Wednesday, September 1, 2010

Where Did August Go?

These past 30 days bring to mind the first eight weeks after bringing home baby: everyone is fussing over the cute new addition; while the parents paste on a fake grin and secretly dream of returning this 24/7 insatiable demanding bundle to its original owner. The obvious difference is that eventually the baby learns to laugh and smile, the whole Gerber baby thing, while my struggle to simply survive will not come to fruition in such a tangible way.
I fired my first home health physical therapist for his out of touch and falsely hopeful treatment goal that I learn to stand on one leg at the kitchen sink. The reality is I have fought for the past two years to give up standing. When you can sorta, kinda, teeter on the leg that has about 80% function to reach the Worcester sauce bottle, (while leaning over the pan of beef stroganoff bubbling on the stove) it is painfully difficult not to. I used to be an accomplished cook: now a few times a month I marshal the strength to dump a couple of cans of stuff into the crockpot with a package of seasoning mix created by a food scientist. Giving up my unsafe version of standing was the final door to shut in packing up and moving away from so many dreams, from the practical to the profound. So, who was this seemingly well-intentioned fool to suggest I replant blackberries in my backyard?
It is almost impossible for me to find one good thing in my current state of affairs, but, since I know I am supposed to: my hubbies steadfast support; my son flying home to check on me; the friends and family who've pitched in; the comfort of prayer and praise music; a home with water, lights, and electricity etc., etc.. Not one thing about my health makes the list. It is hard to embrace any of the gains I've made since this last exacerbation pushed me so much farther down the MS continuum and I haven't been able to return, in any area, to the state I was in before. To illustrate, my left leg weakness has gone from a percentage function level of 40-50, down to 0 and now a persistent 0-30. This drop in range of function holds true for every area affected by MS. Other than my nose, this seems to be every inch of me.
With little fanfare, my bladder lost its function. I am tethered to a Foley catheter and facing surgery to make it permanent. People blithely tell me how much better it will be once I have a suprapubic catheter in place. When the medical term for something I am going to live with for the rest of my life sounds like a word that isn't said in polite company, it isn't likely to be good. In fact, I find myself profoundly mourning the loss of my bladder and all it entails. Who ever thinks they will miss the mindless ritual of using a toilet?
My memory has also taken a scary turn. Not just middle-age forgetfulness: I am talking about blank spots in the middle of a conversation where I can't remember what we are discussing; I am talking about writing down every little thing I need to do each day in order to do it; I am talking about working with a memory specialist. I avoid the phone, laugh off the gaffs when I can't fill in the blanks; and paste on a smile. 
I am often asked how my claim of Christian faith fits in with my grim slog through life with MS. After all, aren't Christian women supposed to be virtuous and somewhat mindless Barbie Dolls? I rather prefer the recent revelation that for much of her life, Mother Theresa felt distant from God. Yet, she more than embraced a Christian life. My Christianity isn't an external facade; it is a commitment to a truth that flows through my life. Being a Christian doesn't make me happy or healthy or a lottery winner. It simply means that every day I survive steadily going toward something greater.
Surviving is the watch word of this day, this past month, and into the foreseeable future. So, thank you to all who help. Their acts serve as the cups of water that marathoners snatch from the hands of volunteers. 
Closing with a nod to Gloria Gaynor, Disco, and my Aunt who introduced me to this song many years ago:

Oh no, not I
I will survive

as long as i know how to love

I know I will stay alive
I've got all my life to live
I've got all my love to give
and I'll survive
I will survive


Peace Be With You said...

You are a truth teller sending your voice out into the wilderness so others thrashing about can hear you. What you are living with is not pretty. Nice words cannot gloss over the awful reality, but it is nice to know that a fierce You still exists. I will always welcome hearing You. God bless.

Ted J said...

Janine, thank you for your blog and your observations that even in the time of serious, serious trials we are still blessed. Your ability to write and express such is very much a blessing. Hope does spring eternal in all of us and certainly a very important part of coping. I watched an OPB special last night about what makes us different from the rest of creation and it appears that the ability to relate and anticipate others is a big part of it and even though they did mention religion they did not delve into it much, but did allude that connecting with our maker may have some merit (duh). Anyway, it was interesting and it confirmed that what you and I know that relationship, both vertically and horizontally is everything.

Blessings and Love,


Anonymous said...


As an English teacher, I praise your ethos/pathos/logos approach to this month. As a person who loves kids, I praise your opening lines. As a lover of Gloria Gaynor, you rock. And as your friend. Well. I love you. I love it when we talk about everyday mundane stuff. I need your wisdom when dealing with, oh, pretty much anything. You are an incredible friend and I need to make you a ham and potato casserole. Just cuz I love you.