You’re Still Here

Words to a song I wrote when home sick with MS for a few weeks in the late 90’s. A much more “Christian”  song than the next one I wrote about the disease a few years later. Still, some good thoughts perhaps.

Seems those worship songs of yesterday
Rarely moved my heart or eyes your way
Too busy with things and making plans
Never made the time to care

Now days roll by where it’s all I got
Just to make my coffee and pour a cup
Before I stumble to bed, turn out the light
Pray for strength for what comes next

But times like these when I can’t do much,  that’s when you come around and fill my cup
It’s then I find these simple songs mean somethin’ after all
Cuz you’re still here
My all in all in all in all in all

In those foolish days of health it seems
That I locked you out of all my dreams
My highest regards, deepest respect
Never felt to me like love

So I thank you now that my worst fears have left my mind and joined me here
Where they’re starting to look a little bit like blessings from your hand


And I’ve seen you now like never before and you’re lovely
I’ve seen you now and I want some more, so just show me
Take my arms, and feet, and legs – and lips, and heart, and bones, and everything else

They’re yours anyway

Though you slay me, yet will I trust you
Though you slay me, yet will I trust you
Though you slay me, yet will I trust you
Though you slay me, yet will I trust you

Body image, vulnerability, and shame

Most fun I’ve ever had showering in front of a woman half my age: none. Awkward experience, but Mary Beth was a pro. I got my A in self-care. I was like “Seriously? You’re going to stand here while I shower? So you want the full monty?”

Funny how the body connects to the soul. In better days: Behold me! I am the god of sex, and thunder, and rock and roll!” Today: Please avert your eyes. I am weak and broken. If you must look, look with compassion, but not pity.”

Thankful today for a good woman, where I’ve never had to be ashamed of who I am physically, emotionally, spiritually, or otherwise, even as my vulnerabilities become more glaring.

Going home

Back to going home tomorrow. They were going to discharge me Wednesday morning at 10, without any PT or OT that day. What’s the point of just staying one more night? Christy is picking me up after work tomorrow evening, so tomorrow is my last day of PT/OT and I’m out of here. My feet are still incredibly numb but other areas have improved slightly to moderately (feeling in waist, across groin, bladder, butt, face, hands, arms, etc.).

I have become an intellectual expert at walking. I can tell you much of what it involves and have committed many walking principles to memory to avoid falling. Still, I can walk effectively only with a walker at this point. I know walking, but I no longer know it as I did just two weeks ago.  

Continue Reading »

Keeping your shoes on

Imagine if you could never kick off your shoes, if your feet just constantly felt that constriction of having tight shoes on. I can sit here right now in my stocking feet or even with shoes and socks completely off, and my feet feel as if they’ve been stuffed in tight workbooks all day.

No sermons. No spiritual angles. Just saying.

The Roller Coaster

Quite the roller coaster it has been here. I am going home on Tuesday, and so far have experienced only very minor recovery. My left foot is still completely numb up to the knee. My right foot is less numb and it’s just to the ankle. The left lateral side of my left leg is severely weakened as well, as well as the left quadriceps. All of this weakness and numbness obviously makes walking exceptionally difficult.

When I entered the hospital, I could barely walk with a walker. I have learned a lot and am now able to do that fairly well. I can still almost not walk at all without my walker, except very slowly and for short distances. Both balance and endurance on the left leg are quite bad. I have come a very long way in rehab, learning to live my life, avoid falling, and how to be as productive as possible given my substantial disabilities at this time.

None of this, of course, says anything about what is to come. I may yet recover fully. Or almost fully. Or slightly. Or not at all. There is no telling. Some recovery is perhaps more likely than none. Roller coaster.

The last few days have been hard.  

Continue Reading »