I’m pretty lucky in many aspects of my life and for these I am grateful. Health is a different issue altogether. I feel like I am constantly walking on shards of glass and I cannot remember the last time I woke up with no pain at all. I am now always exhausted, but I try to not to make this affect my job and my life as a whole. I try doubly harder and with so much to do (teaching college students, committee work, thesis, chores, being physically and emotionally present for my 5 year old), it can get discouraging. As long as people see me smile, though, they should know that I am still fighting.
On an Ash Wednesday, these are the things that are in my thoughts:
– the beginning of Lent, of sacrifices and reminders of our mortality
– a friend who has died young because of Hodgkin’s lymphoma
– my own mortality, the fragility of my human body
– a spiritual world that is stronger than the corporal one
– the importance of human relationships, and how they can be broken by so many things: misunderstandings, selfishness, circumstances, sickness, death, etc.
It has been two years – almost – since I was diagnosed with Tarlov cysts. I could still distinctly remember sitting on a bench and blankly staring at the white walls of the hospital where I had the MRI. Doctors assured me that the condition was not malignant, that I was not going to die. These declarations were somewhat comforting but could not change the fact that my world had turned upside down. There was also the worrying fact that most doctors do not really know what to do with the rare disease.
A few days after, I quit my gym membership. I stopped carrying my preschooler around, and he begun to wonder. Of course, he was getting bigger but the change was so abrupt he thought that something was wrong with our bond as mother and son. He acted out for awhile, but now he finds the few times that I carried him as special. Those few times could effectively calm him down from a tantrum.
I could no longer run, or walk as fast as I wanted. I had to find new ways to maintain my weight, and I need to do just that if I want less pressure on my back. With my PCOS (polycystic ovary syndrome) adding to the brew, I thought I was fighting a losing battle. However, I was able to find a rhythm, the commutes and walking, the pacing around in the classroom as I teach, and the short breaks for lunch had managed to solve the weight problem. I lost more than ten pounds without any gym membership. But that was just one small part of the whole problem.
For a while, I thought things were fine. After seriously pondering surgery, my neurosurgeon had finally given me an okay signal. She was so happy that things were going well with me, that I was not suffering from symptoms, that she ended up returning all of my MRI records to me. She said that the pain that I was experiencing was more likely produced by my herniated disc, and not by my Tarlov cysts. Yes, I also have that problem. I don’t even know if the disc could be somehow fixed without affecting my cysts. I also have bilateral scoliosis. Things were pretty darn awesome. Let’s get the party going.
Last week, however, things went south fast, in more ways than one. I had a sharp pain that reduced me to tears. It started off with strong pressure on my lower back. I actually thought that I was about to have an unwanted bowel movement at work, but it was not the case. The pressure continued to build until I recognized it for what it was – PAIN, in capital letters, yes. The pain was worse than the one I experience when at labor. I was rushed to the school’s clinic (I work as a college instructor) on a stretcher. It was embarrassing, but necessary.
Today, my pelvis feels like it could break anytime. I walk as slowly as I could. I am afraid to do things. I am afraid that I would end up a cripple. I should get an MRI again. The cysts could have grown larger. The herniated disc may be in worse condition. I do not know what to think.
On the other hand, I want to be free with my movement again. I want to have another child. I want to hike, climb, run. I also want to be understood, because people like me with invisible diseases are often misunderstood.