The Power of Words

“The Power of Words”

Communication is important!

So important that it even comes with titles and educationally earned Degrees! Like Moderators, Therapists, Councilors, etc....

There is training to gain proper communication skills: Active Listening, Open End Questioning, Timing, Knowing Your Audience, etc....

Communication in the setting of MS and your Disease Management Team is highly recommended!

Yeah, yeah, yeah...I get it. It’s “important.” BUT, What about the setting of the real world? Most communication discussions, training, and recommendations seem to be in the setting of the house built with the white picket fence and flower garden without weeds. Where even the most difficult discussions can take place over tea.

Put the broom back, you can’t clean this one up

Through our own pain and frustration, we might snap unintentionally at someone who tried to do something for us. Because it turned out not to be to our liking or how we would have done it ourselves, if we were able.

Now we have turned their good intentions into painful regret. And no matter how much we apologize or try to explain that it is not them, but ourselves and the situation of our own lack of ability that we are upset with, our apologies fall on deaf ears blocked by heartache. And they will forever carry with them our snapped words of displeasure and will relive them before helping again.

What a mess our words can make.

Biting our tongue with a smile

For those of us lucky enough to be blessed with a big-hearted caregiver, we have learned to smile through our pain for their sake. We see them. We know them. We appreciate them. Most of all...We love them. Yes, communication is important, but not as important as they are when it comes to letting them know fully about issues that we nor they can do anything about.

I find myself withholding painful responses like grunts, and saying ouch. Not verbally expressing my Trigeminal Neuralgia or extreme fatigue. Smiling up at my husband instead, as he gives me that concerned glance, is my choice.

Sometimes not communicating is more beneficial

Not wanting to hear him ask his inevitable, “You gotta go hospital?” Knowing that it is out of his love for me and his desperation to find a way to “fix” my symptoms. Not wanting to see his face turn from love to disappointment as I say, “No”, and he once again feels like he has failed to find a way to help me.

Sometimes not communicating is more beneficial, but they don’t teach that one under the proper skills.

Don’t ask me to lie

I have actually gotten to a point where I have said, “Don’t ask me how I am feeling unless you really want to know.”

I used to give the proper reply of, “Fine, thank you. How are you?” Then I realized that each time that I did that, it may have been polite to them but was a lie for me and a missed opportunity to educate someone about MS. So now I reply differently. Most of the time they will say that they really want to know. Even though they are just being polite in saying that, I take it and run with it until their body language says that they have had enough. If the next time I see them they don’t ask how I am feeling, they have at least learned enough to know that I don’t like lying.

Who’s keeping who on the edge of the circle?

We all have them. Family and or friends that are just out of reach, lingering on the edge of our circle.

How do we communicate with those who are not willing or are not yet ready to discuss our reality? Especially those whom we love but seem to deliberately avoid any conversations regarding our MS? How do we get them to understand that we want to spend time with them and go to all of the events and gatherings, but our symptoms prevent us if they don’t even want to know what our symptoms are? How do we make them see that we are not lazy or faking and that our MS symptoms might be invisible, but are real?

The answer may seem harsh...You can’t.

You can't always make others understand

If you are old enough to read this then you are probably old enough to remember the old saying, “You can lead a horse to water, but you can’t make him drink.” So, it must be them keeping themselves on the edge of our circle, right?

The other day, my cousin brought her fur babies over for a playdate with mine. Which I enjoyed thoroughly! Especially her little one, Lay Lay, who spent most of her time on my lap!
What does this have to do with those on the edge of our circle you might ask? Simply, that Lay Lay doesn’t need to understand my MS for me to enjoy her company. It’s my reality, not hers.

Using words that invite them into our circle

These people are our family and friends. Each with their own struggles and their own realities of which we can never fully understand. Our words have the power to invite and welcome them into our circle. (Although that choice to enter is still theirs.) It is our choice to use words like, "Hello, I love you, Let’s watch a movie at my house, etc," that can be received joyfully. Or we can try to force them to drink when they are not thirsty yet. With words of education on our reality. Which in turn may drive them further out of reach due to fear, guilt, denial, etc. Nonetheless, the opposite of what any of us want.

MS might take the center for us, yet it doesn’t have to be at the center of time spent together with others. If/when they are ready, somehow, they will let us know.

So...Who’s keeps who at the edge of the circle?

I guess that’s a question we each have to answer for ourselves.

Words are like a bullet

Once words have left our mouth, or have been seen in text, they have hit their mark. Directly or indirectly they have made a statement. It is my belief that there are no spoken or written words not meant to be heard or read...even if it is only by the doer that does.

And like a bullet released from its chamber, there is no taking it back. So as we take aim and before pulling back on that trigger, we should ask ourselves, “Will this hurt or help?” And, “If it hurts, is the gain worth the pain?” Even the death of the hunter’s kill can bring forth needed nutrition to a village.

Taking responsibility

We have all heard comments that bring to mind thoughts of responses that we only say in our own brains. Why?

The other person didn’t seem to think about what they were saying, why should I?

The oh so famous, “You look so good,” comment!

Why don’t we respond back with, “If you really cared about me, you would look beyond the exterior and see the ugly truth that is my daily pain and suffering! But noooo, you are too busy living your non-lazy, ever adventurous, super productive life to see or even try to understand my struggles!”

Why we don't respond with our true thoughts

Why we don’t respond with what our brain is thinking...
We don’t, because we know how powerful words can be.
We don’t, because we live with invisible symptoms that make us more empathetic to others' pain.
We don’t, because we know what a precious commodity energy is and we have learned to pick our battles wisely.
We don’t, because living with MS can be a very lonely place and we don’t want to see another person drift away from us.
We don’t, because we know that with every action there is a reaction, and we can only be responsible for our own.
We don’t, because we know that the power of words is meant to inspire, comfort, unite, educate, help, express love, bring joy and laughter, and encourage ourselves and others to be the best that we/they can be. Anything less than that is an abuse of its power and a wasted opportunity to manifest enlightenment.

The fighting spirit of an MS warrior

Yet, even after having said all that...I do have to admit, having the strength and fighting spirit of an MS Warrior and the stubbornness to take on injustice, preventing the thoughts from “accidentally-on-purpose” falling out of my mouth is not always easy.

Smile it’s just me!