On Maggie’s Pond

I’m sitting here noticing that I need to clean my keyboard.  I can do that!  I focus on what I can do and not on what I can’t do.  If I sat around bemoaning all the things that I can’t do, just give me a shovel so that I can dig a hole six feet deep that I can crawl into.  Only problem would be is how would I get the dirt filled up after I’m in the hole.  That I can’t do.

Living with Multiple Sclerosis is not a death sentence.  It is not something to despair over.  It can lead to a shorter life depending on the type of MS one has, and actually; it may lead to a shorter life for those with other variables of MS, but not by much.

What is significant about MS/Multiple Sclerosis, is all the things we can’t do as time goes by.  You don’t get a diagnosis of MS and all of a sudden you are bedridden or significantly impacted in an obvious way.  Many people have MS and still work.  Many people, inclusive of those I know; you would never be able to tell they have the disease.  Many people, including myself, have advanced into severity but still go on taking care of the house and other activities like yard work, etc.

Let me show you an example.

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I started this pond last year.  My husband dug out the slate for me and put them in piles around the hole that I dug.  My husband helped define the hole for me.

This was my baby.  It was something I wanted to do on my own so that I could feel a sense of accomplishment.  It was something I could do.  It took me nearly two years to do it, but I did it.  I carried each one of those rocks from one part of our very large yard to the pond.  Along the way, there were things I couldn’t do, and I gladly turned it over to my husband.  Although he was very concerned about my falling, which I did often, he left me alone when I wanted to do it alone.  He did put his foot down a few times and insisted I come into the house but he balanced his concern with my determination to do this.

It wasn’t easy.  It took forever and many small steps to carry stones.  I couldn’t use a big cart so I piled rocks into my shirt and carried them that way across the yard.  I averaged about three trips in an hour and the rest of the time, I laid the rocks into position.  I still have a ton of rocks to go, but at least it looks like a pond.

There were many falls, one where I had to lay there a couple of hours before help came along.  It was okay.  I turned over on my back, watched the clouds and made up a melody in my head.  When I was asked how long I had been laying there, I white lied.  What would be the point in worrying anyone when I was hurting?  The hurt did not come from the fall but from my legs, which started last year.

At that time I thought that perhaps my legs hurt because I wasn’t doing enough on my legs.  I wanted to work them out.  It didn’t work.

I focused not on building the pond, but on picking up a rock, putting it in my shirt, then picking up the next rock, and so forth.  Then I focused on the long walk back to the pond, or at least it seemed like a couple of miles.

The pond was the ultimate goal but the pond gets built by a lot of small steps.  I focused on those small steps and broke those small steps even further.  I landed up with mini steps.  Those I could do even if it took me all day to do what someone else could do in one hour.

This past weekend, I was like a child excited about going to a candy store.  We went to the pond store where I purchased six Koi fish.  I tried fish last year, but the pond’s habitat wasn’t mature enough.  I waited a lot longer before I finally deemed the pond habitable for fish.

My Take on This

Multiple Sclerosis is a disease that when you first hear the diagnosis your head spins with envisioning the changes that will happen in your life.  Yes, they are disturbing and yes, it seems calamitous.  It leads, for many of us, to debilitating lifestyle changes…gradually unless you Progressive MS.

I’ve had MS for 30 years, if not longer.  I still work around the house and in my yard.  I still walk with a cane or walker.  I am using my wheelchair a lot more frequently these days.  I have more than likely moved into progressive but I’m not asking if I have.  I don’t care to know.  It’s enough knowing that I have Congestive Heart Failure now.  That is something to worry about.  I’m trying not to.  The prognosis for that is about five to ten years, but my internist said he knows of some who have lived longer.

If one thing doesn’t get you, something else will.  It’s the nature of life.  We all die.  

It’s how we live that’s important.  It’s what we leave behind that counts.  We live on with the memories we gift people.  I concentrate on quality not quantity.  I concentrate on embracing the difficulties of the day not on defending myself from those difficulties.

Multiple Sclerosis is not a death sentence.  It is just one of those incredibly difficult and painful things that some of us are burdened with.  

I want to leave this blog behind as my gift to the MS world.  It is concise, brutally honest, happy, sad, uplifting, and depressing.  It is the whole of what MS is in “my” life.  It’s different for everyone.  In the long run, I want readers to feel that they have gained a lot of information (not the technical stuff), about what life is for one person with MS.  

