Butterfly grew up with food intolerances and was diagnosed with ADHD, Asperger's
Syndrome, and learning difficulties. Now she struggles with OCDs.
This is the story of how we have faced these challenges.

Friday, April 27, 2012

And so.....

When I was a younger woman working at a college, one of the professors asked me, a little facetiously, what I wanted to be when I grew up. I thought about it a minute, then replied, also a little facetiously, “a curmudgeon.” Of course, I had no way of knowing just how prophetic that answer would be.

It is 2012 and there is an election going on in the States that involves a lot of ignorant, intolerant and even hateful rhetoric from the party on the right. This has apparently given license for all kinds of intolerance, bigotry, unharnessed anger, homophobia, and even unbridled hate, to come out of the woodwork on today’s social media. This even stands out in a cold world that worships money and seems to have little kindness and compassion left in it anymore.

We gave a doctor one more try, and this time the doctor we saw was a gracious and gentle man. We got an appointment with this specialist with the help of his caring and generous assistant. Things were looking up. The doctor ordered an MRI for Butterfly, to have a closer look at some scaring and calcification on the dura around her brain. He assured her she would not have to have dyes put into her if she didn’t want.  Butterfly didn't want.  She has a fear of needles.  Sure, it's an irrational fear, but fear is fear... something that is apparently hard to understand.

Come appointment day, we headed to the big smoke to both see the doctor again, and to have this MRI done. We left the doctor’s office shortly after noon and headed to the Imaging department. There was a mix up about the appointment time, so we thought we didn’t have time to do anything else but wait. Turned out we could have gone to at least explore nearby Kensington Street, but we didn’t know that at the time. Butterfly was moody, nervous and antsy. It wasn’t a test she was exactly looking forward to. I enquired about the time when what I thought was our appointment time came and went. This set into motion an unhappy chain of events.

Nurse Comeuppance came out to get Butterfly. I went too. The nurse clearly wanted to put Butterfly in her place for rushing them, so she went over Butterfly’s answers on the questionnaire she’d filled out with tedious slowness. Butterfly tried to cut to the chase, but the nurse would have none of it. She was going to singlehandedly teach Butterfly patience. Then the nurse informed Butterfly she would be given dyes. Butterfly protested that the doctor had said she wouldn’t have to have any dyes. Nurse Comeuppance very slowly (with exaggerated patience) explained that our doctor was not in charge there, the radiologist was, and he would want to use dyes. Butterfly was panicking. In fact, her panic was very plain to me. I explained to the nurse that Butterfly has autism, hoping it would help stop this torture. It didn’t. If anything, it made her tone even more condescending. It apparently did not occur to this nurse that Butterfly was there to literally have her head examined, and there might be an actual reason for that.  Nor was this nurse willing to make any allowances for FEAR.

Longer story shorter: her panic at a crescendo as the nurse insisted on repeating everything again, Butterfly ran screaming from the unit. I had a heck of a time finding her. Even as I searched in this rather large, big city hospital, she was, she told me later, sitting in a second floor doorway hyperventilating. When I found her, I told her we could just go home. But she wanted her MRI. She just wanted a different nurse. Again, longer story..... the second nurse was angry on behalf of the first one, because apparently in this hospital, the nurse’s egos and their need to teach impatient people a lesson, is just way more important than anything the patient might need. Butterfly ran screaming obscenities this time.  She told me later that she hadn't meant to run the first time... it just happened.  But the second time, she was just mad.

You know, that little trip to the city cost at least $120. out of my meagre grocery budget, and a day of our time, not to even mention the emotional cost, all for a lovely chat with the doctor, and a very bad adventure with some insensitive, self-important nurses. I give up. I accept that we are living in an ignorant, intolerant age and there is no practical help or compassion to be had from modern medicine for my daughter.

Butterfly continues making adjustments to her diet. She has found animal protein makes her feel sluggish. She is now gluten-free vegan. (photo - her GF, vegan pizza)  She will continue to struggle. She will continue to do so with little support. There are a million different worthy “causes” in our world, from autism awareness, including insensitive CAS agencies stealing children from their parents, to so many other health and wellness emergencies amongst our children, as well as obesity, heart disease, diabetes and more amongst both the children and the aging general population. And this is not to mention terror, crime and poverty. It's a troubled world, and I have tried to help whenever I can.  But I have nothing more to give ~ especially when the requests for help have started coming in the form of accusatory, judgmental, demanding posts.  Don't need it.  It's simple: ask nicely, or don't ask. What little strength I have left is reserved for my daughter, and for those few friends and family who are caring, and who “get it.” I am going to leave the rest of the world alone for awhile. I'm feeling at this point, as if I will never recover any of my former strength. I'm not getting any younger and there have been too many disappointments, setbacks, and heartbreaks... entirely too much water under my proverbial bridge, eroding and weakening my supports. I am becoming that curmudgeon I imagined in my cynical youth.

People, what a species.