the truth is, we’ll probably never know

I remember, as a young person, thinking that we never really know what our contribution to this life might be. That somewhere, there might have been a conversation that encouraged Mozart’s mother not to terminate her pregnancy, or the disappointing Christmas gift that led a great inventor to make something new out of something unsatisfactory…

These last many years, I wonder what brought on my illness. There is a camp that says it is medical and beyond my control. There is a camp that says it is entirely within my control. Some say it’s my thoughts, some blame childhood anger. Some might say environmental toxins (and I’d like to be clear here that I believe so much of the chronic illness in the US is based on the chemicals in our general food supply, and the food habits marketing has driven us towards – I think the impact of so many chemicals and additives that were studied for maybe 5 years are now showing long-term effects on public health, but i digress).

I’ve cleaned up a lot of my sadness, anger and lack of safety as a kid. Or at least I thought I did. I definitely undertook it with newfound seriousness when I got ill and releasing long-harbored feelings might make me well. I released a lot of feelings. I am not well. I am a bit disappointed.

Today it occurred to me that as a kid I used to think i needed to perform to be worthy of love. I’d do my siblings’ chores, make dinner, get good grades. And then, I, like millions of other women, realized that my myriad activities came from an underlying belief in unworthiness. Obviously that paradigm needed to shift, but I may have taken things too far.

Today, I tried to stand up and walk and couldn’t. The walking sticks i have been using for stability and just that little extra power were 5 or 6 feet away. I couldn’t get them by myself. I tried for a full 5 minutes (and gained maybe 12 inches) before calling out for help.

I am extremely lucky that my husband makes me feel loved and valued *even when I cannot do anything.* Did I need to prove to myself that I was worthy of love not based on any kind of doing? Because that is exactly the situation now, and I’ve got to tell you, I think there might have been an easier way to get this lesson across.

In general, I am a pretty pleasant person to be around. I encourage my husband and kids, give them an ear or shoulder (and I’m getting better at just shutting up and being an ear or shoulder), advocate for choosing from possibility instead of fear. I think I’ve helped at a couple of critical moments for each of them. But, my¬†physical contributions to their wellness have been declining and have come down to virtually nothing. And when I do try to make dinner, I often have to stop because my knees simply can’t hold me up anymore.

It sucks.

You know that I appreciate the many luxuries that being slow and being immobile have brought into my life (mostly that i get to read a lot, but also that i don’t have to do many of the obligatory junk so many people are saddled with), but that doesn’t mean this doesn’t suck, too.

And the worst part about it is thinking that it is very possible this illness is a result of my bad decisions, subconscious scheming and/or hidden emotional resentments (i’ve found most of the not-hidden ones). That i’ve done this to my husband and kids. We would have such a different life if I were mobile. I am so glad we took that trip when I was well.

This week I’ve had several people let me know their theory for my recovery. A doctor who advocates not just DMARDS but also low-dose chemo, a regular preventative antibiotic schedule and list of vaccines. A fan of an author that cured autoimmune through diet (i’ll bet her RA factor and CCP numbers were a fraction of what mine are), a trauma-oriented healer who is certain I have multiple hidden things, some going back generations… Are any of them correct? Are all of them correct?

Really, all I can do is my best. I’m very happy to have a much cleaner diet than I used to and excited to get back to an even cleaner version. I enjoy gong baths and hypnosis and emotional healing techniques. I aspire to get back to tai chi or yoga or something. But my heart turns inside out when i think i’ve just been being selfish and commanding attention and it’s my unevolved self running the show and putting those i love through a compromised life. That breaks my heart.

But, it’s just a thought. Just like the thought that this illness is a gift to re-orient our priorities and it’s done a bang-up job. That’s just another thought.