Thursday, March 10, 2011

Carnival of MS Bloggers #83

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

What Does MS Equal To You?

By Mary K. Mennenga

Guilt as an emotion is what
People use to get what they want
The only way it's able to work is if you buy into it
Honestly only you can make yourself feel guilty
Of course people will use words to reinforce your interpretation
Of what they've said to help you in feeling guilty
It's more about your interpretation of what was said
Take great care whenever buying into guilt
Because if guilt is the reason behind your actions
Your actions will have little meaning
Because it's become something you have to do
Instead of what you want to do

By Lisa Emrich at Brass and Ivory

MS = a twisted roller coaster, spiraling and without brakes.

I can’t recall the last “real” roller coaster I rode.  Honestly, I’m trying to rack my brain.  Was it during a visit to Disney World in 1985?  Or could it have been in a car driven by a speed demon? (That would be a figurative roller coaster, of course.)

During one ride, the anticipation and excitement about being strapped into a seat and allowing your body to be whirled through the air is intoxicating.  During the other ride, eyes are closed, feet are trying to push the imaginary brake pedal in the passenger seat, and the adrenaline rush is exhausting rather than exhilarating.  (Can you tell I have vivid memories of a car ride which scared the living daylights outta me?)

Living with multiple sclerosis is a bit like a roller coaster ride.  Many different and ever changing roller coaster rides, in fact.

When first diagnosed, I think that the roller coaster is ridden in total darkness.  You can’t see what obstacles, loops, twists, or drops are to come.  The fear of the unknown can be overwhelming and you just want someone to turn the lights on.

When living with MS for a little time, you begin to see patterns which repeat.  You get to know your own roller coaster track.  If you have relapsing-remitting MS, this analogy may sound very familiar.  Perhaps each relapse is like a separate ride which eventually comes back to rest.  However each experience changes you a bit and you can never really go back to being a coaster ride “virgin.”

Dealing with life with MS can be an emotional roller coaster as well.  You may have learned about the “stages” of grief which can generally be applied to dealing with a new diagnosis - shock, denial, anger, bargaining, guilt, depression, detachment, acceptance.    Of course, no one has to go through these stages in any organized fashion.  There are no hard and fast rules. 
I have found each reminder that MS is a companion who will not leave sends me out on the roller coaster once more.  It doesn’t matter how many times I’ve ridden the ride, or how well I know that I will never truly fall from the rickety supports, or that I will once again learn how to live with the new post-ride me.  I still get strapped in for a bumpy ride complete with anger and tears, sadness and guilt, and finally resignation to the new normals of life with MS.

A third type of roller coaster which I envision is the one where you can see the rides of other travelers on this MS journey.  Your initial coaster may be like the gentle teacups which swirl in circles.  As you learn more about the disease, you may begin to see what types of rides others experience.  Maybe somebody else has graduated up to a wicked tower of a ride, complete with loopdy-loops and straight drops.  You know that you might be on that ride also at some point. 

It can be frightening simply knowing what others experience.  Knowing what you might experience.  Knowing what you have experienced and may again (or always).  This knowledge is a type of anticipation which no patient or medical professional wants to burden you with, however “knowledge is power.”  It seems better to know what the possibilities are rather than always riding with your eyes closed.  Right?

No matter what the ride entails.  Know that we do not have to ride alone.  Others have come to the amusement park with us.  Our friends, family, loved ones, caregivers.  And, honestly, we (those who live with MS) do not have exclusive access to the park.  People living with other chronic and acute diseases may be there as well.

In fact, life itself is like a roller coaster, never completely flat nor static.  We each move forward (whether we intend to or not) eventually.  Perhaps we have a bit of control over which ride to take, choosing to become the strongest and healthiest we can be, choosing to open our eyes and face the monster down, choosing to let another person take the seat next to us.  Choosing to never go this journey alone.

MS = a journey to destinations known and unknown

MS = a community of travelers who support each other

MS = the reason I am here, right now, reaching out to myself

by Tammy Malkowski from Pick Tammy's Brain
My hands shake as my words slur,
But it’s not what you think.
I trip and I sway,
Though I haven’t had a drink.

I could fall at any moment.
And this never leaves my mind
But I’m trying hard to manage
As I’m on this MS ride.

My legs look normal
But feel like rubber.
My arms look strong enough,
But melt like butter.

I have slept for hours,
But my eyes still droop.
I want to walk straight,
But my head loop-de-loops.

You think I’m paying attention,
But my mind has wandered away.
I want to speak clearly,
But I’m stuttering today.

I try to read your email,
But I am seeing double.
I want to come with you,
But walking gives me trouble.

I may need your patience
And your compassion too.
But never your pity
For all I have to do.

I need you to be kind.
And try to understand.
I’m living a new life
Doing the best that I can.

I am making an effort
To be someone who
Is making a difference
In my own life too.

