I came across this post by Megan Devine in Tim Lawrence’s Twitter feed & it really spoke to me. Partially because it’s something I’ve struggled with in sharing my own reality inside the doctor’s office & outside of it from time to time. I know I posted about Tim’s great post on platitudes, but this piece from Megan also had me thinking when I came across it last night.
This is especially true in a leadership & social media space (mainly in closed & open support groups).
The first time I was gravely ill in a period between 2006-2009, just before I started Rapamune. I was still fighting to hold on to volunteering in the early part of those years. I was starting to feel worn down & beat up not only from my illnesses but I was also feeling frustrated at what I deemed as a lack of accomplishment in developing resources for adults with TSC. I also was hearing more & more stories of truly hard & scary experiences behind closed doors. People were clamoring for more research, more help.
I was at a loss & felt like a failure in not being able to bring that to pass for them, even though I knew realistically it wasn’t just my problem to “solve” or to “fix”.
I was also being worn down by LAM. My lung function was still so-so (high 40s or about half) & I was not on oxygen, but I had about 5 lung collapses by then. The one, a total collapse of my right lung, in 2006 had tried to kill me because it had developed into a tension collapse that had a build up of pressure compressing on the lung after it collapsed. Had I not realized what was going on, it could very well have. I was feeling like time was of the essence & that it may be running out for me, literally.
2008 was an extremely rough year for me. The weight of my own mortality & others was sinking in to a large degree. In December, I lost a volunteer mentor to cancer, my friend & college internship leader to muscular dystrophy, & one of my best friends to LAM & TSC. I knew about the other two. I found about the 3rd reading it on The LAM Foundation website seeing her name appear under the “in memory” section there.
I was shocked. I knew something was wrong. But since we both were in & out of the hospital so much I couldn’t put a finger on it until then. A google search came up with her having passed at least 3 weeks before. Nobody from her family contacted me, even though her sisters knew me. She & I were extremely close. I don’t blame them, but that’s certainly not the way to find out a friend had died.
All of this though & more, I kept locked away, just below the surface. I put on my perpetually positive face & kept going. I felt I had no choice. Yet, after a time it didn’t feel honest. Even researchers who had become like friends to me (since we had spent so much time together over the years) could see the pain hiding behind my eyes. Having them see that was too much for me. I went into “retirement” & relative hiding from my volunteer communities to deal with this in peace & on my own.
Then the Rapamune took effect. I felt better, but yet I stayed behind the scenes. Not quite ready to dive back in. I wanted to be selfish & give back but also have a life & time to myself which I had not really allowed myself to do in the past. Yet, there was a nagging feeling. Bit by bit, though I did a little volunteering here & there. Mainly in one-to-one situations, or behind closed doors/groups when people started talking about certain subjects, or in research peer-review panels.
When I became sick again this spring, I realized what that nagging feeling was. I was an authentic person, still am. Yet, I felt inauthentic because while my battle worsened, I couldn’t deny the cries in the dark of those with a similar experience & similar pain. I couldn’t shrug them off. I felt ashamed that I had not spoken to their pain earlier when I had been in that place myself. The staff of both my support communities never made me feel this way (I feel that’s important to point out), it was other factors.
Somewhere, along the way, lost in this mess I had told myself or something had told me that in order to remain positive I had to deny the full reality of what was happening to me & my body. I know this is a lie, yet this is why I struggled for so many years in silence. Yet, as a leader, by doing so, & being ashamed of my own journey, struggles, & pain I had done a great disservice to others in the process.
Just because I admit my journey gets hard, dark, & scary doesn’t make me negative. Just because I understand why others feel defeated, frustrated, scared, & upset at the pace of change doesn’t make me negative. What makes me negative & what weakens me (& my leadership ability) is the callous disregard & denial of other’s less-than-positive experiences at the hands of these two diseases.
In a way, it’s just as bad as sugar-coating I would rail against. Or the “pollyanna-isms” I used to tell myself & others to “push through” & “push past”. I don’t dwell, but I do find when I deny the hardship in any way, it actually intensifies. That is what leads me to a negative place with negative thoughts.
Therefore, my reality is acknowledging my journey as a whole. Then, now, & everywhere in between. It’s acknowledging my greatest fears, which I might add, my journey as a whole confirms for some people within my communities. But that acknowledgement can only make me stronger because I am embracing my full truth. Especially when I open my heart & ears to kindred spirits I find along the way, seeking to do the same thing. To come to terms with an awful situation, find a way to deal with it, & the realities it presents.
I am thankful I don’t have to bear this burden alone, never have. I’ve had friends who have worked for years trying to tell me these exact things about keeping this stuff locked away. Yet, it just didn’t seem to “click” for me until recently. The saying is true, “we are only as sick as our secrets.”
Like most people, even when I have altruistic means & ideals, I am fallible & human. I make mistakes. Yet, the one thing I can change is the ability to acknowledge the stories of those around me (as well as my own). There is no success, no failure. No positive or negative. Only journeys & walks. All of them are important. All of them matter equally. All of them foster growth.
Just because someone admits life is hard or that their journey is difficult doesn’t make them negative. Telling their truth is not a negative thing, nor should anyone ever be made to feel, especially within the communities they reach out to for support, that it is.