I was diagnosed with Parkinson's Disease on (checking calendar) September 14th, 2011. Almost immediately following that appointment, my Neurologist (suddenly I had a Neurologist) arranged for me to have an MRI. This would be more of a confirmation of the Parkinson's diagnosis - we weren't really expecting to find anything troubling (and as it turned out, we didn't).
Horrific as this will sound, I found myself hoping the MRI would, however, turn up something. I was just beginning to learn all about Parkinson's but the few things I'd already learned scared the crap outta me. First was that there was no "getting over" it. As I've written a few times already, today is the best I will ever be. That's ... unsettling. Also there's no telling what my afflictions will be. I may lose the ability to drive, walk, swallow, smell, speak ... or not. I am, by nature, a planner, so do I start to plan for the possible loss of mobility? What if that never comes to happen and instead I can't eat anymore but I didn't plan for that? At what point do I retire from working so that I can enjoy whatever non-PD afflicted time I have left ... and what if I retire at 45 but don't really "progress" (if one can call it that) until 68? Or what if I "progress" tomorrow? So, yes - because of those thoughts, a small, completely harmless, easy-to-remove tumor would have been OK with me. A tumor - a small, completely harmless, easy-to-remove one - could be something I could recover from. It wouldn't require medication for the rest of my life. It wouldn't cause my walking to change and it wouldn't get in the way of my writing by hand. A tumor - again, of the small, completely harmless, easy-to-remove kind - probably wouldn't change my life.
Anyway, the Awesome Fiance Then Awesome Boyfriend (or TAFTAB) drove the two of us to the designated facility on the day of my scheduled MRI. I was already feeling edgy - I've had the MRI experience before but it was in a familiar setting and I'd seen the process, so I'd known what things would be like. Walking into this unfamiliar space was ... uncomfortable and awkward. It was located right next to Oncology, which I immediately resented (and said so to TAFTAB). And when I checked in at the front desk, I was given a two-page form to complete. This really pissed me off. The way I saw it, I was there for a test I didn't really want to help confirm a diagnosis I didn't need to hear and completing paperwork what would take anyone else 5 minutes to fill out instead of my 20 minute average was aggravating. I turned to TAFTAB with defeat in my eyes and he took pity on me and helped me do my pre-work.
My name was called after about 25 minutes and I was shown to the changing area. I was given a full-cover gown (instead of the usual hospital gowns where you need to decide if you're going to show off your front side or your back) and was then escorted to the MRI exterior room. I was asked (again) if I had any piercings, heart equipment, hearing aids ... ANY metal on - or in - my person and was then shown into the room.
The lights were dimmed somewhat and the machine itself was larger than I had visualized. I wondered if they kept the room lit this way to make the machine seem smaller but, to me anyway, the "mood lighting" had the opposite effect and it sat in the shadows ominously. I laid on the bed/slab and started to try to trick myself into thinking I was at a spa, waiting for a massage. The lighting for that little fake out helped, actually, as it was similar enough and I was feeling ...... not confident, exactly, - WRRRRRRR the slab started moving me head-in towards the "capsule" of the machine WRRRRRRR - but comforted. I reminded myself that TAFTAB was waiting for me just a few rooms away and
and my nightmare started to replay in my head. The whole damn reel of it. The sensation of being crammed in my Great Aunt's Datsun was similar to being slid into the MRI. The lights in the room - instead of being comforting, immediately became morgue-like. And then the scans started. My Great Aunt sitting in the box CLICK CLICK CLICK WHRRRRRRR CLICK CLICK THRUMP GRIND CLICK. Silence. My family quietly talking nearby but I can't hear GRIND CLICK THRUMP THUMP. I can't find her hand WRRRRRR THUMP CLICK GRIND. Silence. Maybe we were already done. CLICK CLICK CLICK THRUMP GRIND. "Spa, spa, spa" I repeated in my head. "Worst. Spa. Ever." my brain responded back. THRUMP GRIND CLICK CLICK. Little blue hat THUD GRIND GRIND GRIND TWEEEEEEEE. "Alright", I reasoned, "make a pattern from it." CLICK THUD GRIND GRIND GRIND TRIND TWEEEEE. "Next will be a 'thud'", I decided. GRIND THRUMP TWEEEEEEEE THRUMP WRRRRRR STHSTHSTHHHHHHHHH CLICK. "Damn - letsee I guess we're due for a" TWEEEEEE CLICK STHHH STHHHH STHHHH CLICK WRRRRRRRR. And on and on it continued.
I don't know how long it went for, honestly. Way too long. It was the closest I've ever had to a full-on panic attack. It probably would have been alright except for the visuals in my head. When escorted back to the changing area, I managed to completely re-dress myself in about 14 seconds. I practically sprinted from the room down the hall and into the waiting area, where TAFTAB was seated and I pretty much grabbed his arm and kept my stride going full-strength. "How was it?" he asked. "Awful. Horrid. Never again. Never, ever again" I vowed, and I meant it.
