I should be writing this post from California, but I’m not.
This week there were so many reasons for me to be in California. The first started on Friday morning–when Global Genes started their Patient Advocacy Summit. I watched it on my phone on the way to an echocardiogram at the hospital. After they’d strapped on all of the leads (which later left giant red welts all over my chest) they told me that scheduling had messed up, and the cardiologist wasn’t coming. Angry, and with my skin stinging, I marched out to the parking lot trying to get the Livestream feed to play back on my iPhone–but it wouldn’t work.
Saturday night was Global Gene’s Second Annual Tribute to Champions of Hope Gala. As the managing editor of their blog, and with a room full of my own personal heroes–I should have been there, but instead I was napping in my apartment, waiting for R.J to get home so we could grab something to eat early, so that he could pack for his trip in the morning.
Which brings us to reason three why I should be in California– R.J is right now. His work sent him our for a week-long conference in San Francisco. He just called to give me the breakdown of his flight and hotel room. He said he even saw the Golden Gate Bridge from the cab.
And I’ve had a lot of time to soak this in, by the way.
Nicole told me in our first strategy meeting over the phone in February that there would be a summit and a gala–and she hoped I would come. Even though at that point my health didn’t look like it was improving–I hoped for the same. After my trip to Texas in early March I became even more discouraged about traveling, having come back much worse for wear and perplexed as to how I would ever survive another three hour plane ride, let alone a six hour one to the west coast.
R.J told me about his work trip a few weeks back, but I immediately nixed the idea of joining him, having already run over the mountain of reasons why I couldn’t go for the gala.
Then in the summer came the hypersomnia diagnosis, and the xyrem, and the getting off xyrem, and the beta blockers not working— Just shelving the complete anxiety of travel, the logistics of it weren’t looking to sturdy either.
Why haven’t they found a way to teleport yet? I wish I could just “pop in” to these events, “pop in” to San Francisco to have dinner with my fiance. “Pop in” to my doctor’s office when I need my IV and “pop” back out to the other side of the country as soon as they put on the cotton tape.
This is really a multifaceted failure for me. There are just so many levels on which this sucks: the part where I’m incredibly disappointed in myself for not being with R.J, and sad that he’s navigating this new city alone and without me by his side. I’m heartbroken not to have had the chance to shake hands with all of the leaders and heroes in the rare disease community–and furious that today is actually a “good day” but because I didn’t know it was coming–I took the safe chance of not going.
It’s one of those days where my world just feels smaller and smaller…and I know that it’s going to be sooner rather than later that I’ll have to start getting in planes and trains and cars and sucking up whatever symptoms or just plain anxiety I have (usually about having symptoms, and not being “in control” enough to do anything about them.) But at the end of the day,whether I’m in sleeping in a hotel in San Francisco or a hospital bed in Boca–I don’t have any control over my symptoms. Hell, I never really did.
I skyped with R.J earlier and he told me about the Chinese restaurant that he fell in love with and the city transportation. He didn’t think I would like it too much there because there was “a lot of walking, like uphill walking.” But he said that when my heart got better, we should come back together and give it a try. And I’d really like that.
As I work on my book and hope that I’m maybe an inch closer than I was yesterday to getting it published–I’m starting to envision myself going on a book tour next summer. I’m manifesting the chance/commitment by force to have to travel to new states and explore new neighborhoods and to make my world a little less small.
Today it just feels like it’s closing in and I feel an incredible sense of robbery from my illness. Wondering what this entry would have read like if it’d started out, “I made it to California, Golden Gate and Galas? Here we come.”
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