Meniere's-- "As The World Spins" » van Gogh

Help For The Helpless

dlbach — Fri, 26 Mar 2010 15:33:12 +0000

Anyone with a chronic illness or close to someone with a chronic illness is all too familiar with the feeling of being helpless. I feel that way so often I sometimes think I don’t have any other feeling inside me. Last night I was in Second Life® and chatting with a friend who also has Meniere’s Disease. To start, Second Life® is a virtual reality world on-line where I got my life back after the dragon of Meniere’s invaded. I was able to use my avatar to do things that I could no longer do in Real Life. You can check out my Second Life® blog for more about that world. The gentleman I was chatting with was experiencing issues due to Meniere’s and was also expressing some frustration regarding his girlfriend’s difficulty understanding what he goes through; but she tries her best to be as supportive as possible. I recommended he read this blog and also check out a DVD put together by another person with Meniere’s to help loved ones and those new to the illness to better understand.

The thoughts for this blog post have been forming for a while, then last night they were coming closer to the surface. This morning I had a bit of a FaceBook e-mail exchange with another friend and helping to educate her about Meniere’s. Again, as I was confidently typing my responses to her I couldn’t help but feel so utterly and completely helpless inside. Sometimes I have to step back and look at myself. I have the ability to display to the world the most confidence and surety while inside I am falling apart at the seams. Where do the helpless go to get help and support? What can we do to sure up the rupturing dams within?

There are some forums on-line and for some of the lucky there are local support groups you can attend in your area. I have been part of these forums, but there are no local support groups to attend. I have been approached several times to start one in this area. However, giving how I feel and knowing it would be common, I believe it would be difficult as we don’t always feel like sitting in a room with others trying to be supportive and therefore we opt to just stay safe and comfortable on our couches and beds. Sometimes we are supported by spouses, children, parents and others who are there or come over to help out. I survive on my own. I have been trying to be supportive of a few others with Meniere’s who need a shoulder and an ear (not that I have much left in the way of ears **insert chuckle here**). I am glad that I can be here the best I can for anyone who needs me. Just ask. If I don’t have the answers I will try to find them or direct to the answers the best I can.

Let me go back to something I mentioned earlier. Danny Pancy is a gentleman who has Meniere’s Disease. He is also a photographer. He put together a 20 minuted DVD to help others understand what we with Meniere’s go through. The only audio is white noise since we have tinnitus in our ears 24/7. Mr. Pancy has used his talents as a photographer and the wonderful technology available to distort photos to help display the way we view things. I have shared this DVD with others so they can better understand. It helps them feel a little less helpless. Check out Mr. Pancy’s DVD on his website http://www.shutterfreaks.com/Pancy-Menieres/contact.htm.

For those who have Meniere’s we know there is really know way to feel less helpless when we are in bouts. For others, those who know us and care about us, staying away is not the way to help us or you feel less helpless. I know, too well, intimacy with loneliness. This adds to my stress, but I keep going on knowing it will always be this way for me. But I plead with others to reach out to those you know with Meniere’s and educate yourself, not for the purpose of trying to ‘fix’ them, but for the sheer purpose of trying to better understand. Sites like http://www.menieres.org/ and http://www.vestibular.org/ are great sources to start with. We just want to feel normal and feel like those who cared about us before the dragon invaded are still there for us and still care. Don’t be afraid just because we can’t do the things we used to be able to do. There are still other things we can do, like sitting and chatting about life and things in general. If you treat us differently, especially by disappearing, then to you we become the disease. Show us that we are still human beings worthy of your time and your friendship. The helpless feelings may never totally disappear, but they can be diminished in all of us.

As My World Spins

dlbach — Mon, 08 Mar 2010 17:19:22 +0000

I just returned from trying to go to the market for food since it has been well over a week since I have bought groceries. The pain from having the grommet reinserted into my right ear has finally subsided, but my head is still out of sorts and I still have the Xanax in my system. My head was trying to think and I was adding a Facebook status update and this poem came out. It was kind of long for the update, but I thought it would go nicely here. Enjoy!!

As My World Spins

The world it spins
faster, then faster still
I want to get off
that is my will.

Someone please help
make the spinning stop
I really don’t care
if it makes me drop.

My head is foggy
things are unclear
no wonder I’m alone
and no one comes near

The fog and spinning
they make me feel drunk
then I get tripped
by a smug little punk

The weather front comes
and so does the pain
if a cure is not found
I’ll sure go insane

I still think it right
I’ll not make a show
But if you do see
I’ll look like Van Gogh.

March 8, 2010

A Message To Mr. Van Gogh

dlbach — Mon, 18 Jan 2010 17:36:54 +0000

OF ALL THE CRAZY, INANE, FOOLHARDY THINGS TO DO!

You cut off your ear. Are you STUPID? OY! G_d goes to the trouble to put the things on each side of your head and you have to go and remove one of them yourself. You’re a painter, for Pete’s sake, not a surgeon. I can understand your reasons for wanting to remove your ear. The noise inside can really drive you nuts. You can’t hear well out of it. In fact, I have thought of lobbing off my own ear. The operative word being, thought. However, I need both of my ears to hold up my glasses. So again, tell me how can you be so imprudent? For the life of me, I just can’t imagine what must have actually been going through your mind to cause you to take such drastic measures.

I guess I only have one legitimate question for you:

Can you remove mine for me?

As The World Spins

dlbach — Wed, 16 Sep 2009 17:40:47 +0000

I chose this name for my blog (well, it was one of my brainstorms that Colette really liked and we went with it) because anyone who has or knows someone who has Meniere’s Disease knows intimately well that your world is like a spinning top.

I wrote a poem and an essay a couple years ago about my spinning world. When attending amusement parks, carnivals and fairs I always wanted to get on the rides that would spin. I loved the carousel and the TN Twister. If it spun I would ride it. I would be caught quite often, in spare moments, spinning around in my office chair at work. My favorite holiday game is Dreidels. I always liked to watch them spin around. Then one fateful day in the autumn of 2004 I started to spin.

Seeing the world spinning around when you are not on an amusement park ride nor intoxicated can be quite scary. Making things worse is the hearing loss and constant tinnitus that all but drives you mad. You sit and wonder what you have done wrong or could have done differently to prevent this monster from invading your life. Then there are the moments that you contemplate doing as van Gogh and cutting off the offensive anatomy realizing that you will no longer have ears to hold up your glasses and you let the feeling pass.

What are your thoughts and feelings? How do you cope? What is it that keeps you from going utterly and completely mad?