Give me a chance
Be on my side
I am still me
Even with all the drama inside.

My body has changed
But my heart is the same.
I still have a beautiful life
Even when playing the MS game.

The thing I need the most
As you try to understand
Is the comfort and confidence
That I still have my friend.

by Tammy Malkowski (2/25/2011)

from Living! with MS by Denver Refashionista

Lately I have been feeling some creative inspiration again and I have been looking back at old poetry and journals I wrote at age 23. I found a couple of interesting things. Many things are the same and many are different. Many of the images in my writing are still the same. I still love to be dramatic, and I still am in love with the idea of love :)

I also see the way life has changed. Every day is not a drama. The hard days are not as hard. One of the benefits of age is that it lends perspective. There are still hard days but I guess now I know that the good also comes with the bad. While one day may be a trial, the pain passes quickly and great moments can follow right behind tough ones. Since this blog is "Living with MS!" let me state that I have found these observations to hold true after living almost three years with this diagnoses.

One observation I can share with the newly diagnosed (with relapsing remitting) is that relapses do have an end. Sometimes when you think that some function is irrecoverable, it comes back. It is also easy to get lost in the idea that it's all downhill from the time of diagnoses. Not true: the course of this disease is different for everyone.

My first year was the hardest physically and mentally. At age 34, I am in the best physical condition I have been in since about age 16. I practice yoga every day and physically, I can run circles around my 16 year old students. I have enough perspective on the disease at this point to know that this could also change at any time, but this knowledge is also a gift. When you truly face your mortality and realize that things could change at any time, it makes you value each day of health even more.

Joy is often about valuing what you have, not morning what you have lost or could lose.

This concludes the 83rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on March 24, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, March 22, 2011.

Thank you.

Comments for this post.


  1. Oh Lisa, How I totally see myself inside all of the words written within this blog... My husband, John, God bless him for all that he does - just doesn't understand my need to be independent as long as I can... He doesn't understand I it bothers me when he says he is sorry... For what? For me having MS? WHY? What could he have done to prevent it? Isn't all part of the human condition to contract illness, diseases or what have you? Was there something that he did to me to have cause me to contract MS? NO, it is all part of the human condition. He can not understand why I get so frustrated and aggravated at people or him when they say that they are "sorry" that I have MS... OMG, I swear IF one more person says that to me I am going to smack them across the face!!! It infuriates me when people pity me... Do not feel sorry for me, I do not feel sorry for myself!!! Why should anyone else feel sorry for me or pity me for having MS... It is only a disease, yeah a debilitating one, but still I am strong and a fighter - so do not pity me!!!

    I love my family dearly Lisa, truly I do... I appreciate everything they do for me... However, they try to do to much... Instead of letting me TRY to accomplish something or TRYING to get it done, they take it away from me... Or tell me to "Go sit down Mom, I will do it..." I know they are only trying to protect me and make my life easier, but LET ME DO FOR MYSELF... If I can't do it or I NEED HELP I will ask for it... Let me be as independent as I can for as long as I can... They worry because the MS has affected my hands and arms more so than my legs... I don't know why, but I am slowly loosing my ability to use my hands for holding things... I am afraid to use glass glasses for fear of dropping them... If I do use glass it has to have a handle, for obvious reasons... I can't stand for long periods of time - as the length of time to prepare one of MY dinners... So we have ordered a Scooter to make life more independent for me... But they do not understand why I get so frustrated when they try and take away my independence... I am MOM, I am supposed to do these things and it is hard for me to turn over the ropes... It is bad enough I have had to come to grips with the fact that I am never allowed to work again - as per doctor's orders... I am a worker - wasn't raised to sit around the house taking up space being a drain on society... At least that is how I feel as I had to apply for disability and SSI. Yes, I was able to get it... But I feel horrible about it. I don't like it! I would rather be working, not sitting on my butt at home doing nothing... This is the one thing I have not been able to get over and it is causing me a bit of depression I think... Of course it doesn't help it is winter either...

    Do others feel this way as well... Others who have had to file and receive SSI and Disability? I was fine with my diagnosis of MS, didn't phase me - I just asked where we went from there and what were my treatment options... I had already researched MS and knew what it was, so it didn't scare me... At the time, I was also a psychology major in college - a degree that never came to fruition... Not once I started getting worse... I too am blogging about my days with MS... I think it is very therapeutic and it gives us an outlet to share and help each other...

    Thanks Lisa!

  2. Jennifer,

    It is so very difficult to find a balance between family members wanting to help (or do everything for you) and maintaining as much independence (and control) as possible. Fortunately, I have people around me who seem to be able to "read" me and my needs almost better than I can.

    Talking with other MSers who are going through similar things helps so much in dealing with these balance in life challenges. Welcome to the MS blogging community. I hope that you find many people to read and interact with. I'll be reading your blog. ;)