Sometimes my brain does not work very well
It can be difficult to think. The will is there but the mind is heavy, distant.
'Brain fog' is a symptom commonly experienced by people with a chronic illness, and it can mean many things: difficulty thinking clearly, poor concentration, cognitive fatigue, the sense of fighting through a haze. It is a disturbing and dissociative experience. Since my diagnosis with multiple sclerosis (MS), it is an experience I have too often – and what to do with this?
This blog was originally conceived of as personal project to help me find my way on the bad days – a challenge: when it feels like I can do nothing, do something.
But this site is also an experiment: an exploration of the self and the mind, of neuroscience and research and illness, of change and loss and healing, and of the connections and connections that weave it all together.
These are some of the goals:
1. Create a space for others to find support.
Illness is lonely. It is a battle waged between your body and yourself, and fighting that battle drains your energy and draws you away from the World of the Healthy.
Over the past few months, I have found much comfort and support by reading other people's stories. These online forums and blogs have also provided me with helpful information and reassurances about medical procedures, medication side effects, and symptom management.
By sharing my experiences, I hope to add another sympathetic voice to the mix. There are also many topics that I want to know more about- i.e. the relationship between anti-TNF therapy and demyelination, the causes and manifestations of paraesthesia, or how heat worsens neurological symptoms - and I hope to contribute to these topics for myself and for others.
2. Bridge the gap between patient experience - clinical practice/applied research - basic research.
As a child who suffered from severe asthma and Crohns Disease, I grew up in and out of hospitals and clinics. For many years my health was stable, and I could pursue studies that interested me - in psychology, philosophy, and neuroscience. I recently began graduate studies in neuroscience, and have been working in a genetics and clinical biochemistry laboratory, learning how things work from the research end. This time, as I return to the role of the patient, it is with more information and insights. As a patient, I feel a gap between what I want and need from my healthcare providers versus the information and resources they provide.
I am interested in (a) exploring what this gap is (i.e can I identify what components are missing or ways the system could improve), and (b) tracing the path from basic research to drug development to my body (i.e. what is this medication I am taking, how does it work and what is and is not known about it?).
Additionally, I believe we need to improve the flow of information from the clinic to the lab. How can scientists better use clinical data to refine and explore the most important research questions for the patients?
3. For myself.
Writing forces me to articulate my thoughts - and lately my thoughts have been all over the place. It also challenges me to look at my experiences from another perspective, and place my story within a larger context. And most importantly, it is a way to connect to others, to speak to you the reader.