My Mantras: Living well after stroke is possible! Living well with Parkinson’s, brain trauma, and MS is also possible
This is my story — the reason for this website — and what it is I have to offer for survivors and their loved ones.
I have survived two neurological events . . . and returned to work . . . as a clinical psychologist, albeit very differently each time, and with a pinch of the foolhardy. With quite special help I learned over time how to pace my energy, organize time and goals to be able to do the core things I wanted to do. The essential therapies rose out of my primary interests and passions. Loving what I was doing was essential to help me recover.
As I got better, new levels of achievement, each time I had to readjust. It wasn’t just obvious how to manage more challenge. Everything felt new again, like starting over again with new how-tos. This was good actually. Looking back, a week, a month, a year, over time I could see specific changes and use them to believe in what I was doing. Changes are changes, and they meant I am recovering bit by bit. I learned to celebrate little changes and not just walk by them. It wasn’t easy to be sure. The successes kept me going and learning the ways to optimize what I could do made more change possible.
I learned in these years how passionate interests can be used to increase functioning in areas of limitation. I also learned principles of neuroplasticity, the application of neuroplasticity to everyday life.
In working in a Neuro Recovery In-Patient Service and in private practice I found that these two — passionate/interests and principles of neuroplasticity — are applicable to increasing function in other neurological conditions. These are practical ways to run more of your own life.
I earned my Ph.D. in Clinical Psychology at New York University. Five years later just as my clinical and research career was getting underway, I had a stroke in JFK as I was return from presenting my first international paper on observations of baby emotion and lost expressive language. The dream career was shattered…..what remained was what I cared about most, the work with my patients.
I lost my baby research career. In an innocent foolhardy act I returned to a small private practice. I felt eternally blessed to have patients return after many months who were very patient with my extremely slow and labored language. When I finally found speech therapy, I learned ways to mediate effort and fatigue.
Any kind of clinical work I have done has been from a developmental point of view — that is, life as it happens for an individual over time. I began watching my functioning, my difficulties and successes with my aphasia over time
I loved observing babies, intelligence as it grows over time, how strategies evolve over time, curiosity and awe. A few year after my stroke I became a volunteer professional in a cancer hospital. No one else wanted to work with preverbal babies, so I was it…..perfect for me. Observe babies in illness, tell mothers what I see…and to help them support development (and play) even when life and death were on the line.
In my world nothing is static, everything has a changing aspect or changeable aspect. That is the core principle of my coaching perspective now. It might be difficult to see change, especially from day to day, or to see what is changeable. Change may be slow or fast; limiting or growing; sometimes it feels unseeable. But it is there to use. That is what I do in my coaching practice. It is not about mental health though being discouraged and out of sorts is always an issue from time to time. My coaching is about making something good out of sometimes extremely limited functioning.
For me overdoing was a big big issue. In the enthusiasm and pleasure of the moment it was so very easy to not see where my limits were for that particular day and fall right over them. Doing what I couldn’t do. The crash of fatigue often felt like depression but wasn’t. It was my body telling me…stop, stop, stop!
Once I recovered fluency of words in my mind, I could express outwardly more easily, a major milestone! It was then I was encouraged to write and talk of my experience of stroke and aphasia…..and so I began to give public talks……..to write……..and they lead to writing the book: Without Utterance: Tales from the Other Side of Language