Is sudden hearing loss equivalent to an amputation of a limb? Does that loss manifest itself in anger or apathy or something else? Is it different for those who experience a progressive hearing loss versus a collapse of all their hearing?
Recently I posted a question on social media: “Has anyone utilized a grief counselor after experiencing a sudden hearing loss?”

The post resulted in a spate of responses. Some wished they had a resource when it happened to them. Others who found support through family and friends. There were those who “toughed it out” and others who found comfort through the power of prayer.

Robin Chisholm-Seymour, a bilateral cochlear implant recipient, and a fellow member of the Facebook group, Bilateral CI Warrior, has extensive experience in grief counseling for both hearing loss as well as those who have lost their animal companions was gracious enough to sit down with me for an interview to explore this subject.

We discussed grieving in broad and specific terms, common behaviors and coping techniques and commonalities as well as the differences in the way people handle hearing loss.

If you or a loved one has experience hearing loss, Robin’s insights will help you find the answers to cope with the loss and find a way forward.

Transcript

Richard:
Cochlear Implant Basics is a site for candidates and their families and friends. If you have been told you qualify for a cochlear implant, these podcast interviews tell how receiving a cochlear implant can be a life changing experience. You will meet recipients who face a hearing loss and that hearing aids could no longer provide comprehension of speech or music. They faced growing isolation, inability to socialize or compete in the world of business. The joy of music disappeared. They explain how receiving a cochlear implant changed their lives. Welcome to Cochlear Implant Basics. A reminder, Cochlear Implant Basics is not sponsored by anyone nor is it offering medical advice. Please consult your own healthcare provider.

Richard:
Good morning. I’m talking today to Robin Chisholm-Seymour, and let’s start by you giving me your name, the date and the city that you’re in.

Robin Chisholm-Seymour:
Okay. My name’s Robin Chisholm-Seymour. Yes, it’s a mouthful. And it’s November 7th, 2021.

Richard:
And what city are you in? Robin?

Robin Chisholm-Seymour:
I am in Alpharetta, Georgia, which is a suburb of Atlanta.

Richard:
Wow. Okay. Now just give me a little bit of background about your hearing loss, how old you were. I know you’re a bilateral cochlear implant wearer. So just give us a little bit of background about that.

Robin Chisholm-Seymour:
Well, my story began, I guess back when I was a child, I was born hearing, but I was around my grandmother who lost her hearing at age 12 from Scarlet fever. And she was mainstreamed. She read lips and pretty much did everything. I mean, she was such a role model. And at the time, of course, I didn’t know I was going to lose my hearing at all. She never ceased to amaze me how she lived life to the fullest. And what happened in my case, in the early 1980s, I was working in a psychiatric hospital. And at the time they had the overhead speakers for announcing and telling you to do this and that and during a meeting, somebody got up out of the chair and took a phone call. I never heard the overhead page. So I decided, and some people suggested, oh, just get your hearing checked.

Robin Chisholm-Seymour:
And I was in my early thirties at the time. Had my hearing checked. And it had diminished in both ears to the point that I really needed hearing aids. So back in the early 1980s, I started the process of hearing aids and then getting bigger ones and bigger ones and stronger ones, but basically was gradually losing hearing in both ears. And then in 2009, I woke up one morning, I was blow drying my hair and got to this side, couldn’t hear the blow dryer. So I put it in the other hand and I didn’t have a lot of hearing, but I mean, I could hear the blow dryer and I put it over here. I’m even welling up now. I remember that morning and I just welled up and I thought, oh my gosh. So I called my audiologist right away. She said, come right in.

Robin Chisholm-Seymour:
And she tested me and I mean, it was all gone. And of course we don’t know why, but both of us cried that morning. We both just kind of let it out and got through with that. And then she said, but I know you’ve heard about cochlear implants. Honestly, I had heard of them. I didn’t know much at all. She gave me a couple names of cochlear implant clinics here in Atlanta and said, go get evaluated. So, I mean, I did that as soon as I could get an appointment, I actually did not meet criteria the first time. And I was very disappointed, but I was on the cusp and they said, look, just come back in a few months.

