On July 20, 2022, I was in the best shape of my life.

My friend captured a photo of me on horseback, with a big smile on my face. The next day I went to the beach, but had a headache, and no appetite, a rare occurrence for me.

The morning of July 22, and the month that followed it, I have no memory of.  According to my husband, when I woke up to go to work, I did not make any sense and had no balance. He brought me to the local emergency room where they did a head CT and decided that I needed a higher level of care. I was then transferred to a Boston hospital where I was in an ICU for the following month.

I remember waking up and my sister telling me that I was in the hospital. I was unable to move anything but a toe and I couldn’t speak above a whisper.

Extensive infectious, autoimmune, and neurological testing was performed to try and diagnose me. Including repeated cerebrospinal fluid analysis, viral PCR panels, autoimmune encephalitis studies, and screening for tick-borne and arboviral diseases.

A week later was transferred to acute rehab where I remained for another five weeks. My diagnosis for Powassan encephalitis was told to me once I arrived.

Once I was transferred home I still required significant assistance to even roll, get out of bed to my wheelchair, and for all my daily care needs.  My husband has been my personal care attendant every day since that day. Initially, I was unable to even feed myself, but gradually, with physical therapy, occupational therapy, and speech therapy – first at home and then as an outpatient – I was able to become more independent with everything. Then, I developed a Parkinsonian Movement Disorder, and moving became much more challenging. And then I fell and broke my hip and had surgery to repair it. I have only had one month since 2022 when I did not have any therapy of any kind. When insurance ran out, we privately paid for physical therapist , but I no longer feel confident walking outside of the house.

Before all of this, I had been an inpatient physical therapist for almost 30 years. But because of my speech and physical issues, I have been unable to find a way to return to any kind of work, even remotely. And for that matter, rehabilitation has been a full-time job. I can no longer drive, and the loss of independence has been a struggle for me. I have a therapist that I speak to every Monday remotely, and antidepressants have been helpful, both for me and my husband. I also have an amazing friend from middle school who comes to visit me every Saturday, and we try to spend as much time outside as possible in good weather and go out to do things we would normally like to do, but with a wheelchair. It also gives my husband a day off for him to do whatever he would like to do and not worry about me. I also now have an E- trike which enables me to go on long rides on a nearby rail trail, and to move around my yard to garden without falling.

I think that having the medical background that I do is both a blessing and curse. I’m not giving up, but I am starting to realize that no matter how hard I try it’s always going to be challenging. My family has been very supportive, but they don’t understand what it is really like to walk in my shoes.  I think that having things to look forward to like traveling or getting together with friends is so important. I have travelled to Spain, California, and regularly to Maine since needing a wheelchair, and there is definitely a learning curve to doing it more smoothly. But I do feel it is important for my husband/ caregiver to have a break from the routine as well.

They say that everything happens for a reason, and in my life, I have seen that the biggest hardships often come with the biggest reward. So I am eagerly awaiting the outcome from this journey to reveal itself.

Factsheet on Powassan encephalitis

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Story published July 2026