Sunday, October 8, 2017

Audible Walk

As he strums his guitar, chords and melodies headed nowhere, I realize that my listening pleasure is based on hearing his "audible walk."

"Wanna take a walk?"




It's a pleasant time interpreting what he's seeing based on the tune he creates.  Just pleasant?  Yes, just as a walk meandering down a path is pleasant enough to take again and again.  After all, a path can only be well worn because travelers must take it or because they choose it continually.

Were I to examine the path/tune too closely, I might not be enamored with its details.  Instead, I trust it to take me somewhere or nowhere...the journey is truly the only destination.

"Ready to go back?"


"We should do this again."

"Yes, I'd like to do it everyday with you."

Saturday, October 7, 2017

But You Look So Good

It's the time of year when my friends are taking part in the BikeMS treks across the nation.  Although they love cycling, they sacrifice their bums to cycling 50+ miles to raise money in the hopes of a cure for MS (Multiple Sclerosis).  So a big shout out of love to Mary Beth and Yvette.  Your efforts are no small feat of support but a continual warm spot in my heart.

It's the only time of the year that I really urge people to look at this disease; if something interesting passes the news feed, I'll share it but mostly, I don't haul it into the daylight.  Because I just don't want my friends and family to really associate it too much with me.  Because the stories can be horrifying and sad and it seems needless to burden others with this chronic bitch that can't be cured.  It just rises up at the most inopportune moments and in comparison to other diseases I just feel damned lucky that the "S" I pulled out of the barrel was MS versus ALS.  I appreciate how lucky I am to have this auto-immune disease; it's not going to kill me but it will annoy the hell out of me and probably shorten my life...but so does lack of exercise and smoking!  Smiles...I exercise and don't smoke. 

In fact, after the initial shock upon diagnosis eleven years ago, I decided to make concerted efforts to keep the odds on my side.  Oftentimes, I receive private messages asking how this happened to me because the sender is experiencing odd symptoms themselves.  Yes, if you're reading this and was one of those MANY folks, I'm happy that I haven't heard back from a single one of you that you also have MS.  And that is the absolute best news.  Except some of you have told me that you've contracted some other auto-immune disorder and for that, I'm sorry.  It seems to be the "trending" ailment in the news with a lot of study going into WHY so many of us have bodies that fight themselves. 

MS means multiple scars and I have them on my nerves which sometimes makes me smile as I tell someone they're getting on my last nerve (rare because I'm kinda sorta nice) and I'm a jokester by nature.  So I have scars that show up on MRIs as bright little stars that twinkle back at me while they destroy the myelin or fatty tissue insulating my nerves.  After they've done their damage, they disappear except like just like in space, they evolve into black holes and that's bad.  That means my poor old gray matter will never again be able to use that pathway to tell my body to do something.  Fortunately, the brain is really good at finding alternate routes and if I participate in the process by being continually engaged in "brain active" pursuits, I can keep many trails open.  Trailblazer.  Yes, that's me.  Sigh.

Although I was diagnosed eleven years ago, MS was already insidiously working on me.  I just didn't know it and made excuses for the odd things that occurred.  I still smile remembering that first occurrence which might make me a saint or just stupid for laughing about it now.  I had arranged a night out with two friends, Mary Beth and Iva Lou, to see a musical.  They hadn't met before so in the driveway as the two came together, I blanked on their names...both of them and just said, "Hey, you two introduce yourselves."  They didn't know that they were also re-introducing themselves to me.  I was rattled the rest of the evening but put it away as evidence that I must be over tired.  And I was always tired, a hallmark of MS but also of young mothers with busy lives keeping their families organized and happy, etc. etc.  I have a name for that strange incident now and it's become a real ass of an annoyance in my life.  It's called Name Aphasia in the MS world but I have a few other of those aphasias popping up now.  FYI if you want to explore it.  Yes, it still rattles me as in the first time I forgot the names of my children or dear friends or any of the wonderful NAMES that I never want to forget.  And NO, you don't have this type of aphasia even if you do sometimes forget someone's name.  It's a chronic issue and I laugh it off in public as me being "menopausal" or "old" get the drift. 

I'm not a young mother trying to keep everything humming along but exhaustion is still my companion.  And NO, you may be tired due to your life or your own ailment but MS tired is truly different.  In the early years, I could nap it away, caffeine it away, just fight through it.  Now, my body steps in and starts making parts of me numb if I don't stop to rest.  That's kind of hilarious at times such as when I'm exercising and my knee just decides to stop listening.  Or, regular stress and a bad angle can make body parts just turn off.  My dentist has to prop my chair up periodically so my arms wake up which is annoying because really, that's when I want my mouth to go numb.  Again, I try to laugh these instances away but the more they appear, the more I fret and often have to push myself into the world; I know how easy it is to convince oneself that "not doing" is the better option.

