The Power of ... Empowerment

My boss frequently gives me books to read on leadership and working with customers - which is typical when you do anything even remotely sales-related.  While I normally scoff at such things, as I feel many of them teach you to be manipulative instead of genuine, this latest one is much different.

This book is called, "The Power of TED," and it reads like a novel instead of a self-help.  It's a physically small book, but one that has already hit me deeply.

I have mentioned before how I feel about fellow MSers who "gripe" about their disease, for lack of a better word.  I'm not talking about those who genuinely struggle with new things, have physical disabilities, or even those who are having a bad day.  Not that.  I mean those who are in full remission and still have the nerve to say that their MS disables them every day, or speak as if there isn't such a thing as  "good day" in the mix.

I know this makes me sound like a bad guy, but let me explain further.

I am fully aware, absolutely, that MS is a constant companion of those who struggle with it.  You can't make the scars in your brain go away any more than you can make stretch marks disappear.  They're always there, even if they are less visible.  They're always going to affect you somehow, either in how you budget your time and your energy, or in how you physically feel.  But my comment is less about the realities of living with this disease, and more about how our attitudes effect its manifestation.

This book has reminded me of a principle that I used to recall daily.  Making oneself a victim every day is not a desirable trait, neither in said victim nor their loved ones.  It is an ugly place to put oneself.  And while some victimization is genuine (i.e., physical and emotional abuse), presumed victimization is the prevalent sort that people "get tired of," including ourselves.  And it can make us feel ugly to admit that we do it to ourselves, and not the other way around.

For example, in the case of my own MS.  I currently, right now, still have active optic neuritis in my right eye that makes it difficult to see.  I learned today that I get carsick more than I used to because of it.  It affects my ability to balance myself at night in the dark, which is important at 8 months pregnant with near hourly bathroom breaks!  It affects my ability to see details and color accurately.  I cannot read well on a screen, troublesome for a person with two novels in the works.  It would be easy to pull out this "trump card" of sorts when listening to someone complain about something innocuous, like traffic or the weather.  It would be easy for me to stop creating altogether.  It would be easy to say "I can't do it," blame my MS, and not have anything positive to say.

Yet, I choose daily not to be a victim of my circumstance.

Circumstances don't have personalities.  They cannot victimize you personally.  I saw a twitter poster a few weeks ago that essentially mocked my constant motto of MS - "I have my disease, it does not have me."  These folks were sending messages back and forth, "Gee it must be nice to not be owned by your MS, because it kicks my ass daily."  I get that, I truly do.  I could go off on a laundry list of all the things that my MS has done to piss me off just today.  But I won't, because I would be giving it permission to take over my day if I did that.  I would be giving it the power.  Surrendering our psyche to the "inevitable circumstances" around us just because we "lack control of it," doesn't mean we can't control how we react or view the problem.

I have a friend who lost her husband last year.  Even before this happened, she was somewhat of a classic "Debbie Downer."  What would normally be considered a tiny inconvenience turned into a huge disappointment; heaven forbid she have a long commute, or it rain too much.  She had no tolerance for disagreement or the unexpected.  I will never forget the first time she truly got under my skin with this routine; it was a great day, and I came into our office declaring how amazing it was that we had the privilege to help people at our job all day long.  She responded, "Yeah, until someone throws their hearing aid at you."

That very response was a choice that she made - a choice to focus on the negative instead of seeing the great things that could be done daily.  When her husband did pass away, these same traits got all the more worse.  I exercised patience with her as much as I could.  We had to choose a depression screening tool for our patients, and she lamented over how she would quickly fail the screen: "Not getting sleep?  Easy, I don't sleep anymore.  Losing interest in things you once loved?  Of course, I'm alone, what's there to look forward to."  This was over a year after he passed - I am NOT suggesting that mourning has a time frame, quite the contrary - but how much misery was she causing herself by telling herself every day that nothing could get better?  Every encouraging word I offered was countered by a dramatic declaration.

I recently began a "Positivity Blog," where I describe four things about my day and myself that help me grow my self esteem.  It's a form of cognitive behavioral therapy, as my psychologist husband has pointed out that I have a self-destructive inner monologue.  This isn't something I express in how I act around others, but only in how I critique myself and my projects.  When I mentioned it to this coworker, she said, "Mine would be blank."  This is another choice.  She looked at the schedule of patients for this week, and had something negative to say about every single one of those patients.