I was mad, scared, upset and ... relieved. That nightmare was scary as a child, but it was seriously terrifying as an adult. The difference is that, as an adult, I have a say in dealing with experiences. And, since there is no tumor - of the small, completely harmless, easy-to-remove kind or otherwise - I won't be putting myself through that again any time soon.
Monday, January 9, 2012
Tuesday, January 3, 2012
Memories of My Nightmare
In this nightmare, I was my then-current age - not even 10. I remember we somehow as a family all fit into my Great Aunt's Honey Bee Datsun, and I remember us standing in a parking lot that my dream-self seemed to be able to locate but my real self was unable to pinpoint.
I was dressed up a bit (in a dressy pair of pants and a nice top), as were most of the rest of us. My Great Aunt and my Grandmother were both very dressed up - hair done, nice shoes, etc. My Grandmother even had a small blue hat on - something I'd never actually seen her wear but I had seen photos of her wearing such a hat. I must have really liked the look to have dressed her this way in my sleep. We all walked into this building, which seemed to be a cross between something medical and something that I'd now define as spa-like.
There was a front desk and a nice lady sitting behind the desk who seemed to know who we were and why we were there. The space was large, with a metal open stairwell swirling around the room, however there didn't appear to be a second-floor, really. There was a landing area that I could see from where we were standing but there was nothing beyond it.
Without really knowing why we were there, I was told that my help was required. I was given a task - a simple one but one which I was being told was ultra-important. It was then that I noticed a box in the center of the space (and the front desk was somehow now gone). As a grown-up today, I can describe it as a single person steam box, with openings for ones head to be out at the top and hand holes on either side. It opened by lifting the side with the head opening up and then swinging open the front doors. This, however, is how I'd describe it today ... it's apparently NOT how I described it at the time of the nightmare.
Anyway by this time, my Great Aunt was in this box and her hands and head were outside as one would expect. My task, it seemed, was to hold her hand. My child self liked this task. There were, as I've shared, NUMEROUS times when she had comforted me and held my hand ... so paying the favor back was alright by me.
The rest of my family was milling about and were quietly discussing something or another - I was just beyond hearing range and they were speaking in hushed tones. My child mind imagined that they likely were impressed at the terrific job I was doing and how I was being a great help. Beaming with pride, I straightened myself up just a bit, brushed my pants down and noticed the floor I was standing on was a patch of carpet. Leaning down to look at it more carefully, I saw it was slightly padded and had specks of lots of colors in it. After I was done inspecting the floor, I stood back up and reached to hold my Great Aunt's hand ... but it didn't seem to be there.
Uh oh.
I glanced nervously at my family gathered in the room and none of them appeared to have noticed the lapse in my assignment so I turned my attention back to the box. I jammed my skinny arms into the box in an effort to find my Great Aunt's hand but nothing seemed to be there. I jumped up where I stood to see if I could ask her to put her hand back out for me to hold but couldn't see her face. But I caught a glimpse of a small blue hat.
Panic set in.
Somehow in my mistake, my Grandmother was now in this box and only I seemed to notice. I called out for help but it seemed like there was a glass wall between me and my family. They couldn't hear me and weren't noticing my movements. I tugged with all my might at the doors and latches on the box but nothing budged. The small blue hat sunk lower below the top edge of the box opening.
My Great Aunt walked around the glass wall and said, calmly and without concern, that I'd done the best I could and that she was alright. The family gathered around and blocked my view of the box, which was being wheeled away by some unseen method. We all walked outside, even though I was still loudly protesting and apologizing, and instead of the familiar yellow car my Great Aunt drove us in waiting for us in the parking lot, we all got into my Grandmother's blue Chevelle. My Great Aunt was now the one missing and my Grandmother was sitting next to me.
I was screaming at this point in the nightmare. Screaming that we couldn't just leave my Great Aunt there and that it was just a stupid mistake on my part and how I could do better if just given a chance. How she had talked to me and said she was ok and that we couldn't just drive away without her.
I woke up.
I'd been screaming pretty loudly, apparently, as I'd interrupted the sleep of not just my sister but my mother as well. And I tried, through the gasping tears that were now falling down my face, to explain what had happened but I wasn't explaining it right - even to me. It was a box with hinges but we could see her and she wasn't in pain and it was my Great Aunt and then it wasn't but it turned out to be her and and and. My childhood brain was scrambled and I was too upset to make sense of what my subconscience had laid out before me.
To me, the nightmare was scary because, in my panic, it felt like *I* was the one trapped in the box. Like I was depending on someone to not let me slip away. It was too scary to talk about ... ever ... and so I never did.
To my mom, the image was scary because I'd described, in the vaguest of terms, the Electric Shock Treatments my Grandmother was receiving. My parents did all they could to never let their children know what was involved during those appointments and - well - I STILL don't know. I remember only that my mom admitted she was nervous after hearing my nightmare that I had overheard too much at some point.
To my whole family, the nightmare became downright creepy when - less than a week later - my Great Aunt passed away and they attended her funeral. I was too young to be there but years later my sister would STILL describe my nightmare as a vision of my Great Aunt's services. Everyone was dressed up and spoke in hushed tones. It was quiet and she'd noticed a large padded carpet with lots of specks of colors in it. There was a box with hinges on it, but they could see her and she wasn't in pain. Today my sister still tells me I saw that funeral before it had even happened.