So I keep doing.  A year ago, I took a fabulous trip to Australia and southern California.  It was so wonderful and EXHAUSTING.  My system took a hit for a few weeks afterward but it's always worth it.  The key advice I was given by a counselor once:  "If you want to keep moving...then you have to move."  It's good advice for everyone.  Stand up and move even if it's a shuffle for your body or your mind.

I've opened up about this because I want to put a familiar face to MS.  Will it make you donate to an auto-immune cause?  Maybe.  Will it make you reassess your own health?  Hopefully and if you need to make positive changes, please do so because even if you aren't having any issues now, one day you are going to have to struggle against something.  Health is like that...fleeting in its instances of good and bad.  Will this cause you to reconsider how you treat your friends with an ailment?  Let's hope not until you have a conversation with them as in how they might want a change.  They may not.  I know I like how all my friends and family deal with me as an MS-er.  They laugh and sometimes cry and still want to keep hanging out with forgetful me. 

It's the strangers who say things like, "But you look so good" that give me pause or "I forget names all the time" or "I'm tired all the time, too" as if they might be rationalizing what is going on with me....  It's a defense mechanism because no one wants to see others suffering and we want to play down symptoms as being normal.  MS isn't normal.  But I smile and go on and no longer try to explain why it's different.  Instead, I've written this in the hopes that when any of you see the cycling warriors at BikeMS on the roadways, in the parks or near your communities that you will at least stop and cheer them on.  They're hitting the pavement for your friend and perhaps for someone even closer to you because sadly, auto-immune disorders are growing in their prevalence, not going away. 

And we want it go away.  Trust me.  Because "I look so good" by fighting against this daily for eleven years....

Thursday, December 1, 2016


My body and heart began aching in November.  It seems that a month centered around giving thanks also has given much pain.

Like a daisy bobbing its head above the weeds, I've waved in the wind and turned my face upwards.  But the weeds are choking me now and I find my sunny nature hardening.

Physically, excising one's old lymphocytes in the hopes for better ones has been exhausting and I know that is affecting my disposition.  But before that, I watched my country stab itself and its democraZy directly in the eye and elect a demagogue.  Adding pain to the wound was the acknowledgement that far too many of my friends, family, and fellow citizens are incredibly selfish.

November finished itself with the anniversary of a dear one's death and anew, the death of another for which I could offer no comfort...can't fly until those stupid lymphocytes regrow to protect me from the germs of the masses.

Hardened.  How can flowers grow in dry soil beset with so many weeds?  Wilted.

Wednesday, November 30, 2016

Hatefulness Hanging in the Wash

Because of my unexpected health crisis, I find myself trolling the internet far more than usual.  And it's not pretty.

Now that we've flung open the windows to our personal bias, we're looking at everyone's stained laundry and cringing.  It's being hung out to dry in social media and it's shocking.

Ignorance is more cool than intelligence.  Yes, that means I've also been ignorant.  I've disregarded the flurry of Tweets, FB posts, and Instagram pics that are based on pure propaganda from family and friends.  I've told myself over and over again, everyone has a right to their own opinion.

And that is the crux of it.  The hatred and untruths that I see spewed aren't coming from well thought out opinions.  They're coming in the forms of  mindless re-tweets, FB sharing, and "like"s for memes that offer up another person's opinion.

What has happened to make people so lazy...or maybe they're just dazed?  Has fact-checking become too inconvenient or is it too painful?  We tend to see what we want to see and use our personal bias to hide from the rest.  So I'm guilty.  I've chosen to blind myself to the hateful rhetoric that's being vomited from people that I thought I knew.  It's disheartening and it goes beyond politics now.  It's the cutting comments toward another's religion, race, sexual preference and nationality and the passive-aggressive flaunts that say "there is only one way and it's my way" that shock me the most.  

I used to ponder why my ancestors would leave their home countries?  In my imagination, I see what they faced from an historical perspective:  Huguenots fleeing a spiteful king, the Dutch seeking greater financial opportunity, the Irish becoming indentured servants leaving behind starvation, and the Scandinavians...they, being the conquerors.

Instead, I'm pondering if they couldn't bear watching their family and friends turn into strangers when confronted with the stress of a changing society.  

We don't have to move to a different country.  We can move to a different city, state, or region.  We can limit our contact so that those old memories are more prominent than the ugly truths thrown at us in the guise of social media.  

