Less Soup, More Brain

I finished reading “Awkward Bitch: My Life with MS” by Marlo Donato Parmelee.    

Through this detailed autobiography, I learned a lot about what happens after being officially diagnosed with MS.  So, when and if it becomes "official" for me and I can have a chance to start on disease-modifying drugs, I will know what to expect.  

Some sections of the book stood out for me.  This explains pretty well what happens to me sometimes.  Her hubby was telling her about an interview while she was experiencing the start of her first MS flare-up:

"I found it difficult to concentrate on what he was saying.  I could see his mouth moving, but couldn't really differentiate between his words and the background noise of the other people around us.  I seemed to be encapsulated in my own little world."

For me, an extremely frustrating part about MS is what I feel it has done to my brain power.  I used to be so sharp and quick.  Frankly, I know it is a matter of pride, for it's the one aspect about myself upon which I could rely. I've never been a girly-girl, so hadn't relied on my looks.  I didn't rely on being the jock because, well, awkwardness has been a constant companion.  I had a few talents (music, visual art, writing), but I was solitary enough that I didn't really share them with people.  So, the only thing that really set me apart was my intelligence.  

But, as MS slows my thought and memory processes, I feel less and less intelligent.  When I get tired and cannot keep my own brain on track in getting anything done, it makes me feel about as useful as an inkless pen.  As I watch normal interactions and conversations around me, I find myself wishing my hubby had met me during my brain's hay-day!  (grin)  Yet, he still married me.  [Audience: Say, "Ahhhh."]  Perhaps my brain isn't as deteriorated as it feels it is from the inside looking outward.

I feel the same way she does, too, when she was telling an associate about being diagnosed with MS:  

"The UK area manager, Simon's boss, came into the store that morning.  He was the man who had originally hired me and was quite fond of me.  He was visibly upset by my news.  His eyes started to well up with tears when I told him. 

" 'Are they 100 percent positive?  Do you think they might have misdiagnosed you?' he asked.

" 'No, I don't think they misdiagnosed me,' I said. 

" 'Are you OK? Are you sure you're OK?'

" 'I'm perfectly fine.' I kept answering. 

" 'You're very brave,' he said. 

" 'Believe me, I am not brave,' I said.  'Fire-fighters are brave; people who have choices are brave.  I don't have a choice, do I?  I can't pretend I don't have it.  I have to get on with things.' "

She lightened the mood with a joke right then, as she often seems to do.  I like this girl.

Photo by mechtaniya on deviantART.

"Jooly's Joint" is a web site she mentioned enjoying, so I'll link it here for you all.

For a long while, I tried to hide my symptoms from my family because I didn't want anyone to feel sorry for me nor to treat me any differently than they normally would.  However, as the MS grew harder to hide, confession was unavoidable.  That was last year.  Now, I am starting to take my first steps toward her approach:

"Despite some of the reactions, I continued talking about my diagnosis because I was happy that I was educating people.  I was still finding that people didn't know much about MS or had heard of it but did not know exactly what it was.  Others had completely wrong ideas about the disease.  Several thought it was fatal. Others thought that I would not be able to walk for much longer. 

"I saw such fear in people's eyes sometimes.  I also saw sympathy and pity.  That upset me the most.  From the days of my diagnosis, I did not want anyone to feel pity for me.  I felt that I had a lot going for me and that a stupid little disease like MS was not going to make me any less magnificent.  It was not going to make me less talented, less creative, less intelligent, or less anything."

I like how much this author describes the various medical treatments she's gone through.  One of them, I'd never heard of -- hyperbaric oxygen therapy.  As she describes:

"Basically, it is a treatment that simulates deep-sea diving.  You go through all the motions of diving, with mask on and all, but you are not in water.  The oxygen that you breathe through the mask is pure oxygen.  When you breathe pure oxygen in a pressurised environment, the oxygen enriches your cells, at a profound rate."  

It sounds like it helped her and others with MS.  Interesting.  I'll have to look into that a little more.  Of course, the whole time I was reading about her experiences in the "chamber," a song was playing in my head -- "We all live in the yellow submarine, the yellow submarine, the yellow submarine..."

After her first therapy session, though, she said something I've thought often in my life:

"I walked out without signing up for another session.  I liked the actual diving very much, not to mention the after-effects, but I could not shake the guilty feeling.  I felt like people in wheelchairs or walking with sticks would not want to see someone with the same disease walking without assistance.  I thought I would make them feel bad.  I was not sure if I would ever go back."

When I tweet about our walks, I often feel guilty when thinking of those reading who cannot walk like that.  Yet, I know I'm motivated to keep moving when I see others with MS posting about their activity.  Such an odd situation.  I don't want to make anyone feel badly they cannot do something I'm doing, yet I want to motivate others and myself to do as much as they can do.

I suspect others feel similarly, to many of the above quotations.  We may all have a different set of symptoms (why this is called the "Snowflake Disease"), but we have a kinship in our struggles to stay positive, active, and fighting!