Retinitis pigmentosa

A couple of years ago, I woke up with a bunch of eye floaters and some cloudiness. Nervous about what it could mean, I called my optometrist to set up an appointment. He referred me to a retina specialist, and thus the journey began.

The retina specialist did not see anything to indicate a detached or torn retina, but he did ask me if anyone in my family had blindness. I thought it was a weird question, but I answered no, not anyone I knew.

I scheduled follow-ups, and the specialist asked me more questions about my family and explained that he was suspicious that I had retinitis pigmentosa (RP) but that we would keep an eye on it. RP is genetic, and because I didn’t know of anyone blind in my family, I figured it wasn’t that.

A month ago, RP made my chart.

Simply put, the rods and the cones are dying, and pigment changes are the first indicator of the problem. For me, RP is the primary issue but is followed by my high level of myopia (nearsightedness) and my floaters. I have the pigment changes in both eyes, but it’s happening very slowly, so there’s nothing more I need to do other than checking it each year and staying healthy.

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The most shocking moment was getting the appointment overview in the mail and seeing RP on paper. I cried some and prayed some, but mostly I stayed quiet, processing in my own time what the news meant.

Even though the news isn’t great, God has been more than gracious in all this. To begin with, He has given me the very best of friends, family, and co-workers who support me and love me through the chaos. I know there are always people praying not necessarily for healing but for God’s will to be done, which is precious to me.

God has put some special individuals in my life who have blessed me in many ways: giving me good-quality sunglasses to protect my eyes, sharing articles about possible treatments, and offering to connect me with someone who has the same thing. It’s humbling to have people like that in your life, people who truly care about you.

And those experiences aren’t the only ways that God has been gracious. To begin with, I do have sight. There are plenty of people who would love to have the limited vision I have if it meant they had vision at all. I don’t take being able to wake up and see for granted. In fact, most mornings that’s the first thing I thank God for. I realize I have such a gift in my vision, and I don’t want to miss the opportunities to thank Him.

Also, I have the resources to get the medical attention I need, and that is a gift from a very loving and caring Father. He has gifted me with all of my needs and most of my wants. He has put the right professionals in my path to where they can explain what’s going on with my eyes and help me through this part of life. That’s no big deal to some people, but it’s all grace to me.

Finally, I find so much comfort in the fact that the God I know is Healer and that RP is under His authority. I will not see one day longer than He has ordained, and He knew how many days of sight I would have when He created me. Because of that, I can rest knowing that RP will not disqualify me from doing God’s work. His plans for me don’t stop if I get to the point that I can no longer see. He will still use my life for His glory, and I find peace in that.

I’ve never been one to have favorite Bible verses or stories because I change them out too often, but the two that stand out in this whole situation are these: the leper and Bartimaeus.

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By eating leafy greens and tomatoes, I can help my eyes stay healthy. I don’t like tomatoes, but I will certainly learn to love them if it means I can see longer.

Read Luke 5 for the whole story, but for now, Jesus was passing through a town when a leper saw him. The leper fell to the ground and said to Jesus, “Lord, if you are willing, you can make me clean.” I love that. For the leper, it wasn’t a question of whether or not Christ could heal him; he knew Jesus had the power. The only question was whether or not Christ would be willing to do it. The same is true for me. My eyes can be healed, but is He willing to do it?

The other story I like is found in Mark 10. Bartimaeus hears that Jesus is passing by, so he calls for Him. The people try to quiet him, but Bartimaeus keeps on calling. When he meets Jesus, Jesus asks Bartimaeus what he wants. Bartimaeus replies, “Rabboni, I want to regain my sight,” and Jesus says his faith has healed him.

I love the honesty of Bartimaeus here. He didn’t have to come up with a super spiritual answer but could be honest with Christ and simply tell Him what he wanted. I do pray for God’s will to be done with my eyes, but I’ve certainly prayed with a broken spirit asking to see. I’ve had people tell me that if I’m praying using anything other than the phrase “God’s will” that I’m praying wrong because I could potentially be praying against His will, but I don’t find that in God’s word. In His word, I find that I can pray for what I want. I just have to understand that sometimes my wants are not God’s best, and I have to follow where He leads.

So that’s the new part of my journey. It’s a little scary, but I’m excited to see how God can take this and turn it into something that glorifies Him. I know He is able!

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