Friday, July 15, 2011

Throughout my workday, the image of Sr. Corita Kent's colorful poster from the Sixties -- "Don't just DO something, Stand there!" kept flashing from somewhere deep inside ... .

Yesterday in Dr. Smith's reception room was my "Stand there!" moment, and I was helpless to resist.

For just a few moments while Dorian was with the medical assistant undergoing a 500 item true/false test (being read to her), the psychologist invited me into his inner office for some clarification of conflicting facts in Dorrie's interview -- nothing especially noteworthy, just some confusion around dates and times.  But it was his questions about any signs of changes in her mental states that I may have noticed in the months after the accident.  My hesitancy in answering his question puzzled me.  I could feel the hesitation and mumbled something almost incoherent (or so it felt).

Her life had surely changed unalterably, and there had been traumatic injury, but why were the signs not obvious to me?  After all, she'd been moved out of a group home, been through 2 rounds of surgery, been relocated 5 times (counting her move back home); before moving eventually into her own apartment; had lost her peer group; and had she really weathered all that without any visible effect?  I consider myself an observant mother, but couldn't point out what must be quite obvious to others.  Why was that?

Well into my reception room " 7-hour retreat" it began to dawn that I had done the thing I've spent an entire life trying to avoid; I'd filled in all of the "holes" in Dorian's life with huge chunks of my own!  Because this has been an unusually productive period with many honors and rewards and meaningful work to do, I've been blinded by the reality that since November 27, 2009, I've given up the one friendship (with Tom) which provided a peer relationship.  Those occasional lovely weekends at the ocean in Mendocino have ended; those occasional celebratory dinners at Tadich; visits to the DeYoung, the San Francisco Museum of Modern Art; the occasional concert and/or play; walking the headlands, and wandering through the Mendocino and Fort Bragg art galleries; had all abruptly and unceremoniously ceased.  I miss riding up and down the Coast Highway in Tom's little red Citroen
Duex Cheveaux - the "Geezermobile" and sitting around in the evenings arguing politics while looking up through the skylights at the incoming fog bank... .

For the first six months of last year I worked my regular hours and visited Dorian in various facilities every day -- sometimes twice -- bringing her yarn for her various projects and picking up soiled laundry or returning clean clothing.  In June, she moved into my condo (returning to the group home was not an option - or was it?) where she remained for several months.  Since moving into her own apartment about 5 minutes away from mine, she has no life except for NIAD and the time shared with me.  Her weekends are all spent at my apartment.  Her income is limited to SSA so I pay for a part of her rent and most of her groceries, and I've given up both cable service and my house phone augmented by liquidating some limited Roth IRA shares in order to do so.   After all is said and done, could this not be the emergency I'd always been saving for?  I've made my daughter dependent in ways that are new and really not healthy for either of us.

I've been anticipating every bump in the road, and providing cushioning against a world I no longer could trust with her life.  Small wonder that I can't find signs of trauma in my daughter -- I've absorbed most of that into my own.  Had I not been there to catch her as she fell, she would have had to use that social system that we've spent so much time preparing her for.  She has more of me and my time than ever before in her life.  I'm completely dominated by her needs, and I've failed her in that -- after granting her autonomy I've snatched it away to ease my own guilt at being off scene when she was struck in the streets -- guilty because she'd lain in a hospital bed beyond the reach of anyone; unidentified because she was carrying 5 different identification cards -- none of them current, and in a hospital in a strange town because her medical coverage had been allowed to lapse for 6 months prior to the accident!  (All the responsibilities of her supervisors from the vendor operator, social worker, and assigned case manager.  The accident laid bare a badly degraded system designed to serve the developmentally disabled.)  I was out of cell phone range, 3 hours away, until Monday morning 3 days after the accident, when on the drive home my cell phone came alive with an urgent call from a strange voice of a male nurse, " ... does anyone at this number know Dorian Reid?, if so, please call Eden Medical Center and ask for Zack."  Her group home supervisor did not know where she was because she'd been visiting friends in a nearby town for the weekend.  She hadn't been missed until I notified the house of her whereabouts on Monday morning. The friends she was visiting with were also mentally disabled and living independently in an apartment in a neighboring town.  They did not report her missing, but continued to try desperately to reach her when she failed to return.  Her cell phone was lost at the scene of the accident.  This I learned when calling her number to find the voice mailbox filled to its capacity with frantic messages  ("Dorrie, Dorrie, where are you?  Dorrie, call  us, please!") a few days later.  The phone was never recovered to my knowledge.  It was her lifeline, had she had it she would surely have called me when she woke after the surgery.  It was her connection to everyone in her life, and that connection was now hopelessly broken.
If Dorian hasn't displayed the trauma that surely she experiences, it's because of the regression that I've
gone through.  She is still productive and is back in her arts program at NIAD (a Godsend!), but her mobility is now curtailed by a weight gain (25-30 lbs) and a less responsive body from having to use a walker and wear a leg brace, the chronic headaches, and losing her physical activities as a year-round Special Olympics athlete has reduced her social life to nil.  (Could her excessive sleeping pattern be symptomatic of depression?)  There are always weekends with Mom to look forward to, of course.  And Mom can be so engaging; so resourceful; fun!

