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Mark Campbell’s Story as Both a Cochlear Implant Recipient and Audiologist

June 12th, 2011 by | Tags: , | 3 Comments »

Mark Campbell is both a bilateral cochlear implant recipient and a cochlear implant audiologist at Mass. Eye and Ear Infirmary in Boston. I interviewed him to hear his story of being both a cochlear implant recipient and audiologist.

Mark is on the right.

What is the cause of your hearing loss? How did you or your parents first learn about your hearing loss?

It’s assumed to be genetics because my sister and I both have hearing loss. I’m a late identified, first picked up around age 4 or so

Why did it take so long for your deafness to be identified?

Well, it’s sort of complicated. The bottom line is, we were born prior to newborn hearing screenings. So with that, you have later identifications. But where my sister was diagnosed at around age 3, which is when I was born, my mother wanted me to be tested. I was one of those “hard to test” kids – and basically, it wasn’t til I was 4 1/2 that I was picked up. At first people thought I was developmental delayed, neurological behind, and so forth.

As soon as your parents first learned about your sister’s and your deafness, what did they do? Did they get hearing aids right away and/or start doing any rehabilitation with you?

They got us started with hearing aids and lined up the appropriate speech services for us in the public school systems. My parents were instrumental in making sure that we received proper services as my mother realized this was a hearing issue, not a cognitive issue. She wanted to make sure that we were mainstreamed and given the most appropriate access. We used assistive listening devices (FM systems) and sat in the front of the class.

Did you face any obstacles due to your hearing loss while growing up?

Well I definitely had lower self esteem. I found it hard to socialize with other children and I really think a lot of it had to do with not being able to hear and feeling different with hearing aids. I was very into school though, and studied well and that was how I shined. But during elementary and middle school, I felt overweight, had acne, wore glasses, had hearing aids, some kids would call me “Helen Keller” in a negative light. In high school, things started to change, i dropped the weight, got contacts (no glasses!), and met some really great friends (who I’m still friends now over 15 years). That was basically my biggest obstacle with how I felt about myself. At first, I had to prove to myself that I was smart enough to be in honor classes. Some teachers wanted to keep me in lower classes because they felt I may fall behind.

When did you first get the cochlear implant and what led your decision get it?

I got my first implant on May 16, 2003. What led me to getting it was that my hearing loss was progressive.

How has your cochlear implant made a difference for you in your life?

It has been amazing. I don’t think I could do my job without my implant. What led me to getting it is my word performance and hearing loss was declining. Thus making me a good candidate. I really don’t think I could be an audiologist without my implants. I got my second side on April 1st, 2010.

What difference have you noticed between your cochlear implants and your hearing aids?

Word clarity. I can understand words so much more. Communicating with people is so much easier. Before I would be in the same with my family, and they would call my name and I would not understand what was said to me. Now, with the implant, all of that is easier. I don’t think I realized how much I was missing because my hearing loss was gradual. As I sit here, I can hear the people playing tennis, hitting the balls back and forth and that’s 2 rooms away!

What made you decide to get a second cochlear implant?

Honestly, it was because I was having a hard time communicating with others in the room when I was on the telephone with my cochlear implant. I had to rely on my other ear with the hearing aid and I wanted that ear to do better. I thought it could do better. I know there were no guarantees but it paid off. I feel more comfortable with people on either side of me. Before I would always have people be on my implant side. Now I’m okay with people being on either side even though I still prefer my old side. I notice that I can hear better in noise with the 2 processors. Overall, my first implant took care of a lot of my issues but the 2nd one is like icing on the cake and taking me that extra step. So the benefits weren’t overwhelming, but they’ve been subtle. I’m glad I have two.

What inspired you to be come an audiologist?

I originally thought I wanted to be a psychologist, but I felt that I would be more effective as an audiologist because I would be someone who has walked in their shoes and I love being an audiologist that works with cochlear implant patients. It’s really where my passion lies.

Did you feel that having experiences in being a cochlear implant recipient has been an advantage to your studies in audiology and if so, how?