We can also close the windows and pull in our stained and dirty laundry.  

Tuesday, April 26, 2016

Opened Hand Love

Opened Hand Love

When I feel weak
                I want to run from you
When I feel weak
                I try to forget us
When I feel weak
                I hide in front of you
                I face my fear
Because you strengthen me
                I remember our love
Because you wait for me
                I do not fly
Because your hand is open
                That is love
                That is us
                And me is we
                I am you

                We are free
                In open love

Tuesday, February 2, 2016

I Hope My Children Call Me Stupid One Day

Listening to the presidential candidates after the Iowa Caucus reminded me of my youthful folly supporting past inadequate nominees.  It reminded me that I had heard their rallying cries, had seen their enthusiasm and been crushed by their losses or indiscretions.

I want my young adult children to be politically active (at least knowledgeable) because I know that ALL politics are local and crap eventually rolls downhill wherever one stands.  My advice, "Have a voice in who delivers the crap and perhaps all of it won't land on you!"  Some believe that corruption, inaction, and idiocy go hand in hand with government yet without having some trust in it, this country would disintegrate.  Use that four letter word and VOTE every time it is offered.

Revolutions are messy, usually deadly, and most fall flat.  Arab spring?  It ended up flooding the region with false hopes.  But will the believers stop?  No.  They may be suppressed for a while but their children will observe, learn, and find their own protest strategy.  Energy for freedom always resurfaces. For the sake of humanity, may that generation of children call their parents "stupid" when their own efforts succeed.  May those parents live long enough to accept it laughingly and say, "You're right!  We were stupid when we did it BUT we're happy you kept trying."

Knowing better.  We preach that if a habit goes on long enough, it takes longer to break.  As a country formed by revolt, a people emboldened to rise up again and again when suppressed, I hope my children call me stupid one day for some of my beliefs and actions.  That will mean they KNOW better.

A simple photo inspired my thoughts.  What a great idea!  It's a much better option to give fruit to a child versus a cookie in the grocery store if we're trying to teach them to live healthier.  To my future grandchildren, "Yea, we really used to let our kids eat stale cookies but now they only give fresh fruit!"  :-)

Free the Teachers!

In response to an article that a friend shared on FB, I simply had to rant!

How To Raise a Creative Child

This is EXACTLY what is wrong with standardized testing as a goal...teaching the "rules" over and over doesn't allow a child the space to develop other "rules" that may help mankind push forward to new thinking. How in the world can we expect our kids to be innovative if all we ask of them is to relearn old facts? Instead, letting them have information access via their libraries, etc allows them to expand their thinking from others' creations and experiences. Teaching them how to "teach themselves" will let them delve into topics that may seem inconsequential to us but could change their young lives forever.
Yes, they should be taught reading, writing, arithmetic, civics, the arts but only to a point. Controversial? No, because generations before us were given these tools and did great things. To have access to the world's information via computers and ask kids to memorize miscellaneous facts about an obscure historical event, a rarely used mathematical formula, even my beloved poetry...ridiculous. Memorization is valuable because it can increase the synapses in developing brains...but why aren't we letting them memorize what they're passionate about?
Once they've mastered essential tasks, shouldn't we let them with their parents' input personalize their educational experience? How many "gifted" kids have languished in middle and high school because they can't pursue a passion. Once we have their trust, we can expose them to the intricacies of certain subjects. Engineering, more recent history, music beyond an instrument but via their laptops...if we let them, students will excel at something. And if they excel, they'll trust themselves to EXPLORE other topics that we can facilitate.
I truly sense that we're at a tipping point. Our educators want/need to follow their instincts and let children latch onto to their own talents. They ought to have space in their classrooms to guide these young minds and instead, they're mandated to make their students "learn" what others feel is important, pass tests that huge conglomerates create.
Those days are done. The public education system will continue to languish regardless of the money we pour into it if we follow this path. Home schooling would be hard for the masses...we pay taxes so that our children can come together and develop socially, create with others, and be guided by teachers to discover their own gifts.
Overhaul of the education system? Recreating the education wheel? No, it could be as simple as it once was...teaching students essential skills and giving them tools to hone their own skills. Vocational school? Yes. Technical schools? Yes. Artistic endeavors? Yes. Under one roof? Yes.
Standardized testing? Occasionally to make sure kids leave with the life skills of reading, writing, and calculating what they need including their own finances and civic responsibility so that they understand how the government that works for THEM should be working together.
Sorry, not sorry for the long rant.... I had teachers who were allowed to guide me toward self expression. And what a good job they did!!