January 19, 2013

still life

Maneuvering Segev into the bathroom for his shower (the bathtub is defunct) is fraught with danger. The door entrance is narrow and getting in requires coordination and a little bit of luck, since at any given moment Segev can have a seizure and begin flailing his arms about. His massive kyphosis requires holding him in a certain position for stability as well as not to put pressure on the neck as your hand tends to slip up his rounded back.
It is best when there is an extra pair of hands to assist but the built-in shower walls will only allow one person access to Segev at a time. Strangely this always makes me think of Samson in the narrow passage warding of the hordes with the jawbone of an ass. The side supports of his shower chair are more like two little bumps to irritate him rather than actually give support and with his random and uneconomical movements a large velcro strap is used to 'secure' him.
The water of the shower, coming from a hand held nozzle would completely flood the bathroom if I didn't put a laundry tub partly under the chair for his feet to dangle in. I drilled two holes in the bottom for drainage.
Preheating the bathroom is necessary as it is 10 C in there without. I cannot undress him in the livingroom and then bring him because if he is properly covered I won't be able to put him in the chair and extricate him from the towel. Besides, his suction has to come as well and carrying the suction pump on my shoulder would not allow us to enter through the door. So I wheel him into the hallway, which is just wide enough to take his wheelchair through, but has ninety degree turns which necessitate lifting his chair at the back because the small wheels won't give enough pivot. There I will undress him as quickly as possible, as he sits in the chair. I have the option of turning on the water first, in order to warm up the chair for him, although there is no place to put the shower head except to wedge it in one of the official retaining straps, which is made of a material similar to that used in the space shuttle, able to withstand the effect of aging that otherwise would have a chance of lowering its degree of abrasiveness to a level allowing actual use.
But the water temperature constantly fluctuates as the cold water is stuck in a continual cycle of ebb and flow, fighting a vicarious battle against 60 year old plumbing. This means that by the time I actually lift Segev out of his chair the temperature can either be scalding hot or unreasonably cold. Therefore I usually forgo this and put him on the cold chair, tie him in, all the while guaranteeing him that he will be warm in just a moment, and then start playing the water ballet, hoping in the interim Segev doesn't cough, requiring suction, or have a seizure. The latter results in him hitting his arms against the marble walls of the small shower stall.

Now comes the part of why I created this entry; the shower itself does something for Segev in a very positive way, surpisingly so because nothing else even comes close to this.
You see, Segev's neck is in dire straits on a permanent basis. On the right side it is wholly rigid because his massive scoliosis pulls to that side. His shoulder, the area actually between his shoulder and his ear, is hard and set up high from the internal pressures of his derelict physique, where his intestines are in his chest and his heart has been pushed over to the right side of his body, amongst other things. 
On the left side of his neck resides damage accrued from surgery he had to implant a VNS device. Perpetually swollen and sensitive, with rigid lines of hardened tissue and darkened veins protruding increasingly.
I use the lubricating aspect of the water and soap on his skin to provide a caressing massage to mostly his legs, arms and shoulders with good effect. Not so long ago I began to experiment with using different streams of water to apply a long, gentle massage to his neck and was simply stunned by the effect.
After several minutes of the localized barrage of water Segev becomes visibly relaxed. His jaw recedes less, his breathing is clearly less labored. Lines of tension on his forehead from recurrent physical discomfort melt away, and the expression in his eyes, that of a newly discovered wonder, with a look of complete relaxed and smiling contentment washes over his face. 
Watching him I can feel my chest begin to relax and it is only because it strikes me as a bit absurd, that I am able to hold back tears of joy.
After twenty minutes of this, Segev's schedule calls me to finish, as well the awkward sitting position I take up beside him, pressing on my back. Then, replete with wet sleeves and soaked shoes I begin the not-so-slight undertaking of extricating him from the chair without hitting his head against the protruding second wall, into a towel on my lap, while sitting on the commode next to the shower. From there it is a slippery few seconds to wrangle him back out through the door and into his chair.
Difficult and tiring, yes. Worth every bit of effort for the reward of his temporal serenity? Yes and again yes.


  1. So often it's hard to find words to respond. Your enduring love and faithfulness to Segev is a balm, comforting and soothing to my heart. I hope that makes sense.

  2. "Watching him I can feel my chest begin to relax and it is only because it strikes me as a bit absurd, that I am able to hold back tears of joy."

    I know difficult bathroom, wheelchair that won't fit, awkward lifting that at this point only I can do, feet carefully planted because I must not slip. My daily experience, not even close to what you must manage with Segev despite bits of shared vocabulary: the kyphosis, maneuvering, strategizing, invented solutions; the deficient plumbing. And I know that feeling of profound thankfulness. I'm glad your chest can relax, since it's where your heart sits.

  3. Having an "able-bodied" daughter around the same as your son reminds me of how much my daughrer loved taking baths & showers when she was younger. She would first struggle when I announced "bath time" but never wanted to get out of the tub when it was over. I am sure that Segev enjoys his bath/shower time tremendously! Thank you for sharing.