And all these images came rushing back to me during an MRI, and I relived the nightmare.
I was dressed up a bit (in a dressy pair of pants and a nice top), as were most of the rest of us. My Great Aunt and my Grandmother were both very dressed up - hair done, nice shoes, etc. My Grandmother even had a small blue hat on - something I'd never actually seen her wear but I had seen photos of her wearing such a hat. I must have really liked the look to have dressed her this way in my sleep. We all walked into this building, which seemed to be a cross between something medical and something that I'd now define as spa-like.
There was a front desk and a nice lady sitting behind the desk who seemed to know who we were and why we were there. The space was large, with a metal open stairwell swirling around the room, however there didn't appear to be a second-floor, really. There was a landing area that I could see from where we were standing but there was nothing beyond it.
Without really knowing why we were there, I was told that my help was required. I was given a task - a simple one but one which I was being told was ultra-important. It was then that I noticed a box in the center of the space (and the front desk was somehow now gone). As a grown-up today, I can describe it as a single person steam box, with openings for ones head to be out at the top and hand holes on either side. It opened by lifting the side with the head opening up and then swinging open the front doors. This, however, is how I'd describe it today ... it's apparently NOT how I described it at the time of the nightmare.
Anyway by this time, my Great Aunt was in this box and her hands and head were outside as one would expect. My task, it seemed, was to hold her hand. My child self liked this task. There were, as I've shared, NUMEROUS times when she had comforted me and held my hand ... so paying the favor back was alright by me.
The rest of my family was milling about and were quietly discussing something or another - I was just beyond hearing range and they were speaking in hushed tones. My child mind imagined that they likely were impressed at the terrific job I was doing and how I was being a great help. Beaming with pride, I straightened myself up just a bit, brushed my pants down and noticed the floor I was standing on was a patch of carpet. Leaning down to look at it more carefully, I saw it was slightly padded and had specks of lots of colors in it. After I was done inspecting the floor, I stood back up and reached to hold my Great Aunt's hand ... but it didn't seem to be there.
Uh oh.
I glanced nervously at my family gathered in the room and none of them appeared to have noticed the lapse in my assignment so I turned my attention back to the box. I jammed my skinny arms into the box in an effort to find my Great Aunt's hand but nothing seemed to be there. I jumped up where I stood to see if I could ask her to put her hand back out for me to hold but couldn't see her face. But I caught a glimpse of a small blue hat.
Panic set in.
Somehow in my mistake, my Grandmother was now in this box and only I seemed to notice. I called out for help but it seemed like there was a glass wall between me and my family. They couldn't hear me and weren't noticing my movements. I tugged with all my might at the doors and latches on the box but nothing budged. The small blue hat sunk lower below the top edge of the box opening.
My Great Aunt walked around the glass wall and said, calmly and without concern, that I'd done the best I could and that she was alright. The family gathered around and blocked my view of the box, which was being wheeled away by some unseen method. We all walked outside, even though I was still loudly protesting and apologizing, and instead of the familiar yellow car my Great Aunt drove us in waiting for us in the parking lot, we all got into my Grandmother's blue Chevelle. My Great Aunt was now the one missing and my Grandmother was sitting next to me.
I was screaming at this point in the nightmare. Screaming that we couldn't just leave my Great Aunt there and that it was just a stupid mistake on my part and how I could do better if just given a chance. How she had talked to me and said she was ok and that we couldn't just drive away without her.
I woke up.
I'd been screaming pretty loudly, apparently, as I'd interrupted the sleep of not just my sister but my mother as well. And I tried, through the gasping tears that were now falling down my face, to explain what had happened but I wasn't explaining it right - even to me. It was a box with hinges but we could see her and she wasn't in pain and it was my Great Aunt and then it wasn't but it turned out to be her and and and. My childhood brain was scrambled and I was too upset to make sense of what my subconscience had laid out before me.
To me, the nightmare was scary because, in my panic, it felt like *I* was the one trapped in the box. Like I was depending on someone to not let me slip away. It was too scary to talk about ... ever ... and so I never did.
To my mom, the image was scary because I'd described, in the vaguest of terms, the Electric Shock Treatments my Grandmother was receiving. My parents did all they could to never let their children know what was involved during those appointments and - well - I STILL don't know. I remember only that my mom admitted she was nervous after hearing my nightmare that I had overheard too much at some point.
To my whole family, the nightmare became downright creepy when - less than a week later - my Great Aunt passed away and they attended her funeral. I was too young to be there but years later my sister would STILL describe my nightmare as a vision of my Great Aunt's services. Everyone was dressed up and spoke in hushed tones. It was quiet and she'd noticed a large padded carpet with lots of specks of colors in it. There was a box with hinges on it, but they could see her and she wasn't in pain. Today my sister still tells me I saw that funeral before it had even happened.
And all these images came rushing back to me during an MRI, and I relived the nightmare.
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