After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

Dreams, Fantasies and Something In Between

Dreams, Fantasies and Something In Between

When I was younger, (and healthy), I decided, no matter the career or path I took, I really wanted to be what Disney called, an Imagineer. Creating a dream. It would be cool to work for Disney, but I didn’t want to limit myself to that. I just wanted to live my life creating something imagined. Personally or professionally, it didn’t matter.


The combination of big picture with minute details fascinated and satisfied me.
With a body that keeps me housebound with limited physical options, this desire probably could never be put to better use. From thinking of diverse activities that double as a therapeutic requirement and something I would enjoy doing, to finding something colorful in the darkest of moments, being an Imagineer works for me.


As it’s in the summer heat of August, it always reminds me—and I, in turn, others—one of my favorite imagineered projects yet to come to fruition.


Are you ready for it?


A giant slip and slide, without the slip, of course.


Picture it. I have this lovely mini steep hill in the back yard with a long slight angle slope that covers a little under an acre of grass. We’ll have massive tarps lathered with suds (I have been told either baby’s oil or floor cleaning products work very well. Before I decide further research with mini tests will be done.), and probably two or three hoses of water for our current.
It will be awesome.


As that really is the imagined part, the engineering requirement will include some of the practicality requirements my mother has stipulated must be addressed. For example, since I am not vertical and the “slipping” part is out of the equation, the “slide” will be done with someone pulling me. As I have little muscle, and well, delicate joints, my mother has decried I cannot directly be pulled to protect me from injury.


Personally, I think that’s slightly unrealistic, but, in thought of the bigger picture, solved that problem by procuring permission from a friend to borrow a giant inner tube that whomever can pull, bringing me right along! (In truth, I actually have a few different people in reserve for this--just in case.)


The next objection she had was my oxygen requirement. Really! I think I could be off oxygen for the 5-20 seconds (or however long this goes; what an enticing thought!), but given that there could be an exertion, my mother requires even in the dreaming stages that I have to solve this.
This has proved to be a slight challenge. As my big, regular oxygen concentrator would be a pain to trail along with me (read that as someone having to run with it), and my portable oxygen can not get wet. I am a big believer in delegating. Thankfully I have a cousin who knows all things of rigorous outdoor sports and rescue, and is looking into the oxygen dilemma.


Do we have a firm time line or date? Absolutely not. I have been wanting this for 4 years, and every year it is delayed until I am “just a little stronger”. In that, the dreaming time is not only free, it’s fun. Fun to imagine the fabulous day it will be, and the party I would turn it into. I can’t do many activities, and for this, a lot of my friends and loved ones would show up. (In truth, some would come for the fun of it, and others to bring wine for my mother in solidarity of the craziness she has to live with.)


Ridiculous? Yes, that too. But it also provides an important Imagineer (as I use it), function: a positive escape with just enough of a thin chance of reality to ever occur to keep it from being a complete fantasy.


I do this on good days, and a lot more when I get hard news. Like right now. Recently I learned recently that my medical case was rejected from the top undiagnosed medical clinic in the U.S. The team concluded after a thorough review, that I would not meet their criteria of likely chance of either being solved or adding knowledge to the rare disease community. In short, it came down to statistics, as positive results boost funding, which is critical to their operations.


 I need to be angry about it. But I’m not…yet. It’s an ice pick to the heart. It limits forward looking dreams / fantasies even more. If my mind even points its toe in that direction, it sinks into the Black Hole denser than tar. I know despair; I know acute disappointment.


But I also know me. I can only live in a world of color, in a world with something to look forward to.


So I have my Imagineer projects, my slip and slide party fantasies (with no slip), my daily hobbies, my side kick Camelot.


Another day, I’ll tell you about my Imagineer project for a recumbent zip line across my backyard….Now, that is a real doozy! (And a serious case where just the Imagineering stage includes wine for my mother…Hehe.)

Unexpected Drama

Unexpected Drama

Gardening, Anyone? 

Gardening, Anyone?