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.


Anniversaries. We all have our anniversaries. Some that are happy—birthdays, graduations, life victories—and some that are sad—passing of loved ones, break-ups, traumatic endings, to name a few. I admire those people in life who endure their bittersweet anniversaries by powering through them. They are the ones who don’t dwell on the past, but immerse themselves in the present. I envy that quality. 

Me? I look back. I remember the colors, the faces, the smells, the sounds. In my mind I visit it like an old friend. An old friend where an unsolved crime took place; while you’re visiting you’re constantly scanning and re-scanning for missed clues. Or previously discarded clues that now have new relevance with the latest context. My problem is that the more time passes, the more memories are formed. It’s almost like an odd Physics project; the volume becomes denser, yet in terms of relativity, no memory is farther away or closer, greater or smaller than the others; they are just there. (You can tell I have been watching the Science channel recently…). 

For me, my anniversary is the season of summer. It will forever mark when my life took an undeniable turn a decade and a half ago now, and I lost all my physical strength, culminating in only being able to move one finger and blink my eyes. And still, never knowing what caused it to occur, to continue to change. 

Perhaps because I was raised in Texas and the hot summer was the three month break in the school year, summer was always the time for change, growth and renewal. It was the time of year when routines would change, new goals would be made, and old goals revised. New Years resolutions had nothing on my summer goals. Yet, for the past 15 years, summer has become more of a noose around my soul than a benchmark. So much has been the same. There have been alternations in the path, minor changes, a lot of revelations, but essentially, the same questions are still there from when I first got sick as a teenager. 

And that is maddening. And despairing. 

Yet, I refuse to swallow that for long. I mean, really. Summer may become my own time of stealing private moments of brooding, mourning, and absolute fury, but it is unfair of me to give it the whole season. With discipline and perspective I fight to compartmentalize and give me happy moments, memories, and days. 

Time doesn’t make it any easier. Everyone told me that in the first few years. “Time will make it easier; after the first anniversary, the second, the third, you won’t find it as difficult.” Everyone was wrong, in my opinion. The expression, “there’s a lot of water under the bridge”, in context of time passing applies here, I think. There’s not just a lot of water under my bridge; there’s a whole dam. 

I think time only helps if you can ever get off the bridge. If you can, than I would like to believe that time will make it easier. 

If I can ever get off of mine, I will gladly let you know if this is so. In the meantime, I simply take my summer of anniversaries in my own fashion, with sarcasm, wariness, a smile as a shield, and stolen moments for my mind to go a visiting, and scarcely dare to hope I will uncover a previously missed clue. 


Camelot, The Star

Camelot, The Star

Jumping the Wall

Jumping the Wall