When the nurse at the endoscopy clinic at the hospital took my history and then told me I’d get a call from the doctor sometime after returning home that day, I cried tearlessly and whispered, “I was hoping I would not be going home after this.”
The nurse looked startled. She studied my face carefully and said, “I’ll speak to the doctor.” Then she led me over to a recliner, where I was to be hooked up with IV fluids and wait for my procedure.
I thought the hydration would ease the throbbing at the back of my head and my temples. I was wrong. Two bags of the fluid did not save me from that wretched pain.
That mornning I had not eaten for forty-eight hours. I had not been thirsty the past two days either, even though my eyes were sunk into my head. I had sipped water diffidently because I thought I should, but my ravaged gut did not like it.
I think I scared the bejesus out of the gastroenterologist. I laid back on her table and when she turned to look at me and saw my face crumpled up, weeping tearlessly, she had no words for a moment or two.
Then she said, “Anna, what’s going on? This was supposed to be a routine endoscopy. I wouldn’t have taken you on if I’d known you were so sick.”
“I am so sick,” I told her, trembling uncontrollably. It was cold in that room. “I have not eaten or drunk water in two days. I’ve lost fifteen pounds in two weeks.” And other gory details I will not burden you lay people with at breakfast time.
She did the procedure, of course. And my esophagus and stomach looked beautiful. Just like all my other organs, my urine and my blood, which were tested thoroughly on two visits to the ER in the preceding days.
“I have to send you home,” the ER doc said both times, and both times I cried and cried.
At least the second time they sent me home with Percocet.
So the bottom line is that I was exquisitely healthy and wretchedly ill at the same time. I was having a toxic reaction – what my PCP described as a “remarkable reaction” – to the new medication I had started just before my symptoms came on. It was possibly my last hope for a tic medication that would not make me ravenous all the time except during sleep. My last hope, I thought, to take off the weight these beastly meds have put on me over the past twelve years.
How ironic that the toxic medication did just that! (Well, about half of it. I’m down 18 pounds now, and looking more like my “real” self.)
And finally I am feeling better. Eating small amounts of food. Thinking I will most certainly live. The tics are a problem, but I have promised myself to try non-pharmacological methods to control them now. Maybe acupuncture. Maybe hypnosis. No. More. Drugs. (Unless I get truly desperate.)
But Readers, there was an INCREDIBLE bright spot in my two weeks of woe. You might remember I told you, back in September, that our Rabbi, who is a faithful reader of this blog, invited me to speak at Yom Kippur services this past year. And I spoke about raising Benjy and confronting challenges with what I hope amounts to grace and resilience (not that I always do. Not by a long shot).
And because our congregation is unbelievably awesome – a group of folks that is eclectic in every way except for in their passion for social justice, their compassion, their learnedness (OK, that’s eclectic, too) – they responded in ways that brought me a lot of joy. Hugs from people I did not know, earnest hand clasping, thank-yous, reciprocation in the form of telling me their own stories of pain and resilience.
And some of them began reading this blog because they cared about following our family’s lives. How wonderful is that?
I don’t want to go into details, but some beautiful person or people among them have blessed us in the most astonishing and lovely way – for Benjy’s sake – and Lars and I found out about it during our second trip to the ER. Let’s just say tears of anguish turned to tears of gratitude. And then we laughed. And then Lars said, “Maybe you should not write so openly and honestly.” And for a few moments I thought he was right.
But then how am I going to let the world know about the various costs, to families and to society, of disability – especially mental illness? Those costs take different forms, and it almost feels like an ethical obligation on my part to start a discussion about them. Certainly in light of recent events – and the challenges of accessing good mental health care for children and adolescents in this country -- it seems so.
It has always been hard for me to accept help of any sort. My bestie visited this weekend and wanted to clean my crazy-dirty kitchen. And I hemmed and hawed and said no, I can do it, until finally she said “Just sit your ass down on the couch and let me clean the damn kitchen! That’s why I’m here, Dummy.”
(“Dummy” is a term of endearment. She loves me.)
I’m not sure why it’s so hard to let people help. But I’m working on that, reminding myself that I help others in our situation when I can, and am happy when they let me do so.
That’s what community is about, right?
So all there is really left for me to say to some special person(s) whom I have touched and who have deeply, deeply touched us is:
We love you. And thank you.