Hospitals… it’s hard to imagine a worse environment for someone with communication, social, and sensory challenges. Unfortunately, in addition to autism, I have extensive medical issues due to mitochondrial disease (mito). My body has trouble making energy, so I have a lot lines, tubes, pumps, and other extra hardware. When something breaks, it’s a dash for the ER.
The beeps and smells and hospital gowns are an instant sensory assault. The many people and their rapid questions quickly overwhelm my ability to communicate even when I know the answer. Sometimes, doctors make assumptions about my behavior, assuming that I’m not capable, that I’m happy to be there, or that I’m not showing respect.
It was one such unlucky night that my central line (a large, semi-permanent IV in my chest that goes to my heart) broke at 3 AM. I went right to the hospital, and eventually, I made my way to Interventional Radiology (IR), the department where these lines are handled. I knew the stress of the procedure could make my chronic migraine into something truly ugly, so I asked for mild sedation to keep my body relaxed and avoid triggering my headache. They told me no. They don’t sedate for this. This is easy. This will be so quick, even painless! And anesthesia would take too long.
It wasn’t easy or quick, and it definitely wasn’t painless. Those 90 minutes were the worst medical procedure I’ve ever had. The whole time, the team complained that it was already past their quitting time and that they still had one more patient. Anesthesia would take too long…
That night, back at home, the stress, the communication breakdown, the sensory onslaught, the surgery while I was wide awake… it triggered the worst migraine episode I’ve ever had.
The next time I had a line emergency, two months later, my favorite IR doctor was there. Dr. N had no problem with mild sedation. He surprised me when he asked if I had something I particularly liked–yes, cats! His nephew is my age and on the spectrum, too, he said. He likes movie credits. I was sedated enough to be relaxed but still awake, and the doctor spent the entire procedure swapping cat stories with me. It was the best surgery I’ve ever had… and I was awake!
The most recent time I had my line changed out, the IR doctor was one I didn’t know, but he was fine with sedating me. I was so proud of myself for advocating for my needs–“I’m a tough cookie, but I had a really bad experience earlier this year. When I’m stressed, my migraine surges.” It might not have been quite so pristine in delivery, but even so, those are not words I gather and share easily.
As I hung out in the holding area, Dr. N came over to ask what adventures I’d had since the last time he saw me. “Well, I’ve been in the Wall Street Journal… And on Good Morning America!” I don’t go around shouting it—really—but he did ask about adventures!
“No way–if I Google your name, it’ll come up?”
He did. It did. He left the story up on the computer screen beside my bed in the holding area and told every passing staff person to go look.
When I went back to get ready for the procedure. I asked for a pillow under my knees and something to block the light in my eyes. Who is this person so calmly and effectively advocating for heself! Where has she been all the other times!
From the next procedure room, I heard Dr. N’s voice. “But it’s my line… I placed it back in April! My line is in the Wall Street Journal! It’s famous!”
He had no way of knowing I could hear him. I knew he was being somewhat silly. That made me laugh even more.
He came in and finished the prep… I don’t quite know when it changed hands or why, but he was doing my procedure. He said it would take longer to place a temporary line for sedation than it would to just do this thing without it. He said it would be no more than five minutes. One stick for numbing medicine, the only thing I’d really feel. “We can totally do this and get you out of here.”
I cautiously agreed, as long as he told me exactly what I would feel.
It turned out that he was right. One stick, no other pain. And it was more like two minutes till he had me all back in order. He told the nurses to wait a second before they sent me back to holding. The whole thing was so quick, he wasn’t finished with his cat story yet, and for this rare doctor, that was more important than getting home three minutes sooner. I hope he knows how much this rare patient appreciates it.