August 22, 2010

I wander from room to room of the beautiful home Linda and I bought and lovingly furnished 8 years ago, and without her lilting laugh and sparkling smile to brighten the place it is nothing but a huge echoing cavern of lonely emptiness. Though there are still traces of her blood on the master bedroom carpet where she fell and cut her scalp a few weeks before her transplant, yellow plastic emesis basins scattered about the place, her walker, shower stool and blood pressure cuff to remind me that she wasn’t at all well when we were last together here, it was a happy home even when she was too ill to get out of our bed without my lifting her or the help of a home health assistant. Now I am left wondering if she will ever come home to share the house with me again.

Thanks to the machinations and intimidation tactics of the doctors at Indiana University Hospital who were supposed to give her a new liver and restore her to good health, she is still down in their clutches in Indianapolis on a ventilator and feeding tube, which she never wanted, a month and a half after she was supposed to be home here enjoying her recovery from the transplant surgery. The people who hurt her over and over again, during and after her surgery, have the temerity to cut off all communication between me and Linda on the pretext that somehow I want her dead so I can collect the life insurance money. This is what happens when a family member questions the audacious and arrogant judgment of a doctor about what might be best for a patient. There is no help for anyone whose wishes differ from the recommendations of the all powerful medical profession. All the health care powers of attorney and advance directives in the world only set the outlines of the battleground between patient and doctor. If your physician believes you might recover, he or she has the power to prolong your suffering despite your express written wish to the contrary, merely by concocting a reason why the family member you entrusted to advocate for you may have a conflict of interest. The doctor then evicts the family member from the hospital and proceeds to do as the doctor pleases regardless of the patient’s wishes.

Of course I don’t know how Linda feels about any of this now, since I am not allowed to speak with Linda at all except for the brief recorded phone conversation placed by the hospital to me Thursday evening. Interesting, they feel justified in recording my phone conversations with Linda, but refused to videotape their “conversation” alone with her when she could only mouth words while on a ventilator with a tracheotomy. How one sided do things get in the medical world? Debbie has not communicated with me at all since that Thursday phone call.

The information the hospital does share with my lawyer about the prospect of Linda’s transfer closer to home any time soon is directly at odds with what Chuck tells me Debbie is telling him the hospital is telling her. According to what the hospital tells my lawyer, they are working to get Linda sent up here to RML Specialty Hospital as soon as possible next week. Debbie tells Chuck neither RML nor Kindred Northlake will accept Linda, and that IU Hospital says Linda will have to stay down there until she is weaned off the ventilator. Someone is not being honest about what is going on. And, heaven only knows what people are telling Linda.

I know in my heart Linda is doing everything she can to get better and come home to me. It would probably help in her battle back to better health if she could at least hear me cheering her on, even from afar over the phone, but Clarian will never let that happen. They have taken control, and will never let go until Linda herself is strong enough to make them let her out of there. All I can do now is wait for some word from them, and do what is required on the outside to arrange for her transfer back to the Chicago area. I have depended on Linda for so much of what strength I have had during all our years together that this loneliness penetrates right to the foundation of my soul. Everything we have enjoyed and everything we have endured we have enjoyed and endured together, and now we are separated by forces outside of us. Realizing the effect this is having on me, healthy and strong, I can only imagine how it is affecting Linda in her sickness and frailty.

I have called upon some old and dear friends – you know who you are – to help facilitate Linda’s transfer if necessary, but I’m not going to disclose their involvement now lest premature revelation should upset the apple cart. My thanks to them and to all of you for listening to me pour my heart out in these troubled times.