Can't Touch This

We build invisible walls around us to protect us from getting hurt, but if we have a wall up, we become disconnected from others and it's impossible to "touch" - to give or receive - a hug, a kiss, a pat, or hold someone's hand. Physical contact can convey so much more than mere words could ever express. God didn't create us to live in isolation or to be "contact-free". Go ahead...reach out and touch someone today.

( © Post by CJ Taylor ~ please do not copy)

Gordie Haverty August 28, 1953 ~ March 30, 2001

How ironic...or not...that I would have thought of HIM on this particular morning.  I posted my previous entry today without consciously remembering.  It wasn't until I read his sister, Angi's, post on facebook just a few moments ago that I realized - that today is the anniversary date of the passing of a man who was so kind, gentle, sweet, sensitive, funny, ornery, loving, generous, adventurous, brave, and forgiving, among other things.  He had one of the biggest hearts and greatest senses of humor of anyone I've ever met.  He was my husband's best friend since high school, the best man in our wedding, and someone we could always depend on to be there if we ever needed anything...anytime...anywhere.  He was definitely one-of-a-kind.

A part of him lives on in the hearts and lives of all who knew and loved him, and even those whom he never had an opportunity to meet, at least on this earth...his wonderful handsome grandsons.  Because he had surrendered his heart and life to the Lord, we shall see him again someday.  He is waiting for all of us with a great big smile and a hearty laugh, twinkling eyes, and arms wide open!

( © Post by CJ Taylor ~ please do not copy)

Oh No, Not the Board!

I knew.  Just as soon as I made the effort to get up out of the bed this morning.  I suspected it when I awoke to go to the bathroom and just change sleeping positions during the night.

What did I do yesterday?  I did not run 10 miles; I did not kickbox for an hour; I did not Zumba or dance for hours while watching "Dancing with the Stars" on tv last night. It was a fairly light day filled with routine activities like doing laundry,  washing dishes, and shopping for groceries.  That certainly doesn't explain why my body feels like this!

Yes, this is definitely a "Board" day.  I could reach into my imaginary box of signs that have one-word descriptive labels written on them and pull out the one that has "Board" written on it and hang it around my neck.  If my husband would see this word on me when he gets up this morning, he would immediately know the connotation and would not even have to ask how I am feeling.

I have to give credit to our dear departed friend, Gordie, for this particular label.  It comes from one of the answers he would give when asked "How are you today, Gordie?"  and he would say "I feel like I've been beat with a BOARD!"

( © Post and photo by CJ Taylor ~ please do not copy)

So, You Think I'm Avoiding You?

Sometimes avoiding interaction is just easier.  Sometimes it's downright necessary.

Because the MonSter seems to have permanently affected my ability to take in, integrate, interpret, and process the things I see, hear, read, and experience, it is almost impossible to have a "normal" conversation or interaction with anyone. Try thinking of it as an electrical device that is prone to "short-circuiting".   Because of where the MonSter has attacked specific areas in my brain, my response to your questions or comments might be awkwardly delayed.  Or quite often I might not be able to "find" the correct word that I want to say.  Or I might just give you that "blank" look because my brain is not currently able to keep up with what is being said.  You may think I'm not paying attention or I just don't care about the topic of conversation.  All of this usually leads to frustration on my part and impatience, hurt, or even anger on your part.

You think I'm shy, stuck up, or disinterested because I don't talk?  Truth is, much of the time I have a lot of  memory lapses, difficulty comprehending, speaking, getting words out, or simply following the conversation.  How can you help?  Understand that some days and some times are worse than others; give me a little extra time to "catch up" during the conversation; and don't try to rush my answers or finish my sentences for me.  Most importantly, please don't get angry, irritated, or impatient about something over which I have no control.

( © Post and photo by CJ Taylor ~ please do not copy)

The MonSter is Real!

Unlike a bad dream, it doesn't come only when I'm sleeping, it doesn't go away when daylight comes, and even when my mind is occupied with hundreds of other thoughts and I'm busy with the "stuff" of living, working, and trying to care for my family, it lurks about and, without warning, it attacks, disrupting my cognitive and physical functioning, oftentimes bringing everything to a sudden screeching halt.

The problems are real, the pain is real, the symptoms are real...even if you can't see them.  Unlike a common cold or minor injury, it doesn't happen and then get all better and go away.  The nerve pain that accompanies an attack is excruciating and unlike any other type of pain.  If you've ever had a bad toothache, just try to imagine that type of pain occurring in any other part of your body.  It can affect any body part or function at any time for any length of time.  The numbness, tingling, and weakness that often occur can mimic signs of a stroke and can be very frightening and debilitating.

I'm thankful that, at least for now, I have the relapsing-remitting type, where the MonSter attacks and one or more areas of cognitive and/or pyhsical functioning is affected for a period of time, then gradually resolves, although often not completely, so that I'm left with some residual pain or loss of function.  Some of the symptoms I've had include vision problems and eye pain, vertigo and imbalance, difficulty walking, confusion, disorientation, difficulty processing information, slowed thinking, difficulty with speech,  memory loss, numbness/tingling/weakness, burning sensations, spasms, reduced fine motor skills such as writing, unexplainable indescribable fatigue that can strike and suddenly render me immobile, pain - including what I describe as extreme "lightning bolt" type pain that takes my breath away and can make me collapse onto the floor.

Please understand, although altering lifestyle and making some changes can help, these cannot cure MS.  Rest is not a cure.  Less stress is not a cure.  More vitamins or supplements is not a cure.  Better weather is not a cure.  Currently there is no cure.  There are several treatments being used that seem to slow down the progression of the disease and/or reduce the severity of the attacks.  In my opinion, most of the treatments that are being used are experimental at best.

It is my hope that by writing about my own personal experiences, readers will have a better understanding of MS, and some might also better understand me as a person and perhaps have just a little more tolerance and compassion.  I would not wish this MonSter on anyone, but MS is no respecter of persons; it could choose you or one of your loved ones next.

( © Post and photo by CJ Taylor ~ please do not copy)