My wife is a boss. Since she is such a great photographer/entrepreneur, some friends booked her to shoot their wedding in Paso Robles, California. Since the wedding was on June 26th, and June 25th happened to be our 6th anniversary, we made a vacation out of it.
Traveling brings mixed emotions for me. It is fun to get away and have some time to relax without thinking about all my responsibilities. However, traveling always brings to the surface my struggle with FA symptoms. Exhibit A: walking through the airport.
Part of me dreads flying because I have to walk through the airport. It is exhausting. It is not that I’m out of shape—today I biked 15 miles in 1 hour. It is the fact that my body works so hard to maintain balance that I get tired out almost immediately.
But, did you know that airlines offer wheelchair assistance at the airport free of charge? So why not take advantage of that? Great question.
I had never used a wheelchair. I have been avoiding it as long as possible. I have been afraid that if I sit down in that wheelchair, I’ll never get up. Some FA treatments are close to being accessible. I have thought that I could hold out until I receive treatment and then I’ll never need the wheels.
Then, there is the shame.
This is the deeper issue. I am ashamed that I need help. I am ashamed by my lack of balance and coordination. I am ashamed of my slurred speech.
And sometimes…
I hate myself.
I hate myself for being born with a rare disease. I hate myself for not being more “successful” (whatever that means). I hate the strain that my illness puts on my family and loved ones. I hate that I won’t be able to play catch with my sons and they will be confused by why their daddy has a disability. I hate being perceived as less competent or intelligent. I hate asking for help.
As I write it, I know how illogical it is. I know that I have nothing to be ashamed of. I know that it is not my fault that I was born with FA. I know that having FA is out of my control.
If only my feelings could catch up with my knowledge.
I have been on a journey of emotional health; of understanding what it means to embrace my emotions while not being ruled by them. It’s not easy, but then again, nothing worthwhile is easy.
In my most recent song, I wrote this:
I just wanna make the most of every moment
And I know that my pride is my biggest opponent
I just smile through the pain and I barely ever show it
Cuz I feel like it’s weakness if anyone could know it
In writing this song, I came to a realization. My biggest enemy is not FA. It is not a wheelchair. It is not other peoples’ perceptions.
It is me.
My pride. My unwillingness to be vulnerable.
And here’s the truth. We all need help. I just have a condition that is more obvious. But we all have problems. Pride, anger, trauma, selfishness, and so on. We all have fears. We all need each other and we all need Jesus.
Even if doctors cured FA today, no medication could fill the hole that we all have in our hearts when we are disconnected from our created purpose: a loving relationship with the God of the universe through the Holy Spirit by faith in the life, death, and resurrection of Jesus. No amount of advances in medicine can ultimately prevent death.
Maybe you don’t believe in Jesus. Well, what do you believe? Take some time to seek out the truth about life, death, eternity, and purpose; it will be worth it. Got questions? Feel free to ask me or ask your local church’s pastor.
As I sat in the wheelchair and was pushed across MSP and LAX, I was well aware of all the weird looks I received. I was well aware of my pride and insecurity surfacing.
But, I felt a strange sense of freedom. I no longer have to dread airports.
There is freedom in getting the help we need. So go do it. It is the same freedom I felt when I admitted that running my own life wasn’t working so well and I gave up the reigns to God.
Was this wheelchair ride a major breakthrough? I’m not sure. Is my pride and unwillingness to receive help done away with? Definitely not. Even so, this was a step in the right direction. A step towards loving myself.
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