2020: The World stands still; I still struggle to stand

2020 has been a Really bad year for a lot of people starting March. But for me it has been the worst year of my life since January. Yes even worse than 2018 when I first had my brain injury, because at least that year I had hope, determination, and progress. This year has been nothing but disappointments.
In January, I had an appointment for an experimental procedure in Florida. I spent the 2-3 months before the appointment obsessively watching YouTube videos of people who hadn’t walked in 5,10, or 15 years start walking within minutes of the procedure. People were healed after all sorts of brain injuries and strokes. It had an 80% chance of working so I was very excited.
At the end of January my mom, fiancé and I flew to Florida for the procedure. Within a few minutes of the injection I was supposed to get, I was speaking clear , could move my arms more, and walking better, with more balance. The doctor said I would see more improvement as the month went by. I made a follow up appointment to go back in February for another injection that was supposed to boost my recovery. The first couple of days back home I definitely started to see a lot of improvement. Even my physical and occupational therapists were amazed with how I was doing.
And then by the first week my improvements started to diminish. I called the clinic and was told that because I was such a severe case with two strokes AND anoxic brain injury , it happens sometimes, and once I went back for the second shot I would improve again.
So at the end of February I went back for my second injection…. and nothing happened. The doctor signed me up for another shot in April. When I came home I decided not to go back for the third shot because after spending $16000 on two injections and not seeing any results, I felt like it wasn’t worth it to try anymore.
In the beginning of March we decided to go to India because I felt like I could get therapy more often there, and it would be a lot more affordable. In America I was only eligible for therapy three times a week for an hour each time. We were supposed to fly out on March 13 and the day before we found out that all flights going to India were going to be canceled because everything was being locked down.
At that point everything was closing down, everyone was sheltering in place. Even rehab was not safe to go to so I stayed home. Eventually all the rehabilitation facilities also stopped taking patience due to the virus. In July I made an appointment for rehab and was put on a waiting list.
From March until July I didn’t go anywhere. It was the most depressing time in my life. Some days I didn’t have the will power to do any exercises or talk to anyone. I cried myself to sleep almost every night. In July we started venturing out a little bit, taking weekend trips to visit my cousins in West Virginia. In August, my parents decided we will move out of New Jersey and they hired a builder to make a customized, wheelchair accessible house. I started to feel a little better, having something to look forward to.
From July until September I had been waiting to go back to rehab, periodically calling to check the status. I received a call, suggesting I get Botox while I waited to start therapy again so that my hands and feet would be more relaxed for when therapy resumed. I called for an appointment and was informed that the whole process from consultation to the actual Botox injections would take 4-5 months. Since I was supposed to be moving at the end of December I didn’t make an appointment.
Because nothing else is going right this year, in November we learnt that the house will not be ready until the end of January. So I am stuck at home with no therapy and no Botox.
2020 has tested my patience and my optimism. It has been a year full of disappointments and setbacks. I have never cried as much as I did this whole year. I constantly felt like a burden on my loved ones, like they would have been better off if I had not made it. I try to always find the silver lining, but this time it is very difficult to imagine anything positive happening. This is rock bottom. All I can say is thank god it is over.

2 thoughts on “2020: The World stands still; I still struggle to stand

Leave a Reply to Jill Callaghan Cancel reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s