One of the lessons out of the AVM rupture/resection/recovery/failures/therapy process over the past nine months has been that in an instant life can change in ways that we couldn’t have ever imagined. Movies and books almost never talk about injuries so hidden and subtle, yet so real, that they never cross our minds. Programs for those injuries never collect funding for research and treatment at even the best hospitals. Patients–and their caregivers–ever wonder if life will ever feel normal, whatever that is now or was before. Therapy and support becomes sparse or altogether absent, making the recovery all the harder.

Sabrina Strawn, the wife of a patient at TIRR explained her own predicament:

Among the many things I don’t understand is how, if a person is improving all the time, and a payor will pay, therapy ends. Mark’s fastest improvement will be in these first two years, so I’m eager for therapy to continue. At the same time, I recognize that the real world, as strange as it is and unlike the one we knew before, has come. Therapy will end at some point and living on our own in this new world begins.

It’s strange–and for some people in some situations downright scary–not being able to even imagine what’s coming next.