With a conscientious "Mom" anticipating her every wish, who's to worry?

So, now that I've "stood there," Sister Corita, what on earth do I do now?  Dorian hasn't the mental capacity to know what is missing from her own life and little reason to want more independence or autonomy, but her mother needs her own life back, I think, and the sooner I can regain what little there is left of that -- the better, right?

I used to say that keeping distance between us and allowing Dorian her autonomy gave me the luxury during my lifetime of seeing how she would fare in the world after I'm gone.  Told myself since she was a toddler that my job was to teach her to use systems, find her way through bureaucracies; social workers, case managers; that it was of far greater value to her for me not to provide answers but to direct her to others out in the community who could supply them in my absence.  I created myself a role as "Mother as best friend."  It worked, I thought.  She surely fulfilled her part, and I truly believe she uses everything that she has and has been "maximized" as much as possible.  She clearly has developed enough skills to get her basic needs met.  I believe we've done all the right things, until now.

How on earth do I step back now, and trust the world with her life; yet that is precisely what I will need to re-learn, even knowing that she may not make it.  She must continue to have the chance to try.

Maybe now that I've had that precious 7 hours to face up to the truths that I've masked all these months, maybe I'll be able to see the signs of trauma that she surely must experience.  I've so needed to believe that she is alright, and my own world has provided so much distraction, a blessing, really ... .  

Fortunately, I have my work, and - though barely adequate in these times -- my fiercely-guarded financial independence -- but we just may need to consider professional help to resume the direction toward that separation that is now eluding us, and that is so essential if I'm not to abandon her to impending "natural causes."  I have so few answers at this point, and little confidence that anyone has. 

There is so little time left to correct our course ... .
Just hit the proverbial brick wall ... and I'm not sure what to do about it ... .

On Wednesday Dorian and I met with the orthopedist who was assigned to do an evaluation for the pending litigation having to do with her 11/27/2009 auto/pedestrian accident.  I'm not sure what I expected, due to the fact that the only experience I've had over a lifetime having to do with attorneys had to do with my divorce which was amicable.  It seemed logical to follow the advice of those professionally involved in such matters, and there were certainly enough existing records to draw from and the only confirmation of claims lay with examination of the one involved; Dorian.  I could be of little help in this matter except as support for her, but only if needed.

I waited until about two days before to tell her about the two appointments (Wednesday orthopedic, and Wednesday, psychological) so that she would not be needlessly apprehensive.  The truth as she could recall it and whatever impressions they could illicit through their meeting with her was really all she needed to provide.  Ten years of marriage to a psychologist had perhaps prepared her mother, so it felt about right.  I picked her up from her apartment on Tuesday night so that we would be ready for the drive to San Francisco early in the morning.  She asked few questions, and seemed comfortable with the arrangements.  On the drive over in heavy commute traffic, she was in charge of the GPS system and aided the robotic voice by repeating the prompts at each highway change.

Wednesday went well.  The physician was warm and welcoming, and seemed well-prepared to receive her.  In about 4 hours we were on our way home, and the only threat was the drive across the S.F./Oakland Bay bridge, which we navigated successfully (this had been the only threat I've felt in the days leading up to these appointments).

Yesterday's appointment turned out to have some hidden landmines:

The psychologist let us know -- even before we left the reception room to enter his inner office  -- that this session would last for at least 7 hours!  (He told us, as an aside, that the procedure normally takes 8 hours, but that we were starting an hour later than usual in order to accommodate our wishes.)  We'd had no warning of this, and my minimal preparation of Dorian provided no hint of what this might entail.  Actually, she's never  undergone such intensive testing before in her life, so neither of us knew what this meant.  It also meant that I'd not come prepared with a book to read or crossword puzzles to solve, and would be forced to do something completely foreign -- sit and think for 7 whole hours --uninterrupted!  This is called "hitting the wall," and it would prove to be sobering, indeed.

But now I have to leave for work, and the revelations brought on by my enforced stoppage will have to wait until I get home this evening ... but I think the insights were profound;  maybe even life-altering.

More later,