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 ... .