My Strong Tower

Last May, what was meant to be a regular appointment, turned out to be not at all what I expected for my life.  Instead, I was admitted to Children’s Hospital.  The next day I asked the doctor when I would be able to go home.  He said, “We are still working on that.  What I didn’t realize was that they were thinking of different plans.  It was the following day, I was told that I would not be returning home, but that I would be admitted into a nursing home.  As the weeks started to go by, there was one day I was sitting in the wheelchair.  I faced my mom and told her I was tired of living “brave”.  In essence, I think I was telling her that I was tired of change as since January my body had been through a whirlwind of changes.

I remembered once being told that wherever there was a nerve, there could be a tumor.  That is just how this disease works.  Whether the tumor causes a problem or not, the ones that do start the “battle of the mind” game.  When the tumors do start causing a problem, you never know how slow or fast a tumor will grow.  Thinking back, I did enjoy a really great childhood all the way through high school and college years with typical ups and downs of the disease.  I went through pain-spasms and muscle atrophy as this is what happens as the tumors start to squeeze the nerves and the message to the brain is cut off.  It wasn’t until we moved here that things started to go down really fast.  It wasn’t until my full deafness and never recovering from my right eye surgery, when I told Marcia that January that I was opting out of my left eye surgery.  I knew things would change, but I did not realize how fast things would change!  I enjoyed last Spring until I was in Children’s Hospital.  When I first moved into the nursing home, my body was still doing about the “same” as when I left Children’s Hospital.  It did not take very long for more changes to increase rapidly.  I was doing PT and OT and I could still communicate by using a green marker board with a black marker.  All that shifted when I went fully blind and had to stop PT and OT.

Fast forward to today, I am now in full dependency on the aides and nurses.  Although, I no longer go to Children’s Hospital for MRIs and Dr. Appointments.  I know that the tumors are obviously “up to something”.  The whole left side of my face is mostly the problem.  I also get headaches where my left optic nerve is and I cringe every time I get eye drops in that eye.  Even if they are being as a careful as they can.  One touch at the eye will give me the greatest pain.  Now, the top of my mouth and whole left side of my mouth and face is completely numb.  My jaw has even shifted to the right and a lisp has developed and gotten worse.  I often bite my tongue.  I only chew on my right side.  Most of the time, food will get stuck at the top of my mouth when I try to swallow.  I try to get it off the top of my mouth.  Even when I do swallow it, sometimes my throat will reject food and it will come back up or sometimes it just gets stuck and stays there.  I have to take a drink.  When taking a drink, if someone isn’t holding my lips closed on the left to seal them, I cannot get the drink out of the straw.  It doesn’t matter what I’m eating, whether it is grounded or yogurt, or even trying to take my medicines which are crushed and put in  apple sauce or pudding.  This is becoming more of a problem.  From there, you can go down my body where everything from my hands, legs and feet that I had worked so hard to strengthen and keep moving—I feel is lost.  Unless someone is holding my hand to keep my grip on my toothbrush, utensils or paint brush.  I’m at the point where, besides gripping Teddy and somewhat pushing my nurses button, I feel useless.  I’m also at the point, where using the bathroom, I have changed so much that somedays, I find it is so frustrating and humiliating . . . it can put me to tears.

As my physical body fights these changes in the mind, there is also another part of my mind that just “thinks”.  When my mind is not telling my body how to use the bathroom or swallow my food—it’s just “normal” thinking for me.  I can think of many things, but in thinking—it’s hard not to think of what comes next.  Although I am at true and total peace, it doesn’t mean that continuing on won’t bring more pain, frustrations and humiliating times.  But also, as my body continues to weaken and decline, I’m finding that I am now having different thoughts about what may come next.  You see that is the problem of thinking in the “future” for me.  It is like blindness as it leaves me in full dependency of what God has planned for me.  However, now that those thoughts have come and gone through my head, in all honesty, I’m finding that I am not ready to let go.  It was last year, even before, I started to really decline in my health.  I was still at home and wanted to take a nap.  I had just started needing help using the bathroom, so as mom did that and helped me into bed, she left the room.  I started to sniffle, maybe too loud, and mom came back in the room.  I told her I wasn’t ready to let go of seeing my family’s faces or being with them.  And, I think, right now that is what I’m facing (again) even though I cannot see my family’s faces and have forgotten what they look like, except from old pictures in my mind, part of me just wants to be here with them.

Michael W. Smith has a song “Pray for me”.  In the second verse he says, “But I know that through it all, the hardest part of love is letting go, but there is a greater love that holds us, pray for me and I’ll pray for you.”  As I continue my journey, I should remember this that even though I love my family and friends so much, I love God even more . . . because God says He is continually with me.

In you, O Lord, do I take refuge;

    let me never be put to shame!

In your righteousness deliver me and rescue me;

    incline your ear to me, and save me!

Be to me a rock of refuge,

    to which I may continually come;

you have given the command to save me,

       for you are my rock and my fortress.

                                    Psalm 71:1-3

Strong Tower

As sung by Kutless

 

When I wander through the desert

And I’m longing for my home

All my dreams have gone astray

When I’m stranded in the valley

And I’m tired and all alone

It seems like I’ve lost my way

 

Chorus:

I go running to Your mountain

Where Your mercy sets me free

You are my strong tower, shelter over me

Beautiful and mighty everlasting King

You are my strong tower, fortress when I’m weak

Your name is true and holy

And Your face is all I see

 

In the middle of all my darkness

In the midst of all my fear

You’re my refuge and my hope

When the storm of life is raging

And the thunders all I hear

You speak softly to my soul

 

Chorus:

Now I’m running to Your mountain

Where Your mercy sets me free

You are my strong tower, shelter over me

Beautiful and mighty everlasting King

You are my strong tower, fortress when I’m weak

Your name is true and holy

And Your face is all I see

And Your face is all I see

Yeah, Your face is all I see

“Mind Art”

Painted by Mel

February 12, 2016