
• Sherry does not typically see in her dreams
• She shares her recurring dream involving an extremely steep hill while driving, and Melissa helps her get to the bottom of what that might mean for her waking life
• Melissa became very interested in lucid dreaming after a depressing experience with vision problems in her 20s 
• Paying attention to what your subconscious is telling you
• Guided breathing exercises

Quotes:

“I just have a lot of inflammation. And I have a lot of viruses. A lot of active, active - I'm not contagious, but I have active viruses that my body cannot control.”

“That must be part of what the autoimmune stuff is - when our body’s got such a high viral load that it can't handle it all.”

“I remember laying on the ground...I was being so stoic and just kept going and going and going. And I do remember, my kids were little when this was happening. And I remember throwing myself on the ground and I was just in a ball. And I was just kind of screaming, kind of wailing - because it's a big deal to lose a sense.”

“It ends up being a thing where you have to really go within and...somehow getting to that place of love and compassion, and being gentle with yourself.”

“It's so hard to be in...

Today on Senseless, Melissa and Sherry discuss the idea of being labeled “non-compliant” as individuals with sensory loss, and taking their power back by wearing this distinction with pride. They talk about the importance of trusting your intuition, listening to your body when something feels off, and advocating for yourself even when doctors are unwilling to listen. They share a laugh as Sherry recounts the story of finding her medical file stamped with a giant, red “Non-Compliant” at her doctor’s office, and Melissa points out that people are often labeled this way if they don’t fit into the mainstream, able-bodied mold. You’ll hear Melissa’s empowering story of being “non-compliant” when she experienced a severe mechanical issue with her hearing aid, and Sherry reflects on an incident at a teaching hospital where she wishes she had followed her gut and not complied with doctors simply because they were authority figures.

Melissa and Sherry talk about flaws in the medical system that keep doctors from having the time and attention they need to really listen to their patients' concerns. They explain that while it's very important to listen to the medical advice of professionals, we also need to pay attention to our own bodies and not be afraid to speak up when something feels wrong or uncomfortable. Dealing with chronic illness or sensory loss can often make us feel like we’re “non-compliant” in our very existence, but today’s conversation lets us know that there’s nothing wrong with pushing for the support and resources we deserve - in fact, it’s something to be done with a badge of honor.

This podcast is not psychotherapy and does not contain medical advice, but is simply a recording of two friends talking.

Episode Highlights:

• Melissa’s story about not being able to hear beeping in her house due to low battery in her carbon monoxide detector
• Sherry and Melissa contemplate why they’re reluctant to use devices that might make things easier, like smoke detectors with flashing lights for the hard of hearing or locator dots for the visually impaired
• Sherry was feeling good, so she decided to have people over and pushed herself
• She paid for it later and felt run down for several days after
• Sherry reflects on feeling like she wanted to jump back in that host role, test the waters and live as though she wasn’t sick for a little while
• Melissa and Sherry’s automatic instincts are to give the impression that they aren’t really sick, especially around family and friends who may remember what they were like before sensory loss
• They feel like it’s still hard to ask for help and appear vulnerable in that way
• People don’t really talk openly about what it’s like to live with chronic illness, and people don’t ask them about it either
• Sherry’s story of finding herself marked as “non-compliant” at her doctor’s office
• Melissa points out the problem of labeling people as “non-compliant” just because they don’t fit into the mainstream, able-bodied mold 
• This gives the impression that their very existence is “non-compliant”
• Melissa’s story about going to the audiologist to have her hearing aids tuned and being told there was nothing they could do about a continuous, tremendously unpleasant buzzing sound when she wore them
• Eventually she finally found an audiologist who could help with this mechanical issue
• If she had been “compliant,” she would have had to suffer through this buzzing or live without hearing aids forever
• Being “non-compliant” should be a badge of honor because it’s you taking your own power and listening to your intuition
• Sherry looks back on her early experiences at a teaching hospital and wishes she had been “non-compliant” in those instances
• It’s important to trust your gut
• Doctors do not have the time and space to really listen