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.

Hope

If Hope were a man, we’d have a very passionate relationship. You know the kind, volatile. Throwing things at each other and yelling at the top of our lungs, or spooning and being all sappy-happy. There would be no in-between. 

Yet, it’s in the valley between those peaks where happiness, or at least sustained, peaceful contentment can be found. And I am still learning how to reach that with Hope. “There’s always hope”, kind, well-meaning souls tell me. My closest know when they say that to me that I will instinctively roll my eyes and pucker my lips, swallowing the hostile words just wanting, waiting, dancing in my mouth. 

It always surprises people that I meet, somehow learning my less-than-stellar thoughts on Hope. Apparently, I can come across as quite lively—joyful even, I would like to think—spiced with moxie and sarcasm. And that’s how I choose. I would like to believe I live life with as much productive and dynamic energy as I can wrangle from my body. 

But with Hope? It’s just the feeling one has with the lover that “did you wrong.”  When I first got sick, I was left with 10% lung capacity, couldn't move, couldn't utter discernible words, and I was full of certainty this would be a passing phase of my life story, a mere blip in my high school era. Hope wasn’t even necessary. Then, in time’s cruel season of illustrating that the “blip phase” had passed me by, Hope became my daily partner, keeping me stalwart in going forward, even if that meant dragging my bones along. 

As frequently happens with partners, there came the time I felt utterly betrayed; abandoned. Being a relationship worth keeping, I had to work through the hurt and loss of innocence to discern my part of the failing. Once again, we tentatively went forward, and were even partners when I got my cancer diagnosis. It was a rallying call for Hope; not only to beat the cancer, but to finally walk again, and dare we say it, hope to run again. 

For a few years, Hope and I kept up a good façade even as the possibilities dwindled. Then, like a last-ditch effort of going to couples therapy, I parlayed with top medical institutions. “Hope” being the word du jour. I gave it my all, and came out utterly disenchanted. 

It wasn’t Hopes fault, exactly. It just couldn’t help being glistening optimistic. But I sure as hell could. Why? Why do I feel so strongly I must protect myself against such a glowing light? Because when it leads me over a cliff, I come crashing down. And unlike Wiley Coyote, one of my favorite Looney Toons, I do not bounce back up as easily.

So, Hope and I have learned to coexist, albeit in estrangement. Sticking to the relationship metaphor, Hope is allowed in the house but relegated to a closet (albeit a very nice one). The glow under the door at the end of the hall when it is black as night, is a comfort, a reminder, that all is not yet quite lost. Though, also a reminder, that I do not want to throw open the doors again, allowing the light to shine so bright I loose all perspective and rationale, allowing Hope to make my future.

That said, it’s Christmas time, when Hope is making a ruckus to break out of the closet. It can’t help itself. Perhaps in triple dose, I feel it’s affects most acutely this season after being featured in an article by Gina DeWink , “All She Wants For Christmas Is to Find Someone with Matching Symptoms”.  If you haven’t read it yet, I hope you will, as Gina did a fabulous job of summarizing my journey thus far. 

(Don’t worry, a blog post will be coming about how that all came about. I just have to get to the place where I can emotionally share about it.) The resulting letters and responses I have gotten thus far because of the article have overwhelmed me. 

Have I yet to hear from someone with an identical case? Not yet, though there are several who have a lot of similarities, have shared knowledge with me, as well as a lot of offerings of help. 

What the responses have given me most though, is hope that I am not alone in the struggle of fighting for a diagnosis. So many letters I have received include phrases such as, “I completely understand your frustration…” and “it took me years before I was diagnosed”. In reading their courage and determination to fight for their own answers, it has helped sustain my own. 

And in that, I have been given my Christmas wish. 

One of the questions Gina asked me in the interviewing process was what did I hope for. I didn’t go into my answer like I did in this post, but, much more succinctly, answered, “I hope to know what to hope for.” Perhaps, when I know that, I can let Hope out of confinement...!

Until then, thank you for helping keep Hope’s light glowing down the hall.

 

 

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