Today is January 4th, and I’m sure you all have read about my situation or have heard through family and friends what has been going on with me for almost a month now. I figured now that I am up and capable, I should share what it’s been like for me, and it hasn’t been easy.
For starters, I don’t remember anything from around Thanksgiving until Christmas Eve, and from then until now my memory has improved steadily until I feel almost completely normal. However, it is unlikely that I will ever regain memory of this 3 week time-frame; it has simply been erased from my brain.
As you probably know, the medical story is this: I finished finals at school and moved home, living in my apartment with my fiance. At the time, I had the flu, or at least some generic flu-like virus. After about a week, I started losing bits of my memory, and having anxiety attacks, confusion, and hallucinations. One day, I had a seizure in our apartment, my fiance called 911, and I was rushed to the ER. I spent a week in the local hospital, and then transferred to St. Mary’s in Rochester, aka, the Mayo. I was diagnosed with “Limbic Encephalitis” which means that my brain was inflamed, causing the seizures and memory loss. The most common cause of this is cancer, but thankfully, all cancer screenings came back negative. The best theory the doctors have as to what caused my condition is that the flu that I had shared some antibodies with my brain, and when my immune system fought the flu, it also began to attack my brain because of these shared antibodies. There is no proof that this is true, but it is the most likely theory, and from what has been explained to me, it makes sense. Anyway, they put me on lots of meds, steroids to control the inflammation of my brain and anti-seizure meds, and began to flush the antibodies from my system using IV treatments. I was discharged from the Mayo on the 30th, did five days of IV treatments at home, and from now on will have various follow-up appointments and treatments for several months. I remain on anti-seizure meds for several months and am not allowed to drive. Close supervision is recommended for the first week or two to make sure I am capable of caring for myself and not burning the house down.
So that’s the medical story. The truth is that a month of my life is gone- wiped from my memory completely and unlikely to return. All memories from this summer and fall are sketchy, and may or may not return with prompting. I know that I finished my classes and finals at school, but do not recollect anything I read, learned, or wrote during that time period. I have tried reading papers or books that I know I read during my classes, but the information I learned from them is gone. Geographical information is also slightly off- I occasionally don’t remember where something is or can’t picture how something looks in my head- although this gets better every day. My job that I had over the summer closed, and I have no recollection of either asking to return (of which I did, and then I was informed that they were closing) or of the business closing. Luckily, long term memories don’t seem to be affected; I still know people’s names, birthdays, and things that have been in my life for more than a year. I’m still hopeful that some memories from this fall will return with time.
It has been a strange and surreal experience to wake up in a hospital after 3 weeks and not have any memory of that time, or of the medical conditions such as seizures. What I do know is that I have an immense support system of friends and family who have demonstrated every day how much I am loved and cared for, and that means more to me than anyone can ever know. My parents and fiance never left my side during my hospital stay, my relatives and friends all came to visit (whether I remember them or not, I know they were there), and I received cards, well-wishes, and prayers from friends and strangers. I may not remember the last month of my life, but I do know that I was well cared for and very much loved.
What I know now is that I have more medical things to follow through with, I’m not allowed to drive myself anywhere for six months, and I will almost certainly not be returning this coming semester for school- it’s just too soon and too much to handle. I still have headaches, dizzy spells, and parts of my memory may be gone forever. I will continue living with my fiance, hopefully find a job, and work on getting my life (both medical and emotional) back on track for the next several months.
Although I don’t remember what has happened, and I don’t know what will happen, I do know that I have never felt more loved than I do now. I thank everyone for their thoughts and support, and I hope to keep in touch with all of you in the future. Thank you for everything, and I wish all of you a happy new year.
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