People With Brain Tumors Are Beautiful Too

This is Harley's creation during our pumpkin carving. If you look deeply it is a rather happy pumpkin. Try this: take a sheet of paper and cover up the left side of the pumpkin face. See! Our pumpkin is smiling!

Harley worked hard and took great care in this design. The image illustrates what often happens to those inflicted with brain tumors such as NF2 or AN. The paralysis does not allow the face to move in the positions that it naturally did prior.

For this reason people may mistake the person for being grumpy or seeming unhappy. For those with NF2 and extremely large AN tumors, the loss of expression can be a very difficult communication barrier. First, sign language relies HEAVILY on the use of eye contact and facial expression. Without full freedom of movement of the facial muscles, it can be very difficult to discern if one is asking a question or making a statement.

Some people have facial paralysis on both sides of the face as NF2 is characterized by bilateral vestibular schwannomas (often referred to as AN for acoustic neuroma). What this means is that tumors grow on both side of the brain and can affect the facial nerve on both sides depending upon the size or shape of the tumor, and possible damage from either surgery or radiation.

In addition to becoming a communication barrier, facial weakness/paralysis makes simple tasks such as eating and drinking very challenging. Often those with facial paralysis chew on one side of the mouth and drink only through straws such as I have done for a year now. I still chew on one side of my mouth and it takes a very long time to make it through a dinner. Gone are the days of eating on the run (unless it is a cheese stick) or stopping for a "quick" bite to eat.

If you will also notice, there is weakness in the pumpkin's eye lid. This is VERY common. Those of us often become a drug warehouse or eye pharmacy. Since October of 2004 I have lost the ability to produce tears and need to use artificial tears during the day and gel drops at night. The gel drops help to paste the eye lids closed because the lid on the weak side cannot create a functioning seal and thus the eye dries out during the night. Failure the keep the eye lubricated can result in blindness. Many people actually "tape" their eye shut and it might be something I will have to start doing as my eye is sore and red when I wake up in the morning.

As you have read, facial paralysis is not simply a matter of looking "GQ" or "COSMO". The condition presents serious hurdles to overcome and life adaptations to be made. So the next time you see someone with facial paralysis think about everything I have mentioned and how beautiful that person is for their strength and perserverance.