wax on wax off

 The last visit was the 3 day base line at clinic. I started the time with a questionnaire that was very confusing- it seemed like it was written to trip you up. I kinda felt suckered and wanted to yell, "quit messing with me!" Chris aka Ginger thinks I'm  a nut case already so this outburst would only confirm his impression of me. I am sure he wondered why they weren't studying my psychological condition instead of focusing on FA.  One of my mantras is that it's better to laugh than cry! I certainly do my fair share of both.

After I completed the "written" part of the test, I went to another part of the campus that focused on my hearing. I had to undergo four different tests and few of them are shown here:

The screen on the right is the inside of my right ear. Wax free. The left ear? Disgusting!!

 The team reassured me that this was common. Hello, Q-tips!

Truth be known, I pretended to be in a recording studio for this portion of the test.

Four people were focused on tests throughout the day. I was so impressed with them and their commitment to the job. One more reason to love USF!

It's mid March and feels more like mid February. There is snow still on the ground. I'm still dependant on my electric blanket. And I find myself dressing for temperature in the negatives! My next visit can't come soon enough.

Unstoppable.

On my last visit we were driving through the campus of the University of South Florida and I spotted a banner that decorated a lamp post. It sent chills down my spine and I fumbled for my camera and took this photo.
For those of you squinting to make out the word, it says "UNSTOPPABLE". How appropriate. Very timely.
A friend of mine, who is a speaker, challenges his audiences before the new year approaches to pick out a word for the year. A word that you may feel God leads you to- a challenge or even a praise. It's a great idea. I have never done it. Sorry, Doug. It's nothing personal. I am not one to jump on a band wagon just because a lot of people around me are doing it.
But I think this has become my word. It picked me. There were banners on almost every lamp post and it is a huge campus. I never saw this particular one repeated. "UNSTOPPABLE". It's my word for this study. It's my belief in a God that is using people like Dr. Z and Dr. Kelly and SO many others working toward a common goal in finding a cure for FA. How encouraging.
This past week, I had resolved myself to the idea that I needed to fly commercial as the option of Wings of Mercy would not be available. Of course the clinic time is during Spring Break for most people and that would mean a very pricey flight. Through a friend and an answer to prayer, I was able to purchase a flight at a reduced rate. At the exact same time, Wings of Mercy emailed me to let me know a pilot signed up. UNSTOPPABLE.

It is a blast to see how God has this all figured out. I am so humbled to be a part of it all. There is no stopping Him and what he has planned.
And yes, He even uses bull headed people like me.

focusing.

My Bible lies open on my lap this morning and I keep reading 1 Chronicles 16:11 which says, "Look to the Lord and his strength; see his face always." ALWAYS. Yikes. I am not so sure this would be true of me. Do I ALWAYS seek his face? Not so much. I totally get in the way. A lot.
There have been times, although brief, that I sincerely have sought him and felt that I was loving people as he would/does. And it makes life much more bearable. My life has seasons. The older I get and the more I live, I am acutely aware that this is a season of expectations. Not only in my relationships with people but expecting a cure for this annoying disease.  In the past, I was quick to utter the words, "hoping for a cure" knowing full well my heart wasn't caught up with my head. So when I read, "Look to the Lord and his strength; see his face always." I am reminded that's not about me. This journey to find a cure is not mine to claim; it's his. People will never live up to the expectations I have of them. Only if I seek him, my focus won't be on other people but the hope I have in Him. With or without a cure. That is scary to write and even harder to truly live out but I want to believe it in the core of who I am.
The commitment to this clinical study is a priority for me but I don't want this time to be all about me but the opportunities he puts before me.
Its with that funnel that these photos represent. There is a story behind each of them. It's been a riot so far and I desire to be constantly reminded that it's not about me.
I am scheduled for clinic the end of this month. I am out of vacation days and a pilot hasn't signed up with Wings of Mercy but I am confident he provides when things on paper don't add up. That is, if I keep my eyes fixed on him.
Speaking of eyes, FA has apparently caused my eyes to jump a bit but I have over 20/20 vision in both eyes. The one good gene I do have!

this how I felt after they dilated my eyes for the tests, I couldn't see a blasted thing for a few hours.

ayha matey! testing for color blindness

drawing blood AGAIN and again and again...

shadow of His wings.

I was talking with a friend yesterday and he asked me a highlight of the trip. I can't pick just one. It certainly wasn't the awful stench on the flight home. The flight attendant and I bonded as I had my nose covered with my scarf and our eyes met as she gasped for fresh air as she approached the front of the plane. Wow- I am a bit gaggy thinking about it! Funny, nonetheless.
One of the many highlights from the trip was meeting another patient in the study. The first study I was involved in at USF, I never met any of the other participants. Our appointments  can be staggered and we may start the testing/medication at different times. Because of confidentiality, the team doesn't discuss other patients. I knew there was someone else there at this visit, I just didn't know the who, what, when, or where.
That soon would change on the third day of testing as we had a 12 hour day scheduled. Our rooms were adjacent and our breaks between our blood draws overlapped each other. Myra and I (the friend who traveled with me) would spend every minute we could in the warm sun during our free time. It was during one of these breathers did Greg introduce himself. We immediately bonded. I quickly formed a space for him and his family in my heart. His diagnosis of FA is new. Because of this, I found  myself pressing the rewind  button and a flood of memories filled my mind. And four days later they still are occupying my thoughts. I've spent the morning crying. Tears of anger, of hope, of disappointment, of hope, of fear, of hope, of sadness, of hope, of loneliness, of hope, of silence, of hope, of confusion, of hope, of grief, of hope...did I mention hope?
One of the memories I have during the early diagnosis of FA is with one of my best friends, Tricia. We were room mates in college. Although my diagnosis was confirmed during undergrad, this conversation occurred after we graduated. She spent the weekend at the duplex I was renting at the time. I can't even remember what we did that night but we ended the night talking. In a simple yet thoughtful/concerned question Tricia asked, "Holly, what if this gets to a point you can't use your legs anymore?" I am sure I responded with a pat answer at the time. But here I am, 13 years later, wheel chair bound and only using my legs to transfer. And I honestly still don't know how to answer her. Some may call it ignorance. I think I refer to it as self-preservation. The most important thing I gained from that gut wrenching question was the comfort and confidence that someone was going to walk this ugly road with me. At that moment, I knew she would be in my corner nestling in with the unanswered questions.
My friend Tricia represents the MANY people in my life that has made this horrific journey beautiful. So beautiful.
And that is my hope as Greg and I and 14, 998 others who are in the family of FA will experience...the beauty.
In the meantime I will rest in the shadow of his wings and wait for a cure.
"Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed." Psalm 57:1

on a break from the 12 hour blood draw

My next visit is scheduled for the end of this month. Praying like crazy that pilot will be available for Wings of Mercy.

the curtain.

waiting in the airport leaving Florida

It is always difficult to leave Florida. I know the weather plays a huge part of the reason for grieving going back to Michigan but I LOVE the whole experience. The people, the USF campus, the hope...the entire package.
This visit was a 3 day baseline and I began the medication. Although we had to fly commercial this time instead of Wings of Mercy, it went great. On the way down to Tampa we were bumped to first class. It was the start of a fantastic trip. I think during the 2 hour flight I believe I said to the friend traveling with me, "we're in front of the curtain!",  at least 10 times.
The front of the curtain was just one of the many blessings through out this visit. It's been 2 days of taking the medication. Even though I have to chug it down with milk, I am thankful for each swallow as my heart fills with hope. I feel that my journey has a purpose as I put one foot in front of another as we travel to a cure...even if it's behind the curtain!