There's Always Something Around The Corner
How do you prepare when you don't know what you don't know?
One of the most powerful elements of storytelling is the art of suspense. The books, plays, and movies that grip us most are the ones wherein we know something big is coming for the characters we care about, but we are held in an anxious state of anticipation not knowing what it could be. We can’t wait to find out what lies around the corner, how our characters will respond, and how the whole thing will be resolved.
Life is like that, too, when you’re living with a rare disease. Think back to a time before you were diagnosed. Remember the mystery that shrouded your symptoms? The big question mark that followed you to every medical appointment? That sense of wonder as you awaited each test result?
Many of you live with that feeling every day. Your disease is not only a comma that paused aspects of your life — and maybe an exclamation point that dramatically changed it — but it’s also an ellipses marking the omission of something you had envisioned for your future.
There is always something around the corner, even for those who aren’t living with a rare disease. For example, like everyone reading this, the 2020 I had mapped out in my head was very different from the one that played out. We all had to work our way through the response and bring what elements we could to resolution. You’re still likely working through that story. I know I am.
I’m also working through some unknowns with my disease. Just this week I met with a pulmonologist to determine the cause of some worsening issues I think are associated with MG. We are going down a path of discovery and will hopefully have some answers (and thus some resolution) soon. In the meantime, I wonder what’s around the corner.
The anticipation that accompanies the lack of knowledge about the future can cause anxiety. How we deal with that anxiety can impact how our future is shaped. Physical outcomes, and our mental state walking the path toward them, bear the marks of the cargo we carry on our journey. It’s important for us to manage that cargo carefully.
How do you deal with the uncertainty of tomorrow? What life hacks, support systems, or care routines have you put into place to give you strength in the face of a blank slate? There could be setbacks around the corner, or your best days ever could begin to unfold tomorrow morning. It’s the lack of knowing that keeps us on edge. Use the button below to share your story with me. I want to hear your approach.
One of the hardest parts of the pandemic has been postponing family gatherings. Those in a more compromised physical condition have had to take extreme precautions to limit potential exposure, and this has often meant seeing less of our relatives and friends. As more people are vaccinated and infection rates decline, I’m looking forward to being in a house full of family to celebrate holidays and life in general.
In fact, I can’t wait to host a gathering myself, sending out the invitation made popular by Bill Monroe and recreated here in this wonderful rendition by Gillian Welch and Dave Rawlings. Y’all Come!
The Rare Mind
Routine brings order to our world. Even when everything around us seems chaotic, we can find personal strength and a sense of control by building routines into our lives. I personally struggle with this. I have more ideas than I could ever possibly execute on, and therefore tend to become distracted from things I’m already committed to. Hal Elrod’s The Miracle Morning has been helpful. Granted, I haven’t fully implemented his system (I got distracted, okay?), but I’m working on it. Hal’s personal story is remarkable; a car crash that left him dead for six minutes and an unbelievable fight with cancer forged the person he is today and informed the philosophy that has not only helped him build the life he wanted but has helped thousands of others as well.
The Rare Body
For some people living with a rare disease, the search for treatment options is a constant challenge. Enter myTomorrows.
“Clinical trials continuously face difficulties enrolling enough patients. On the other hand, there are so many patients and physicians looking for treatment options. myTomorrows is the platform that helps both patients, physicians AND clinical trial teams. For clinical trial teams, myTomorrows helps with enrollment. For patients that can’t enroll in trials, myTomorrows offers expanded access.”
Read the full article about how myTomorrow works with patients, health care professionals, and pharma, and how real-world data is making a difference in patients’ lives. A shout-out to Erin Moriarty Wade for sharing this story with me.
The Rare Spirit
She’s known as Dr. Jen on Twitter. That’s where I came across this insightful message:
And then I discovered she had a new book coming out, which was published earlier this week. I don’t now about you, but this rare disease patient could use a few “easy meditations to short-circuit stress.” I’m looking forward to reading this! Use this link to order your copy of Quick Calm.2
Know of any resources that would be a good fit for this section? Please share!
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