New Normal

Many people have asked me how Veronica is doing.  My initial and honest thought that comes to mind is how happy I am with all of the progress that she has made.  However, this makes me feel like I am hiding some of the facts.  While I am truly impressed by the progress Veronica has made, the reality of the known and unknown side effects of the surgery are hard to watch.  I know that Veronica is hopeful that she will continue to get better, and she is working hard.  We won’t know how well she will recover or what her “new normal” will be for a year or more.  The fact that she won’t be the same is stressful for her and she is anxious about what her new normal will be.

Veronica is tired of being in recovery mode.  We know there is a long way to go, but these first two weeks have been exhausting.  My hope is that being at home with the kids will give a new perspective.  We are going to miss sunny SoCal.

One of the most frustrating things about this tumor has been the lack of outward signs.  Right now as I look at her across the room she shows no sign of pain or extreme dizziness; even the scar from her surgery is hidden by her hair.  I know that the normal things that she expects to be able to do are not as easy as they used to be.  Some may never be.  For example, yesterday she washed her hair and was so exhausted afterward that she had to take a nap.  The effort needed to function day-to-day coupled with the unknows of how close she will be able to get back to her usual routine makes her sad and frustrated.

When you look at the picture below of her you wouldn’t be able to tell the agony on the inside.  Like many people who suffer silently, Veronica is unsure about how to share her struggles.  She shared this quote with me, “The worst thing you can do to a person with an invisible illness is make them feel like they need to prove how sick they are.”

Veronica is now and will be for an unknown amount of time, suffering from extreme vertigo like systems.  She is dizzy and unbalanced.  When she moves her head the whole world around her moves and then it doesn’t stop moving from her perspective until long after she has physically stopped.  When she is able to sit still, her vision of the world is shifting and slanted.  She has a massive headache and moving her body is nauseating.  Unfortunately, the most effective way to get better is to move her body.  When she does fight through the nausea she gets tired very quickly.

There are also sensory challenges.  Veronica is trying to live in a mono world. Now that she is deaf on her right side, her left ear and the corresponding part of her brain need to do all of the audio processing while also trying to pick up the balance work from the right side.  The three ways your body balances are through your inner ears, eyes, and the bottoms of your feet.  1/6th of this system was abruptly removed and the other 5 parts need time to rebalance and organize their efforts.  Her brain needs to understand these changes.  All of this causes light and sound to be overwhelming.  It is hard for her to focus on particular sights and sounds.

Many people have offered to help us in many different ways.  We truly appreciate the prayers and works that everyone has done for us.  Please know that Veronica has a long way to go, and we appreciate your continued support and promise to let you know what help we need as we figure out our new normal.