Robin Chisholm-Seymour:
I did, I met the criteria and in February 2010, I received my right implant. I wore a hearing aid still in the left ear, but it just continued to diminish. And in January 2012, I got the other ear done. So both ears are now with cochlear implants for about a decade. And I have since then had an upgrade to the processors as well. It’s been absolutely amazing for me.

Richard:
Okay. Now you have the bilateral. And what really intrigued me is a question I put up on social media last week, the week before, asking if anybody had gone through grief counseling, because I think we had a somewhat similar background. The fact that I had a progressive loss and a total collapse in my hearing in one month when I was 30 and I went into a tailspin and eventually I got therapy. So the theme of this interview is about grief counseling. And I understand you have a lot of experience. I would like to go right into that topic about grief counseling for sudden hearing loss and even progressive hearing loss. So if you could tell me a little bit about your background and that and how you work with people.

Robin Chisholm-Seymour:
Well, sure. Yes. My background is that I have a master’s in counseling education from the University of Miami and my career began in Miami as a Substance Abuse Counselor. And that was the field I got into. I made a decision for a number of reasons not to get my doctorate. I kind of wanted to go another route. And I ended up moving to Atlanta and worked many, many years, both in the private and public sectors, in the mental health and psychiatric field. I have been doing actually a support group for 14 years at a local veterinary hospital for people who are grieving the loss of their pets. And that is another what I call under identified and under treated area. So that’s something I do once a week.

Robin Chisholm-Seymour:
As far as hearing loss goes over the years, I noticed in fact, many, many years ago, I started telling people that there’s a psychological component to hearing loss. And you see that manifest in different ways. And again, as you asked me to everything I’m relating to is from either progressive as an adult or maybe older child, but progressive or sudden and hearing loss. And I realized that often people would say to me so and so blasts the TV and X, Y, Z. It’s very frustrating. You have to yell at them. They don’t understand what I’m saying and they won’t go get their hearing tested.

Robin Chisholm-Seymour:
So that’s one of the first cues that I had that something’s going on. In other words, if you’re losing your sight or you can’t read something or can’t see the television well, most of us, you have glasses, I have contacts and glasses. We go to the eye doctor. Usually we don’t put that off too long, but with hearing there’s a resistance to getting tested. The second area is that over the years, I have done a lot of meeting and speaking with groups of people with hearing loss or groups of people in senior centers or senior living arrangements, senior neighborhoods. And I talk about hearing loss. One of my first questions always was, if you have hearing aids, are you wearing them? Or, are they in a drawer? And the show of hands was amazing how many had them, but weren’t wearing them. So that was another key.

Robin Chisholm-Seymour:
And then the third thing for me that has become extremely apparent over the years, as I began to voluntarily support others with hearing loss as a volunteer, which I started formally doing in 2011, what I realized is in getting that cochlear implants the resistance of people in moving forward or even acknowledging they have an issue. The other piece of it is seeing so much anger and frustration from either people I talked to or online regarding either their hearing loss or how other people relate to them and don’t support them. Or a lot of frustration if they get a cochlear implant, let’s say anger and frustration focused on that process and a solution. So all of these things, putting them together, I can’t pinpoint the date that sort of the light bulb came on for me. But I started saying to people, we grieve the loss of our hearing. I hate to call them symptoms, but let’s say behaviors that are being manifest are very much reflective of feeling and going through grief.

Richard:
Is that the same as having an amputation? If somebody loses an arm or a leg, do they go through the grieving for the loss of that limb?

Robin Chisholm-Seymour:
Well, and that’s what I was going to say. Grief can be from loss of anything important to you. So it can be loss of a loved one. It can be loss of a job. It can be loss of any of your senses or certainly body parts or functioning. If someone let’s say becomes paralyzed, they’ve lost function. And of course I add loss of pets and I know you’ve got your puppy there. A lot of people don’t understand how deep that loss can be.

Richard:
I got that. I’ve buried four dogs so far. And the dog I have now is 15 and a half.

