Testimony of Carl Kroonenberg

Given at Men's Ministry Dinner, January 30, 2003

I have Usher's Syndrome. Basically, it's a rare genetic disorder that causes vision and hearing loss. I once heard someone describe it as a 'double whammy'...it is. Unfortunately, there is no cure for this disease at this time.

I have been hearing impaired all my life with a loss in the severe to profound range. I began wearing hearing aids at the age of five and had many years of speech therapy. Over a year ago, I received a cochlear implant. It is an amazing piece of technology that is surgically implanted behind the ear and has external components as well. It's been life changing and exciting because I can now hear the birds sing, the crickets chirp and engage in conversation with greater ease. A few months ago, I heard someone's cell phone ring in church while the pastor was preaching. I could tell by the look on the pastor's face that he was not too pleased. But, I didn't mind, I thought it was pretty cool to be able to hear that!

My vision loss began when I was in my mid-twenties.  The first sign of noticing this loss was when I couldn't see the stars at night.  The loss is progressive.  It usually begins with a loss in night vision, then the peripheral and ultimately, the central vision.  I have very little peripheral vision left but, fortunately, my central vision is still good.  It could probably be best described as having 'tunnel vision'.  I am legally blind and had to quit driving two years ago. 

I will admit it's not easy having this disease.  Though my hearing is much improved, I still struggle...especially during group situations. It's hard for me just to walk through this room without bumping into something or someone.  Handshakes can be awkward because I don't always see a person extending their hand to me.

I have a device that helps me with my vision loss...it's called a cane.  I don't have the confidence to use it.  In my mind, using my cane means I am telling people, and myself, that I am blind or very visually impaired...which I am.  But the truth is, I don't want to be blind!  I want to be able to see!  Being blind is no fun...I don't like it.  Having this disease can be exhausting at times because it's so constant. 

But that doesn't mean I live my life in misery.  I continually turn to prayer as a source of strength, comfort and rest.  I believe we all have some sort of trials or struggles we must go through so that we may learn a great deal from them. God allows all things to happen.  Clearly, he has allowed me to have and to experience this disease.  But why? 

• God is drawing me to seek a deeper sense of community and connection.  Earlier this year, the pastor of my church taught that attending church is more than just about worshipping and attending classes.  It's also about a body of believers connecting, caring for each other and investing in each other.  Church is about community and serving God together. His sermon had a profound effect on me because it made me realize that I have been very private in pursuing my relationship with God.  I also realized that many times I used my disability as an excuse to not become more involved and engaged within the church.  Yes, it can be difficult for me to interact with others, but my disability shouldn't hinder my desire to pursue community.  Lately, the Spirit has led me, as well as my family, to make a greater effort in reaching out to the people of our church.  And already we are experiencing the fruit and joy of community!

• God has revealed to me the importance of living life one day at a time.  Because my vision loss is progressive, I sometimes wonder what my future will be like. Will I be able to see my children grow up?  What will retirement be like?  Will I become totally blind?  Looking ahead can be frightening and overwhelming.  My future will unfold according to God's plan, and I am grateful that he has given me the strength and the awareness to live my life in the moment.  I once read a simple quote.  It said, "Look to this day for it is life."  And today, even though I'm faced with challenges, my life is filled with many rich blessings.  Some of those blessings include a loving and supportive wife, two beautiful children and caring family and friends (especially my Mom and Dad). 

• God is reminding me to be more sensitive to others. I confess that it's very easy for me, especially since I deal with this disease every moment of the day, to become overly focused on my needs and my hardships.  I forget sometimes that other people struggle. I pray that God makes me aware of their needs and that I feel the burden of their pain as well.  It is then, I believe, when I am truly able to pray and reach out to them with a genuine and loving heart.

• God is teaching me about brokenness.  Many times, I tend to have a 'self-sufficient, self-reliant' type of attitude: 

• I rarely use my cane... I don't want to be dependent upon it.
• I don't reach out to others enough and share with them my burdens...I can handle this on my own.
• I don't want to be thought of as a person with a disability...too much pride.

• My 'self' attitude does not bring me peace...it creates bitterness.  God is bringing me to the realization of what he is doing.  He is revealing to me who I am...HIS Child.  I am not my own.  I am His and he desires to use my disability and me for his purpose.  And in order for him to do that, I must know defeat and experience complete brokenness. It is then when I can truly give up control and turn myself over to God, so that he can begin to do his work through me.

• Lastly, I have learned the meaning of trusting and depending upon God.  One of my favorite verses in the bible is from Matthew 11:28.  Jesus says, "Come to me, all those who are weary and burdened, and I will give you rest."  Another favorite..."Trust in the Lord with all your heart, and lean not on your own understanding.  In all your ways acknowledge him, and he will make your paths straight." Proverbs 3:5,6.  While life doesn't always go the way we hope and plan, how comforting it is to know that God is in control and to know that he is always there for us.

I am so thankful that God is Our Father and that he has made me aware of his desire and love for me, and my deep need for him and his Son.  And if it takes a disease as ugly as this to help accomplish that, then so be it!  I still have much to learn and I look forward to the journey ahead.