Today was not at all what I anticipated. I went to SLC for my first facial therapy appointment, where I thought I would learn a trick or two to help me gain more use of my facial muscles. What I received instead was a different kind of therapy altogether, it was healing, calming, loving and teaching.
The "aha" moments from today are far to great to record them all, so I will choose a select few to share. I hope you will see a little further into my world because of them.
* Research has demonstrated that different illnesses or events cause different amounts of trauma. There is a "trauma scale" that indicates these differences. A minor accident may be a 5 or 7, while having a stroke is usually about a 30 (I believe more in some cases). Having a terminal illness, such as HIV/Aids, is 40-45 on the scale. Facial trauma, however, causes the numbers to spike, reaching to 60-65!
My first instinct was disbelief - worse thatn Aids?? But as the explanation came, my "aha" moment hit. Your face is a representation of your soul, your spirit, of YOU. It is how you express yourself, your love, fear, anxiety, happiness... It is how people know you as you. To "lose" any of your face, either through disfigurement or paralysis, is traumatic and LIFE CHANGING!
* Any loss requires some amount of grieving before healing can take place. I AM NOT THE SAME PERSON WHO WALKED INTO THE HOSPITAL ON MAY 13, 2009. No matter how normal I look, I will never be that person again. Today, my gut feelings and personal experiences were confirmed and I know it is OK to grieve for what was. I must grieve in order to move on.
The grieving process can take place one step at a time, or all at once, quickly or slowly, and it can happen over and over again. It can be triggered by a photo from the past, a hard time, a frustration, a comment, etc. Thank you, Janene, for confirming that what I go through is normal and OK.
* "Looks" are not an indication of functioning, when it comes to paralysis. People look at me, and I look pretty normal again, but the nerves and muscles "behind the scenes" still do not function as they should. My outer appearance is not an accurate representation of what is happening inside. What happens inside my face affects every other part of my body! When my eye is dry, irritated and painful, I put on an eyepatch. The patch causes headaches. The headaches cause tightness in my neck and back. The tightness causes sleeplessness. The sleeplessness causes.... You can see the cycle.
This is how I have felt for so long, though it didn't really make sense to me that my body should struggle so much a year later. Now, I understand that my "gut" was right, it does affect all of me.
* Healing is as much mental as it is physical. I have longer believed this, and today proved it with statistics. I can still heal, improve, regain functioning and have my face reflect more of how I truly feel. I am still getting better. The process will likely take 2-3 MORE years! (That was a shock.)
These are just a few of the MANY things I learned today. I also learned exercises I can do to help improve my condition. I learned that most people will still never "get it". They will look at me and say, "You look great. Don't worry about the little things (ie, smile, eye, etc), you are a survivor, and that is what counts." And while they mean well, they won't get what is happening underneath my appearance. That is OK though, because I know they love me and mean well. And, there are a few out there who do understand and can help me when I struggle.
And for me, there is always a faithful, patient blog out there, waiting for me to pour my heart out in a string of sometime incomprehensible words. These words are also my therapy, these are often the feelings I cannot express in person. So they live here, in my online universe.