Robin Chisholm-Seymour:
Oh.

Richard:
So I understand that part about the pets and the grieving.

Robin Chisholm-Seymour:
So as far as hearing loss goes, I’ve never done a formal study on this. I haven’t kept notes through logs, but my observation over time, and a lot of what I do when I’m supporting people, is help them acknowledge and maybe even just identify that they’re grieving that loss and that their feelings and behaviors are reflecting that.

Richard:
A lot of the posts to my question, a number, not a lot, I think were in denial.

Robin Chisholm-Seymour:
Yes.

Richard:
They say I have family. I push my way through it. Now, men tend to do that a lot more than women. I understand that because men are not as bright as women. They hold a lot of stuff in. So we got that part, but how do you deal with somebody who you feel is in denial?

Robin Chisholm-Seymour:
There are several, they call them stages of grief and Elizabeth Kubler-Ross is the therapist that many years ago, penned these different stages of grief. They’re not necessarily however stages that are sequential and you may not feel all of them, but denial is usually the first one and can be manifest in different ways. And the other two that I see the most to be honest is anger and depression. Okay? So those tend to go together. Someone may be feeling one and not everybody is depressed necessarily is anger or feels anger.

Robin Chisholm-Seymour:
But yes, the start point generally in my observation, all these years is denial. And that feeds back to not getting help of any type. In other words, it may not even be going for an evaluation. It may be doing things every day to help yourself function better. So a lot of that has to do with relating to other people and conversing and advocating yourself so that you can function better. So if you’re in denial, you’re just sort of plowing through and not doing much about it. So the denial piece is key. And the way to do that is really to kind of reach deep down and look at your feelings because oftentimes we have other people in our lives, family and friends, to some degree that are pointing this out to us, but we don’t want to hear it. So part of it is you have to open yourself up to that. And of course it’s painful.

Richard:
You brought up a very important point because I’ve worked with couples through the Hearing Loss Association of America, the local chapter, and the unsupportive partner is the biggest problem that I’ve seen. They don’t want to know anything about their partners hearing loss. They don’t want to cooperate in that. How often do you see that?

Robin Chisholm-Seymour:
I can’t say I’ve seen it be pervasive. I see some fabulous, significant others that are, and let me say this there’s degrees of support. Okay? I will tell you my own case. My husband was extremely supportive through all of this with me, but one of the big things I hear people daily complain about, oh, my spouse still tries to talk to me from the other room or when they walk away or whatever, and they get angry about it. What I had to realize was, and we all do, hearing loss is invisible and yes, there are those of us who pay attention and remember, and always act accordingly. The majority of people don’t, and it’s not something personal. It’s not that they’re actively being non supportive. They just don’t think about it. When I work with couples, try to get down to the degree of non-support.

Robin Chisholm-Seymour:
And I actually was talking to a couple not long ago because when I do virtual sessions, let’s say with candidates or recipients, I try to have the significant other there so that they’re involved in it. But yes, I do run across cases where if you drill down to the degree of lack of support, some of it is other things going on in the relationship that is a whole other issue. Part of it is it’s just easier not to deal with it. And part of it is the interaction between the two, because hearing loss affects both of you. And so it’s part of working on that relationship, both in terms of how we, as those with hearing loss, relate to others and what our expectations are, but the other big, big piece of it is communicating and advocating for ourselves.

Robin Chisholm-Seymour:
And as an example, I’m 70, my mom is 89. She wears hearing aids. The biggest struggle I have with her, and I think it’s generational, she is not good at communicating when she’s not understanding something and I can see it on her face. And I’ll say, “Mom, did you get that?” And she won’t do what I do, which is I’m sorry, I didn’t understand that. Could you repeat it?

Richard:
She bluffs.

Robin Chisholm-Seymour:
Yeah. So getting back to the couples, if there is the feeling that one of the partners is non-supportive, a couple things have to happen. One is you have to drill down to what really is beneath all of that. And you have to look at the, like any relationship, and I’m not going to get off into marriage and relationship counseling, but communications has to be two way. And often I find that the person with hearing loss is just making too many assumptions and expectations of that person rather than sitting down and saying, “This is really how we have to operate to do this.” Does that make sense?

