Unpredictable and completely contrary to just about all expectations at times, yes. We get some rough patches that even linger indefinitely.

Been there, done that. Repeatedly. (Repetition’s great–mean’s the show’s still on.)

What has been really key in managing the severe etiological, and at times extremely aggressive-in-robbing-functions manifestation of NF2 in my life, has oftentimes meant to NOT try to assert fixes, or intervene in a way that makes a change only because things weren’t working “the way they should.” (This is even generally applicable to life, so feel free to extrapolate like that! I’m happy to be back in general and specific territory in a complimenary way.)

But even when extra corrective intervention is taken to “fix” after-effects of something that persists after surgery, or in the continuing presence of tumors, the body is just even more overloaded trying to maintain and repair itself.

I did have a few surgeries after which I came out in way worse shape than what I had been in before them. It wasn’t something that could be fixed by more surgery, though, which is pretty common for just about everyone.

Sometimes the fix comes only after a process of acceptance, adaptation, and then gradual biological recovery. I encourage other folks to give their body a chance, and see what it may do before throwing in more variables for it to accommodate.

I know right now I’m in this moment, and all the weight of the chronic fatigue and various functional limitations doesn’t get communicated. The extent of the physical strain on my body was immense at times. Totally experiential, and just something I took part and partial with existence. (Life is a gift, a privilege. What gives us a right to set conditions of existence–beyond basic human rights?) You make the best of it, you know. Do the best you can with what you’ve got to work with, at any particular time and place. Millions of others have, too. But what I’m saying here for NF2, especially, is that I have totally found that the optimal proactive approach in treating NF2 is to respect the unique ways in which it manifests in each individual. I know we’ve got natural history study data to mine, that will hopefully help guide us even better in the near future. Hopefully we’ll use it!

Sometimes tumors really do just spin out of control in growth. But timing… Perhaps by not catalyzing changes at an accellerated pace allows the body to generate its own regulations. Naturally.

I fully realize I’m tremendously blessed to have experienced functional losses and gains, all unexpected, across such a huge spectrum. I want others to access the capacity to do the same. And learn about themselves and life in the process. Why else are we here?

A life so experientially rich, when one gets beyond trying to force it into being what one thinks one wants, instead of what it just is.

Yes, I’m happy about allowing it all to be what it is. What an empowering choice.