At the end of a long slog through day surgery for a superpubic catheter on Thursday, my bro-in-law found some humor that made all of us howl with laughter. His phone has an app that randomly generates a scripture of the day and on this day it was:
He that believeth on me, as the scripture hath said, out of his belly shall flow rivers of living water John 7:38
Who knew? My new appendage has a scriptural application. So far, this is the only thing I have found humor in during this whole process. The surgery itself was blessedly a few blank hours. I remember wondering 'what is the white goop in the syringe that the anesthesiologist was adding to my IV line' and then waking up in the recovery room. My doc told me that full or partial anesthesia was my choice. I knew that I didn't want to be awake for any part of this. On days when the nerve pain is bad, I wish that I could have a dose of that milky goop and wake up blissfully unaware hours later.
I was surprised by how much pain I was in by Thursday evening. It felt like a red-hot poker was jabbing into my belly every time I moved. The home health nurse assured me this was normal (why don't they explain this ahead of time?) I for one, prefer to know the cold hard reality rather than be surprised. I am getting better hour by hour. As long as I don't bend at the waist or stretch past a certain point or pick up my 8lb dog; the pain is more a dull ache.
As a chronic pain veteran, there is pain I can tolerate and then there is pain that must be responded to. The electric icicles that randomly stab my left leg, arm, face and head, and lately my right thigh as well, can't be ignored. These jabs suck all the light from the room and reduce my focus to a square inch of my anatomy. I gasp, I cry, I fold up like a fortune cookie. I don't think I could live if this type of pain came much more frequently.
So, the next chapter opens with the subheading, 'life with a belly cath.' I haven't lived with it long enough to have an opinion. Right now it doesn't seem real that part of my anatomy is running on a new track. I hope that once I work through the initial struggles of adjusting to this new normal; it will be just that: Normal
No Gifts Please—after all—Where to Register?
Should I throw a bon voyage party for my bladder? After all we haven't had the best relationship over the past few years and lately are barely communicating at all. Next Wednesday, with a one-day surgical procedure, my bladder will be closed down and replaced with a suprapubic catheter. Basically, a tube that runs from my bladder out to my abdomen.
Maybe a funeral would be more appropriate. If I let the emotions surface I feel tears start to well. This is the first of my internal organs to require surgical intervention and to ultimately stop being functional. Simply too much loss to inspect too closely. People blithely tell me how much easier my life will be once this is done. Suggesting that it must be nice not to have to make trips to the bathroom. I'd much rather have my bladder back, thank you very much.
I also don't find anything humorous about this. Especially when folks make jokes about the new tubing being similar to how men pee. I am a girl losing her bladder function. And, to put it simply, it sucks.
After the past few weeks with a hospital stay, my permanent loss of more function, piles of medical bills, and now this surgery, our household is about at its functional threshold. A big thank you to my brother-in-law for his willingness to fly down from Alaska later this week and help us through the surgery days. I have this cartoon image in my head of the top of my husband's head popping off and steam pouring out of his ears. One of these days, it is going to happen
I think I will pass on a gala or a funeral. This is one of those invisible losses better suited to contemplation. As with everything else, I will try to move forward and not root around in memories and could have/should haves.
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