Richard:
It makes perfect sense. I need to go back to one point though.

Robin Chisholm-Seymour:
Okay.

Richard:
Let’s say you’ve had a sudden hearing loss and maybe you accept your grieving. What do you do at that point? How do you handle it? What steps do you take?

Robin Chisholm-Seymour:
It depends on the individual to be honest. Acknowledging it is the first step. The next thing that I always suggest is action. Action always overrides a lot of times how you feel. And so whatever that action plan might be for you, I mean, that’s going to vary. In my case, I have to get up and do something. So that’s when I started getting information. I joined the local, at the time that I since have started doing myself, but the local cochlear implant support group. I kept moving forward with action. And I didn’t personally feel I needed counseling for it because even…

Richard:
Denial.

Robin Chisholm-Seymour:
I wasn’t denying the issue. I knew I had lost my hearing, but my way of handling it works for me. Okay? Now that doesn’t mean it works for everybody. Here’s where counseling helps. That’s where you need someone objective to listen, to understand, and often we use the term get it and then help you with dealing or coping with it.

Richard:
That’s a very important point. I want to discuss this. Okay. The type of counselor that you look for.

Robin Chisholm-Seymour:
Right.

Richard:
Some people would say life coach, other people would say, well, I want a counselor who has a hearing loss or understands hearing loss, which is very hard to find. The other one I found, I was very fortunate when I found a therapist who had survived leukemia, he had a death sentence and he survived that. So he understood my loss. So my question is how do you go about finding the help that you need?

Robin Chisholm-Seymour:
And that’s a challenging question. I’ll be perfectly honest. There’s degrees. When you talk about a life coach, there are options. I mean, one is you can seek out support groups for this specific issue of yours, which we have now a good available choice among support groups. That’s the kind of easiest one to feel you’re with people who get it and understand. If you feel you need more intensive one on one attention for a while, and there are different types, I mean, a life coach is going to be someone that is encouraging and positive and helping you work out a game plan for yourself, an action plan. Counseling has different levels and definitions, and there are different even types of counselors or therapists.

Robin Chisholm-Seymour:
There are licensed clinical social workers. There are people with my degree that are licensed clinical counselors. You can go up a notch to a licensed psychologist. That’s going to make it more intense. But back to the question, most counselors will state that if they do grief counseling. Okay? I mean, they’ll usually say the types of counseling because if they work with kids versus adults, or if they work with older adults and there’s different styles of counseling, they usually advertise that. Now the challenge is sometimes finding the right one and we’ve had that challenge among the people in the pet loss group also.

Richard:
You just triggered something. I wonder if calling the local funeral home would have a resource for grief counselors. I’ve never thought of doing that before.

Robin Chisholm-Seymour:
I hadn’t thought of that either, because usually nowadays with Google, what I usually suggest is that people start, if they have a primary care physician, usually that’s the first person a lot of people talk to anyway, or their ENT or hearing clinic, whatever, whoever that is. Some of the ENT clinics will have some kind of relationship with a counselor or therapist, not all. But those are the ways that usually I suggest people start. It’s hard to just pull out the yellow pages. Local support group, I would contact your local HLAA if there is other hearing related groups in your local area. And the other piece of it yes, is that when you contact someone, you really need to do initial due diligence and find out, like you did with the person who had had leukemia, get some background about them. Because grief counseling generally may focus more on either loss of human loved ones and, or losing your job, which can be prevalent over the years. That’s not uncommon at all. Those are probably the two big ones.

Richard:
Another question somebody posted or brought up to me was parents of pediatric cochlear implant recipients. The parent obviously goes into a panic at some point, but is that grief or is that loss of some sort, how would you interpret that?

Robin Chisholm-Seymour:
Now I, first of all will say, I’m not a parent. So that may be someone to ask more of the parent. But being a parent is a whole different thing because that’s going to be a myriad of feelings because your child is hurting and needs attention and care. So how much of it is grieving their loss of hearing versus the emotional stress of trying to help them is going to be different.

