Tuesday, April 5, 2016



We all find ourselves part of groups. Some we choose, some we don't. For example, I have Meniere's disease, so do most of you that read my blog. We didn't choose to be part of this group, but here we are. At the same time, we chose to be part of the group that reads my ramblings. It takes an active commitment to do that.

I also am part of the world of people who are deaf. Notice the small d? This is a group that I did not choose to be part of, but here I am. The capital D group is a choice. And I'm not going there, figuratively or literally.

Then there is other social media groups. You have Facebook, Twitter, Instagram, Blogger. All choices. Yet within some of these groups are sub-groups you had no idea you were part of. In my case there is farmers, former farmers, (now) accountants, bookkeepers, etc.

I tend to be a bit more vocal in some of these groups. Just who I am, I guess. Others like to be in the background. You know, lurkers. That's fine as well.

One of the Facebook groups I am very active in is my brand of cochlear implants unofficial FB page called Cochlear Town USA.

Every now and then, a question pops up about our hearing loss and what caused it. It is interesting to see all the different reasons for hearing loss as well as the ages that people were diagnosed. We have people who had hearing aids before turning one year old all the way to never needing hearing aids until in their 70's. The more I read stories and do casual comparisons, it seems to become more clear that the longer one has had hearing loss, the likelihood of having immediate success with cochlear implants goes down. I see people who recently lost their hearing and receive the implants not miss a beat when they get switched on, and see people who have never heard well struggle for a time. We all get to good results over a period of time, it seems, but the longer a person is hard of hearing, the more work they need to put in.

In the case of Meniere's disease, I see more people have instant success than not. Typically this may be because we have only been deaf for a short time before implant. At least that is my opinion.

Along the way, as new people join the group, people share their hearing story and it is interesting to see how many have CI's because of Meniere's. Recently another one joined and has had the disease about as long as I have. They have also had CI's about as long. Fortunately for this person, they were able to use hearing aids for 10 years. My hearing crashed right through that stage in a few months.

An interesting comment made on this person's intro was from Menierian about how they never knew there was that many of us.

Yeah, there are more than we realize.

Part of reason that we don't "know" more is because it is such a isolating illness. Many people with many other chronic illnesses are able to go about their life in a relatively normal fashion. We go to bed. Well, not all the time, but you know what I mean. I have written before that my issues with Meniere's have been very intense, but very short lived, followed by periods of (I don't like this term) remission. During those active periods, I didn't go anywhere. Close to home, close to bed. It's hard to meet others when you are face down in bed praying the world will stop spinning. But other times, between active periods, I'm out and about. If I didn't talk about it, no one would be the wiser that I even had an illness.

That needs to change on a large scale. The only way to do that is for most ( I say most because I know some are not comfortable talking about their illness) to open up about it, but not in a "woe is me" kind of way.

For me, it may be easier to do because I have cochlear implants, which can be a conversation piece. I can't explain WHY I have them unless I tell people about Meniere's.

They go hand in hand.

It's kind of unique, I guess. My being part of 2 groups I did not choose to belong to have given me the opportunity to spread awareness about 2 groups that I did choose to belong to. Being deaf because of Meniere's allows me to talk about cochlear implants and another great organization, VEDA.

It's a natural fit. Peanut butter and jelly. Meniere's and deaf. Cochlear and VEDA. They just go together.

In the future I will tell more of what VEDA is all about and what it does for the world of vestibular disorders, but that will come.  If you have read any of my previous blogs, you now what Cochlear has done for me. Now I'm a volunteer for both.

And those are groups I'm glad to be part of.

'til next time


Just a guy trying to live with an invisible, potentially debilitating illness

No comments:

Post a Comment