Choices

It's been so long, I hardly know where to begin.

I organized a regular practica, and then gave it up - not even a full year later. Not only was the practica not breaking even, but I'd have to be in bed the next day to recover from it.

I'm still selling custom Mr. Tango Shoes (Jorge Nel), and selling tango clothes from the US and Argentina. 

I still dance.

Sort of. Sometimes.

Rarely, if I'm honest. Once a week if I'm lucky. Twice a month is getting to be more common. A couple of tandas and I'm done.

I have choices to make. If I go to a milonga across town and I have a flare-up - I'm trapped. I don't drive, so I'm stuck until the dancer who brought me is ready to go home. I can make the best of it but since the cabeceo is a tradition largely ignored here, it means verbal decline after verbal decline - or running away to the loo, or outside, or to get a drink. All I really want to do is sit - not run around avoiding getting asked.

Worse, in a way, is that I really do want to dance. But there is always that one tanda too many, or the un-tested leader who digs fingertips into my ribs, and I'm in pain the rest of the night, the next day . . . 

Choices.

Just skip the milonga? Stay in? Sometimes it's just so much easier.

I miss dancing, but I'm afraid of the pain.  The fear is winning.

I didn't want to live this way. Making decisions based on potential pain instead of potential joy. And now there is even more than just the pain.

Three times this month, I found I could not swallow. Not because of pain, but because I couldn't make my muscles remember how to do it. A stupid thing, really. They only lasted a minute or so. And yet there was a quiet panic.

My fingertips can no longer feel the difference between very hot and very cold things - unless they are hard enough for me to push against. I burned myself trying to be able to feel the heat from a microwaved frozen entree. The panic gets less quiet, and a little more insistent, with that.

Vertigo. Fleeting, but unpredictable. My balance, which I train constantly, suffers occasionally, and like the vertigo, unpredictably. I'm fine, and then I'm not. What if that happens while I'm dancing?

Tremors when I'm over-tired. 

I bring my laundry list of bizarreness to my doctor and my hands are shaking. The thing I blurt out isn't one of the items on the list. It was too big to write down. For the first time in the 5 years he's been treating me, I cried.  

"I can't dance. I'm afraid to dance."

He puts a hand on my shoulder and then looks at my list. 

Tests. More tests. He requests an MRI and the insurance company refuses it until every other test has been done.

Low B12? No.
Lyme disease? No.
Lupus (Is this a House episode?) No.
Myasthenia Gravis? No.
Neurosyphilis? No. 
Acute Disseminated Encephalomyelitis? (I hope that's not on the quiz.) No.

So many tests that I stopped asking the nurse what they were testing for this time.

Multiple Sclerosis?
MS? That MS? 

My doctor sighed deeply. 'When everything else has been eliminated, well . . .  there is still the MRI.  And a few more tests."  

And in the strangest words of comfort I've ever received from a doctor, "there's still a chance you have some interesting, exotic infection."  He half-smiled. It worked, I smiled back. 

As I was leaving, he asked, "When is your next big dance to-do?"

"End of October - I'm going to Albuquerque."

"We'll get you dancing by Albuquerque."

Please. Yes, please.

6 comments:

Anonymous said...

I've followed you a long time; we've even exchanged a coupla emails about dance.

I'm a dancer but not a tango dancer and always found your discussions interesting.

I think you are immensely brave and I wish you Godspeed to Albuquerque.

Anonymous said...

Mhari
I have read your posts for years and used your blog as my reference point for other tango blogs..
I have a suggestion re your condition which may help...

Get your self some Vitamin D3.Lots of it.. And try it out about 2-30,000 international units a day for a month..

And to help prevent any side effects from the high does of D3, also take Vitamin K2...

You can order them cheaply from www.takeD3.com

Bill in Oz

Iona Italia said...

This entry gave me chills. I sincerely hope you don't have MS (onset is usually at a younger age). And if you do that you have a milder form with many remissions, enabling you to keep dancing and enjoying life, at least part of the time.

Sending you my warmest wishes!

Mari Johnson said...

Thank you everyone for your comments. @Bill, D3 (in fact ADE & K) are all part of my protocol. The diagnosis stands now as "Clinically Isolated Syndrome) until I can get the MRI's done. My insurance company is sitting on the authorization until I can get in to see my new neurologist.

@Iona, like the cases of many people with the disease, if this turns out to MS, the symptoms started years ago and may have been misdiagnosed. For example, I had my first experience with tremors in 2006 and it was attributed to an allergic reaction. (Never mind that it lasted 6 weeks.) Muscle weakness starting the late 90's was first attributed to fibromyalgia then autoimmune myositis. All the pieces look very clearly like other things, until taken in together into the same picture. Meanwhile, I'm waiting for the MRI's to find out what's really going on.

Thank you again for the well wishes - I appreciate them very much. ((abrazos))

sophie evans said...

You are so brave! Please, keep us posted. I found this on a website, Gardel's movies. Take a look, maybe some of these can bring you some joy!

http://www.yoyousastore.com/shop/dvd-movie/6-peliculas-de-carlos-gardel/

Anonymous said...

Hi Mari
I have in my hands newish book called " Why is there no MS at the Equator & How Brazilian Doctors are curing MS with High Dose D3" The author is a USA scientist named Jeff T Bowles.

I got it from Amazon. There is a kindle edition which is cheap.

I am about to start reading it but from other stuff I have read by Bowles it is about taking high doses of Vitamin D3 - in the range 30,000 to 50,000 IU's a day. And preventing the resultant Vitamin K 2 deficiency ( which is the reason why doctors do not advise this process ) by taking Vitamin K 2 capsules. And they are readily available as well.

Worth looking at in my opinion if only to see....

Bill