I Am Still Myself

Spring Flare up | Part 1

One of my greatest fears after learning I have multiple sclerosis was the possibility of cognitive changes.

I remember reading a story once about a pastor's wife who was diagnosed with MS and as the disease progressed it changed her personality so completely that she could no longer operate in the same capacity. Her husband had to step down from his position because of it. She had been warm and compassionate and deeply present for the people around her and then gradually she simply was not that person anymore. Through no fault of her own the progression took something from her that she could not get back. Something about that story settled into me and stayed.

A couple of years ago a client came to me after her therapist had gone through what she described as a marked and abrupt change in personality. She did not know what her therapist was going through but she knew something was wrong because the person sitting across from her no longer felt like the same person. As she described it I felt that familiar fear move through me again. The quiet question I have never been fully able to silence. What if that becomes me.

I am currently in the middle of a flareup. It has been concentrated on the left side of my body and the best way I can describe it is that my skin feels like raw meat. Sensitive to the touch, painful without being touched, swollen and numb and inflamed all at the same time. It has been going on for weeks and it follows a flareup that started in December and never fully resolved. Flareup on top of flareup. I am on steroid treatment now and if that does not work the next step is an infusion.

The pain has affected my mental health in ways that are difficult to articulate cleanly. There have been days when I have had to cancel sessions because sitting upright felt like more than I could manage. There have been other days when I pressed through and found my thoughts drifting in session, pulling me just slightly away from the sharp intuitive presence I expect from myself. It does not happen often but when it does that fear surfaces again. What if this is the beginning of something I will not be able to control.

Outside of session I find myself more easily irritated by things that would normally roll off me. I think more about my mortality. I think about the quality of my life. And I become acutely aware of my aloneness in a way that does not usually bother me.

I want to be careful with that word because I am not without support. I have people who check in, people I can text, people who care about what I am going through. But having that does not change the isolation of living inside a body that no one else inhabits. There is an internal world of physical and emotional and sometimes spiritual experience that is entirely mine. No one else feels what I feel when I feel it. I often do not have the energy to explain it even when I want to and there is something about that that sits heavy in a particular way.

I joined several MS Facebook groups after my diagnosis looking for community and information. I ended up leaving all of them. The tone felt weighted with complaint in a way that left me more depressed than before I arrived. I did not want to commiserate. I was already struggling and I did not want to add to it.

I have thought about why complaint bothers me and I think I finally understand it. I only complain about things I believe can be resolved. Complaint for me is a signal that I recognize a problem with a possible solution that is not being addressed. Once I accept that something cannot be fixed I stop complaining about it because I no longer see the point. MS falls into that category. There is no resolution. There is only management. And so I do not complain about it. I just live inside it.

Writing has become the way I bear witness to that living. Not as complaint. Just as a record that I was here, that I felt this, that I moved through it as honestly as I could.

What scares me most in seasons like this one is not the pain itself. It is the moments when I notice myself struggling to articulate a thought the way I used to. When I feel myself rambling before I find the point. When I sense that I am not as sharp or as present as I have always been. I am aware that pain does that — to anyone, with or without MS. But I also know my own baseline and when I drift from it I notice and when I notice the fear comes with it.

I write partly because of that fear. Because I want to stay in contact with my own mind for as long as I can. Because putting words to experience is how I have always known I was still myself.

I am still myself. I just want to make sure I keep finding evidence of that.

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