One of my favorite music artists of all time is Billy Joel. In part it is because I'm that old and in part it is because some things are ageless and I've found a lot of what he has sung about has summed up what I was thinking and feeling. In this past year since I began the journey from symptoms to diagnosis to learning to live again, I've struggled with trust. And the song, "A Matter of Trust" has played repeatedly in my mind. Now before you get too far ahead of me. I'm not talking about bad or good relationships with a significant other. I am talking about how passionate living begins shifts and what you have to do in the midst of it. I think that what has happened to me is a deeper sense of being able to trust.
My struggle has not been around trust but vulnerability. I don't have a problem wiht the act of trusting or the fear of being betrayed. I've had to trust a lot around some things that are bigger than me. My MS is bigger than me and it has been frightening. I've had so much stripped away. But when I have trusted, I've been reassured and the trust has been a light (sometimes timid and at other times bold) that my journey has demanded.
I have had to self-disclose repeatedly. This is not comfortable. I've talked about symptoms of disease and pain, not strengths. I've submitted to health testing, I've been poked, prodded, sliced, diced, imaged, biopsied, stuck, bleeded (you know the drill)... There's not much left that's private.
I have always like my privacy and quiet places. In part, it's because the worlds I created were safe. This is kind of odd when you think about it as I'm an extrovert in most things and love being with, around and in relationship with people. I'm sure that there's some deep, psychological mystery there... I learned that privacy and isolation don't always give us what is needed.
In the past year, I've had to trust doctors, nurses and other healthcare experts. My trust has not been misplaced. I've had a successful journey with cancer and it seems to been taken care of appropriately. This doesn't mean that I trusted blindly - they had to earn my trust. I used every bit of my intuitive skills, tough questioning and networking. Those skills I had. There was a lot of prayer, an outstanding counselor, a great nurse navigator and a skilled surgeon. The trust has not been misplaced.
With MS, my journey has been rockier. In part, it's because I'm having more trouble trusting myself. My body is no longer doing things the way it used to (surprise). How I understand myself has changed. I wonder at times how accurate my perceptions are due to depression, medications, fatigue etc.
In my journey to where I am today, my biggest struggle has been around a phrase that I resisted and did not like. It did become a big help. It's "letting go" (based on Mindfulness training). I had trouble with this. I could let go of certain things. But letting go of myself was troublesome. It was like "prying off dead, cold, stony fingers". I had to let go of something precious. The illusion that I could control things. I thought that my level of control defined me for the good. It wasn't a bad thing. But letting go would mean a new level of vulnerability that I needed.
I took a risk. In the end, it wasn't that bad. As a matter of a fact, the risking drew more people to me and me to them. Trusting brought me to a better place.
Before you take this wrongly, I'm not talking about trust that is stupid. Trust has to have some smarts about it - that's why I still like having my wonderful advocates, my questioning nature and a desire to test things out.
The vulnerability and trusting I have done has brought a healing to my dry soul and spirit. Yes, my identity has shifted. I'm David with MS. I'm also a David more able to trust others. I'm able to trust in God in new ways I did not know that I needed. I'm also trusting a community of faithful persons with something I took great pride in - taking care of me. My MS showed me that "taking care of me" is an illusion. It was a prison of razor wire and fences. Trusting brought new life and energy.
An MSer's tendency toward isolation is something that I observed and read about at the beginning of my journey. I did not choose that pathway. I believe it's time to leave that razor wire behind and to be freer than I've been before.