I think its been an advantage to me working with my patients because I think I can empathize with them and know what it’s like, since “I’ve walked in there shoes.”

When you were pursuing your Au.D., were there many information that you knew that you wouldn’t have known if you weren’t a cochlear implant recipient?

Well it’s interesting because there are “simulation clips” of what an implant sounds like with varying numbers of electrodes and people are fascinated at what it could sound like and I’m listening to the same clips and it sounds artificial to me as well listening to these clips, and I’m thinking, there is no way that’s how my implant sounds to me! So I felt I had first had knowledge of what patient experiences are like since I was one!

Did you learn anything such as mapping techniques that you felt that would be beneficial to you as a patient? Have you tried any new techniques yourself?

I could map myself as that’s what I do but I don’t! I would be so biased! As a patient I find I’m more stubborn and not open to suggestions that I expect my patients to be open to when I’m on the other side of the table! I always try to think from there perspective “Would I want an audiologist to be doing this to me”
and if the answer is no ;) then I stop and think about it.

And whatever intellectual knowledge that I can integrate with my personal knowledge, I am always passing that down to my patients.

There has been talks about patients wishing that they could map themselves. What are your thoughts on this?

I really think it should be objective. With doing mappings you are setting the levels in which we hear the softest sounds and where our comfort levels are. It’s really easy to be biased here thinking “oh I know I heard that” etc when the patient really didn’t or we may have patients not setting comfort levels appropriately, be it too soft or too loud. There is an art to it and where we see significant amount of patients, we have the experience and knowledge of what things should “typically” be.

Have you done any of your own mappings?

Again, beyond the routine things of updates, etc, no. I have not created a new program and set levels as I’ve mentioned before I don’t want to bias myself I do this for other patients, but I draw the line when it comes to me.

Do you have any visions of what you hope to see in the future in terms of technological improvements with cochlear implants, mappings, and etc?

I always wish for better connectivity, better connections to FM technology, better connections to bluetooth technology. We are getting there, but I can always see room for growth.

Do you feel that being an audiologist has provided you as a cochlear implant recipient any advantages and if so, how?

Well in a way yes. I was able to update my N5 processor immediately when the release came out because I brought in my backup N5 processor and did the upgrade quickly. I think it has given me a better understanding of myself. I truly know the ins and outs of what is going on with me. And whatever intellectual knowledge that I can integrate with my personal knowledge, I am always passing that down to my patients.

Tell me about the fundraising project that you’ve been working on?

Well this is a 10k race for Clarke Schools for Hearing and Speech. I’m raising money for them for this race and all donations from new donors of $25 or more are tripled before June 30th, 2011. And… if they donate, then it helps me toward my goal! This is general info about clarke: http://www.clarkeschools.org/about/welcome
and this is where you’ll see me: http://www.clarkeschools.org/falmouth .

3 Comments

Shari Butler

January 24, 2012 at 6:06 pm

Would like to know which imant company Mark Campbell used. I am an
Occupational therapist that was identified late 8 th grade while you get
Brother at 3 years old. I have progressed to profound and it is effecting
My work TREMENDOUSLY to the point I want to quit. I have decide to get bilateral
Implants in 2012 spring. I have a one year old so I am missing a lot of
First words and cries. Mark story has been an eye opener and major
Encourager.

Elizabeth

January 25, 2012 at 1:34 am

Shari — congratulations on your decision to pursue better hearing with cochlear implants. HERE is a chart with objective data about all 3 CI brands that are FDA approved in the US (scroll down to “Brand Comparison Chart”). More important than brand, though, is the aural rehabilitation you will do afterward to get the maximal use out of your new “ears.” Best wishes as you go through the candidacy process. Hearing your child will be well worth it!

May 17, 2012 at 1:30 am

Hi Mark:

Thanks for coming down to Hartford Hospital to map my cochlear. I’m going to go solo and not use my H.A. in my other ear and leave my sensitivity button alone. I have a tendency to keep lowering it whenever i feel uncomforable in any kind of noise. Again thank you for making te special trip. Bill