My Reaction

"I can run some tests but I do not need to.  I know what you have.  It actually explains your hearing loss; it is called Usher Syndrome."

That was the first time I had heard of that.  I had been around many Deaf people (primarily through my college years) and I had never heard of Usher Syndrome.  But after being diagnosed and sharing with them I learned that many of them knew at least someone other than me with Usher.  Apparently it is a rare genetic mutation, but it is also the leading cause of Deaf/Blindness.  The gene is auto recessive which means both my parents are carriers (with the recessive gene) and their children stand a 25% chance of carrying the genetic mutation.  My parents had 3 and I was the lucky one to get it!  With Usher, there are 3 types of which I have type 2.  It's characterized by significant hearing loss from an early age and then something called Retinitis Pigmentosa kicks in  during the young adult years.  RP involves several things, but the primary concern for me is the loss of peripheral vision and night blindness and there is no cure.  The peripheral loss gradually gets worse and worse.

Now when I heard my diagnosis I didn't really think anything.  I actually thought it was cool--after all these years I had an actual medical explanation for my hearing loss.  It wasn't until I got into bed that night that it really hit me.  At first I did not react too well.  My wife was a month pregnant and all I could do was envision my life 10 years from now not being able to see my child do whatever he/she would be doing and that crushed my heart.  The next day I got clarification--while my tunnel vision would continue to get worse, it almost never results in complete blindness!  I would be able to see my son grow up--that's all I cared about.  However, the most annoying thing about this diagnosis is there is no telling how long it will take until I see through a tunnel smaller than a dime.  It could be 20 years or it could be 2 years.  There are so many different variations of this genetic mutation that the rate of progress varies from person to person.  I'd prefer to have some kind of timeline so I could prepare myself mentally if anything.  Instead I think every day "I wonder how long it will be before I can't see Mary's face in one look?"

That was all my initial reaction.  How I deal with it now?  Well, I don't (sorta).  Physically I do (use a walking cane when needed, always scanning my environment, use assistive technology, etc.) but mentally and spiritually I don't "deal with it."  I'm still me; nothing's changed.  I try to find as many ways possible to get humor out of it--sort of my way of letting others know that "it's okay" (and it's good to laugh).  But ultimately how I really feel about all this is: To God be the glory.  The message at church nailed it on the head.  We were covering James chapter 1 and the 2nd verse says "I consider it pure joy when I encounter trials of any kind."  This is my trial and I consider it pure joy.

I had a co-worker who I guess you would call a "charismatic Christian" who came into my room one morning offering prayer.  Then she also said something along the lines of healing.  She came to ask if I wanted to be healed because in her praying she got this sense that I was not to be healed and that I was content.  And I was content.  I could ask "Why me?" but really the question is "Why not me?"  When I look at healings in the scripture, it's always for the sake of proclaiming who Christ is or God's authority.  God has already accomplished that mission in me.  I consider pure joy to face this trial.  I delight in the fact that God created a uniqueness in me to be used as His vessel.  I glory in the fact that my weakness will be made His strength (1 Corinthians).  In physical activity, sure Usher has set me back.  But what's that to me?  Life isn't about me.  In what really matters, Usher has propelled me forward.