Life is happening right now. It's all around us. For some, it's passing by without a second thought.
Even as you read this post and are wondering where I am headed with this, you are living. It may not always seem exciting to perform your daily chores and routines, what would you do if all of that changed and you lost control, you lost the ability to do the mundane?
That's what happened to me when I was diagnosed with syringomyelia. One day I woke up, went to work to perform a job that I truly loved and one doctors appointment changed all of that. An MRI showed, what they thought was a massive tumor,C3 to T10, (possibly cancerous) and the neurosurgeon who broke this news to me, was scared to even touch me. That is probably the first time in my life, where I can say that I was terrified. The tears took control, I trembled. The list of restrictions continued to replay through my thoughts and my poor husband of only a month, was devastated.
I realized how precious life is, how it can change without notice, and how important it is for the people you love to know that you love them.
Another surgeon was found. He's wonderful and I may not be here if it weren't for him. I find that I am more grateful for things that I didn't give much thought to before July 2011. I watched myself lose function of my arms and hands, I felt the pain travel through my body, and I watched my family sit next to me, feeling helpless. We all felt lost for awhile. This rare disease had invaded our home and we knew it wasn't going to leave.
I realized the importance of life. How it is important to live, follow your dreams, support others, be the best person that I could be under all circumstances.
My pain increases with time, as does my desire to pursue a lifelong dream to publish my writing. I had always been accepting of letting it be a hobby. But my life changed and I had to change with it. I am no longer able to work outside the home; I have been officially labeled 'disabled'. Not sure that I know how to feel about that, since I am only 37, but I manage and I know that there are others out there who are in more need than I am. I'm grateful for everything that I have. I joke with my dad that I got a Medicare card before him! He paused before laughing...it never seems to get easier for him. A positive attitude and sense of humor will go a long ways to helping a person deal with tough circumstances.
Syringomyelia is a rare progressive disease; it is classified as an autoimmune disorder. That is a lot of big medical school lingo for 'you will gain many painful disorders over your lifetime'. I was diagnosed in late July 2011 and my first surgery was August 8, 2011 (my 'zipperversary' date). I have also been diagnosed with fibromyalgia, arthritis, cervical degenerative osteoarthritis, hypothyroidism, and chronic pain. The arthritis is getting worse and is affecting all of my joints. Last night was another long night. I was up all night because lying down is extremely painful to the back of my head and my neck. Lying down (being still) also causes my joints to begin to stiffen and it is quite painful when I don't try to keep things moving. Last night, I couldn't even hold a book because my hands couldn't fold around and hold it. Sigh. The realization here...remain positive. Don't become too caught up in what you have lost; take it one breath at a time and have someone you can lean on.
For those of you who have read some of my other posts, you may think to yourself that some of this is a repetitive. And you're right. Much like my everyday life, some days are just like others! But! I do gain new symptoms that add a teaspoon of something here, a cup full of something there, and a bucket full of surprises all over! Which keeps me human. I currently have two syrinxes inside of my spine, both are in my cervical area. One of them is causing a lot of pain (this was my latest bucket full of surprise) and I will have another decompression surgery this fall. Surgery doesn't worry me as much as the recovery.
Realizations are what help maintain my sanity. I prefer the facts. I don't want a bunch of fluff when the doctor is giving me a new diagnosis. I already know that I have everything that I need. I do my best not to be too extravagant. There is so much to be thankful for and I don't want to be thankful that I have the latest designer bag, I want to be thankful that I sat outside and watched the sunset or rise, thankful to spend two hours on the phone with my best friend, etc...etc...
Things look differently when you are looking at them after a life changing event. I don't know about you, but, at first, everything was muddy. I've had three years to clear the mud from my eyes and I fell in love with what I saw...the future that I was able to create!Euripides said, "Enough is abundance to the wise". I love this saying! It sums up my feelings so simply.
Thank you for reading and please have a great weekend!
Best Wishes,
Monica