Robin Chisholm-Seymour:
They’re going to be kicking in that parent mode of what am I going to do to help where as when I lost my hearing that morning, the only thing I thought about is I got to help myself. And I think that’s where counseling can help if other levels of support, which also include, I mentioned the support groups, but if you have supportive family members and, of friends, or even through a support group, or even these online groups, now we have some mentors, of which I’m one. I don’t formally counsel anybody, but a lot of it is providing support. And then if I feel they need, and I do this with pet loss too, if I feel they really need a more intensive level of care or attention, then I bring that in as a suggestion that they need to consider to move on.

Richard:
What about the progressive loss versus the sudden loss? You’ve seen the difference you’ve spoken to the differences. Do you want to address that a little bit?

Robin Chisholm-Seymour:
Yes. And it is. And having lived through both of them, I can say how the different reactions were. The progressive to me can be more difficult in some ways, but also easier. And the progressive, you may be just building up your denial over time. And built into that though, what gets built into progressive is that unbeknownst to us, we are adapting. I honestly didn’t wake up one day and say, “Oh, I’m going to start to read lips.” I don’t know when it started. I read lips pretty much proficiently, but I can’t tell you, oh, when did you start? Or when did you go learn to read lips? The other things I learned to do over the years and because my hearing loss started, as yours, before we had as much technology as we do, had to learn to function as best we could.

Robin Chisholm-Seymour:
So tied into progressive is our brain trying to make it work somehow. Now sometimes we get in our own way. So with progressive over time, you’ve heard people say, “I’m doing just fine. I just turn the TV up. Or if I don’t want to hear something, I just let it go. I don’t care. I just nod.” Right? Some of that in progressive, you know what you’re doing, but you also are behaving in ways you may not be aware of. And so that can either tie into denial, or for me, it was always fuel to figure out a way to do what I wanted to do. I was working full time, I was having to travel for business and go through the airports and not hear what the pages said. I had no streaming. I had no mini mic. I had no nothing except texting on the phone, which wasn’t big when I got started either. Right?

Robin Chisholm-Seymour:
I had to with clients, tried to switch them to the written word, like emails and my, I hate to use the word excuse, but my explanation was to do business this information needs to be in writing. And I used that over the years. So for progressive you either allow it to sink you more into denial or you use it to help figure out ways to get things done. With sudden, sudden puts you in a panic mode. So you have to deal with that adrenaline rush and that sort of freaking out. And, “Oh my gosh, what am I going to do?” Generally there isn’t denial as much when it’s sudden until it kind of sinks in and you’re having to deal with it and figure out what to do. And usually when it’s sudden, that’s when I see much more anger. I see much more the anger that kicks in and starts affecting all kinds of things. My family’s not helping me. I can’t understand when I go to the doctor, I can’t work anymore, et cetera, et cetera.

Richard:
Okay. You’ve covered a lot of ground and I’m sure your interview is going to be helpful to more people than you can imagine. But before we close off, I like to give you the opportunity to add to anything you would like to about the process of sudden hearing loss and how to handle it.

Robin Chisholm-Seymour:
Well, first, I really appreciate this opportunity. When this came up, I was so excited because it is something that I’ve been sort of addressing quietly for a long time and it’s near, and dear to me. What I would add definitely is take care of yourself and whatever you feel might work for you, even if it’s baby steps, I’m a big proponent of action. And even if it’s one small step, take a small step. Whether it’s a phone call or an email or a text or Googling something to find out about it. Do something, because any small action gives you a sense of confidence and helps you move forward. Whereas I think we tend to feel overwhelmed with the big picture and that makes it harder to take action, but just pick sort of one small thing and almost one every day. And that helps you move forward.

Richard:
Robin, thank you so much for your time and your expertise. I really do appreciate it. And I’m sure that our listeners will too

Robin Chisholm-Seymour:
Well, thank you so much, Richard, for the opportunity.