My motto is “MS does not define me.  I define what MS is in my life.”

 

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You And I In Cyberspace

cyberPeople like you and I, who have an autoimmune disease such as Multiple Sclerosis, oftentimes had no outlet or venue to speak out the rambling mumbo jumbo of thoughts that tried to pass through our broken synaptic gaps.  In other words, we had no one to talk to because put simply, people get tired of hearing about our disease or any disease.  As a matter of fact, people (not all) prefer not to dwell on the not so pretty side of life.  Of course, there are those, more than I like, who do thrive on the negatives in life and are so into it, that when you try to talk about your problems, they will interrupt you to tell you about theirs.  Even in this situation, you are still left with no one to talk to.

With the advent of the Internet and blogging, a whole new world opened up to us.  Grant you, it is a rather shallow world because there still is no interaction, but that is almost preferable because you don’t have anyone interrupting you.  You also are not dealing with the sense that the other person you are speaking to is tired of the subject.  Instead, you have people reading your blog because they are interested in the subject.

You sit quietly at your desk or wherever, and throw out your thoughts to a captive audience who are sitting somewhere out there and are actively reading all about you.  They have stepped into your corner of the world and are now peaking inside the windows of your home.  You know they are out there but you don’t know when they will show up.  You can’t ready the house for company.  They have to accept you as you are.

Right now, I’m sitting in my nightgown.  Sure it’s almost noon here, but I have nowhere to go and no reason to get dressed.  Do I care?  Do you care?  No.  As long as I’m typing and you are reading, both parties are content.  Do I care what you are wearing or the environment in which you sit while you read?  No.  It works both ways.  You are looking for something to read and I am looking for an audience.

Am I?

cyberspace_feeling_by_ophelias_overdoseNo.  Now that I think about it, I am not looking for an audience.  So why do I blog?  I’m a writer.  I’m also a composer of music and musician.  Add to that, I’m an artist as well.  I don’t do any of these things for an audience first.  I do them because I am compelled to do them.  I was born to do these things.  Ultimately yes, it would be great to have an audience.   Your work cries for an audience, but it is the “work” that cries for an audience.  You can’t help what you do.  You just do it.  The work languishes on your computer or on a canvas sadly collecting dust, chomping at the bit to be displayed, heard or read.

All that I am and all that I do is of a solitary nature.  I did not choose this, it chose me.  Unfortunately, my personality is completely opposite of someone you would picture doing these things.  I am an extrovert.  I seek real people.  No offense to you and your warm bodies.  I do appreciate you more than you know.  However, wouldn’t it be nicer if you were sitting here with me and we having some coffee and chatting?

Nope, that wouldn’t work, would it?  We would be back to the beginning of this blog where one or the other of us would become unsettled in the conversation.

This disease or any disease of this nature is incredibly difficult to deal with in that the mind is willing and active but the body is not.  What does this have to do with the topic I’ve been discussing?  Nothing.  It’s just a thought I had.

I am grateful for cyberspace and for all of you out there who wander into my space.  I am even more grateful for those of you who have chosen to check out my space every time I post.  This makes me feel warm and cozy.  I wish there were more of you.

Actually, this is a restart of my blog of nearly 10 years.  It’s a long story but the blog was lost and I didn’t have a backup of it.  It broke my heart and I cried for my best friend.  As usual, though, what did I do?  I started over.  Here we are, you and I, rebuilding my blog because you are an integral part of this blog.  You are also an integral part of my life and disease.

In the end, I prefer you out there and me in here.  It’s the safest and more satisfying place for both parties to be.  You can walk away from reading anytime you want to and I won’t get hurt because I won’t know that you got bored and left.  I can sit here in my nightgown not caring if you see me twitching and falling over to one side with my head dangling down to the right.  You can’t see me.

I just had my Botox injection and in a week or so, I won’t look so ridiculous.  I should take my meds now, the first avalanche of them and soon I will pass for halfway normal to get through my day.  That way I can put on my smile and most people will think, “I can’t believe she has MS!”

digital-game-cyberspace-25330609For this 5 minutes of my life, I’m content to sit here in Cyberspace with you at the center of my world.