Objects in mirror are closer than they appear.

I’ve spent a lot of my adult life being a classroom student. From my early 30s to my early 40s I was enrolled at the University of Florida where I earned three degrees in nine years. I completed a B.S. in psychology with a minor in gerontology. I graduated with highest honors by successfully completing a research study on memory and aging that my advisors told me was worthy of graduate level work. I went on to complete MEd and EdS degrees in mental health counseling, also with a minor in gerontology. I did a practicum counseling with Alzheimer patients and their caregivers and I did an internship counseling with college students on campus. While doing all this I also served as a Hospice volunteer helping people with terminal illness and their caregivers.

A few years ago, as I was approaching 50, I decided to spend some more time in the classroom. After going through major spinal issues and surgeries that left me with other health issues as well, I decided to heal myself by studying holistic nutrition. I wanted to learn how to use nutrition to not only get back to health, but also how nutrition plays a role in keeping us from getting sick or having physical deterioration in the first place; nutrition as preventative medicine, if you will. I earned a CNTP (with a 4.0 GPA) and was one semester away from completing the MNT when I began to realize something was seriously wrong with my brain. Something had changed. I went from being a person who had an enormous capacity for learning to realizing I couldn’t remember the paragraph I had just read. I went from having learned how micro and macronutrients work at the cellular level to not being able to remember which nutrients are fat-soluble (basic knowledge for a nutritionist). The information had all been there, stored in my brain as knowledge, and then it began slipping away. It was very subtle at first, so subtle I wasn’t sure it was a problem until I began my independent research project in my last semester. I could not figure out how to apply what I had learned to solving a health problem because I couldn't remember what I had learned. Ironically, I had graduated college 14 years earlier with a 3.9 GPA and highest honors for my research on memory, but now I couldn’t remember the basic facts about nutrients that I had just been taught. My brain had started dumping information and it stopped allowing me to retain anything new. Something was very wrong.

At first I was worried I was experiencing early onset Alzheimer disease or some form of early dementia. This being a frightening concept, I didn’t go to my doctor to ask about it. I kept thinking it would get better. I looked for signs of other changes, or worsening of my memory, and over the past year things did get worse. By the time I finally sought answers with a doctor, I was also dealing with a host of other symptoms that have continued to worsen. I do not have Alzheimer disease. I have a 17mm pineal gland cyst sitting in the middle of my brain. Based on all the medical testing I have had over the past six months, there is nothing else wrong with me but the presence of the brain cyst.

Now I find myself a student once again, not in the classroom, but learning a subject from direct experience and trying to educate myself as much as I can about what I have and what I can do about it. I’m learning that brain cysts are very similar to brain tumors and traumatic brain injuries. A large brain cyst like mine can do damage to brain function that very much resembles dementia…memory loss, inability to do simple math, poor word recall, not knowing today’s date, and not being able to read and follow instructions. These cysts cause damage to eyesight. They negatively affect sleep. They make it so you cannot tolerate noise or chaos. They create tremendous fatigue and malaise. The constant brain fog makes me feel stupid and slow. And the worst part is how all of that combined is trying to steal my life and livelihood. I miss being active. I miss pursuing my interests. I miss being with people. I miss being a part of the world. I miss traveling. And the world goes on around me like nothing has happened, but something has happened to me and here is my current reality:

• I'm doing the best I can. I’m learning to say no, even when I really want to say yes. I know that if I overextend myself, using more energy than I really have available to me, I will pay for it with increased symptoms. It’s a learning curve.
• I feel much worse than I look. A brain cyst is an invisible illness. Most days if I take a shower and do my hair and get dressed and put on a little make-up I will look like I am fine. I’m not fine. The exterior is not an adequate representation of the interior.  I couldn't help defending myself the other day to a FedX store clerk when she scolded me on the dangers of having left my credit card in a fax machine and driving away from the store. I looked at her straight in the eye and calmly informed her "I have a brain tumor and I can't remember things." She became very apologetic, but I made the point that just because a person looks well, they may not be well.
• I’m scared. I’m trying to BE brave, ACT brave, but a brain mass that has no treatment option other than brain surgery is scary as hell, and so is doing nothing. If I leave the cyst in my brain I don’t know how bad my cognitive symptoms and vision loss will get or if they will become irreversible (or if they already have). If I have brain surgery I don’t know if I will get better or worse or die. These are all very real concerns that don’t make my decision process easy at all. Yet, I am in the process of making a very big, scary decision. I have a surgery date scheduled and I have a second opinion scheduled. And I don't know what to do. 
• Please, don’t take anything I do or don’t do personally. I know I forget the things you've told me. I know I don’t call you as much as I used to. I know we aren’t getting together to do things like we used to. This is in direct proportion to how I feel, not how I feel about you. I no longer have good days and bad days. Now I have bad days and worse days. But…I still want to hear from you. I still want to know about you and your life. I still want to keep in touch. I would love to sit and chat, have a cup of tea. I’m not dead, so I have that going for me (a little brain cyst humor)!
• I have hope. I hope to get well. I hope to get back to the life I was enjoying. I may never have that again, but I hope I will. I hope if I decide to have brain surgery that it will go very well, relieve all my symptoms, and leave me better off than I am now. I hope. I hope I make the right choice when I do choose. Objects in mirror are closer than they appear!

My greatest knowledge in all of my education did not come from a classroom. It came from my Hospice volunteer experience in my 30s. I learned that giving my time and compassion to helping someone in need, particularly someone at the end of life, is way more fulfilling than any job for which I ever got paid. I also learned from conversations with my hospice patients that by the time you get to the end of your life most of the things you have spent your precious time doing will not matter to you. You won’t be lying on your deathbed thinking, “I didn’t work hard enough” or “I didn’t earn enough.” What will matter will be the relationships in your life. You will be asking yourself, “did I love enough,” and “was I open to being loved enough?” It is this knowledge that I have been reflecting on a lot lately. Not because I feel I’m at the end of my life, but because I don’t want to wait until I’m there before I pay attention to what matters most.