People have a tendency to perform how you expect them to perform.  Instead of choosing to view those patients as opportunities to prove herself and her skills to make them happy and meet their needs, she is stunting her abilities by setting herself up for failure.

We make choices daily, to be victims of our circumstance or creators of the positive.  I am choosing to be a creator of the positive.  I am choosing to have more control over how I feel about my MS than to let it take control of me.  I cannot choose the course that it will take, I cannot choose how my baby will act when she's born, I cannot control my mother's words to me.  But I can control what I do about it, how I prepare myself for these problems, and how I handle negative experiences.

I hope my rambling made sense, and that I don't seem like too much of a devil's advocate.  But the path to healing isn't easy, it isn't pleasant.  We have to admit that we are at fault for some things, because we can't blame everyone else and be innocent all the time.  May you all choose the path of creation, not victimization.

Love, MSloan

ChatMS - 10/26/2015

Tonight's ChatMS was all about intimacy.  I appreciate all of your support and participation, feel free to comment or copy/paste for your own blogs!

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Q1: On a scale of 1 to 5, how comfortable do you feel talking about Intimacy? 

I'm married and generally very open.  I rate at a 5!

Q2: Many people have different definitions of intimacy. What does it mean to you?  

Intimacy to me means the ability to open up to a person in more than a casual or surface manner.  It is not always sexual or romantic; I have few intimate relationships in my life, I am an open person but I am not easily trusting after one of my most precious relationships fell apart.  It has new meaning to me now, especially in regards to MS, because it can and will impact every single relationship one has.

Q3: MS can have effects on Intimacy. Have you noticed changes since your diagnosis?

Yes - a few.  I wrote a blog post about this earlier last week; it's difficult to feel welcomed to discuss my MS by people at work or church because they don't understand it.  I had some more sexual dysfunctions as well, which I will address in later questions.

Q4: Have you and your partner discussed how MS can affect Intimacy?

 Yes - we have had to have tough conversations about what this means for me, and how things might change in our relationship.  We had to really buckle down and decide if we wanted to have children.  It meant I had to breach the subject with a few friends - and I mean few.  Many of the people I consider to be 'friends' still don't know I have MS - not that it matters, but I feel it's an important part of understanding why I make certain decisions.

Q5: MSers have more problems with ‘sex’ than a person who doesn’t have MS. Do you struggle with this? 

Yes and no - I noticed a big drop in my libido shortly after being diagnosed, and when you are numb in areas from the waist down, it absolutely affects your ability to enjoy sex.  I was depressed and very tired - it never felt like a good time, and this came right after a period where my libido was at an all-time high and our sex life was excellent; it was quite a setback.

Q6: ONLY if you are comfortable, what MS related symptoms have you noticed during times of physical intimacy?

 The biggest one was an effect on my orgasms.  For me, a climax affects my entire body - it isn't just localized in one 'place.'  Instead, I can feel contraction and blood rushing all through my legs and torso, which enhances the experience.  When I couldn't feel my leg or part of me pelvis, it really impacted my libido and my ability to enjoy sex when we had it.  I was terrified that it would ruin our intimate time together forever.  Thankfully, that ended.  Now the only thing affecting our sex life is the weird experience of pregnancy.
I swear, I need to write a book - Pregnancy Sex: The Final Frontier.

Q7: How do you deal with the symptoms of MS and Intimacy? Have you talked to your neuro about it?

 Just like anything in a relationship, communication is key.  I have to be honest with my husband about do and do not feel ready for.  I didn't discuss my sex drive with my neurologist then, but she was very perceptive and put me on anti-depressants.  It was a lifesaver, though my Lexapro negatively impacted my climaxes as well for a while.

It's so refreshing to know that this is not an isolated problem, especially because it is likely addressed by some physicians as being a side effect of depression and nothing else.  Don't let what your physician tells you be the only thing you learn - do research, ask others, be accountable for your healthcare!

Keep the conversation going!  Participate weekly in #ChatMS on Twitter and FB!
MSloan

#ChatMS

I just participated in my first Twitter #ChatMS - it was excellent!  I feel so much more connected to the blogosphere/intersphere of people who have MS across the country and around the world.  It's so great getting to know all of you as we share in this journey together.

I haven't had much reason to post lately because my MS is essentially on hiatus while I go through pregnancy - - SO why not post things about pregnancy?  WHY NOT, I SAY!

So the next post will be the progress on Squishy thus far.  Love to all! And thank you for participating, you make me brave!
Miss Sloan :)

twitter.com/revelwoman