Monday Motivation: New Hope

Friends

Last week, I shared the angst I encountered when I sat in that dreaded exam chair  during my yearly eye appointment. But there is a Part 2 to that story, and this part is the good part!

 

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“I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth…”

Isaiah 42:16 – NIV

 

I have endured yearly eye appointments for thirty years. Most people get their eyes checked yearly, but for me, these appointments are never pleasant. For most of the other 364 days of the year, I can set my eye disease aside. I can let it go.

 

It’s not that I don’t think about my legal blindness sometimes. I remember it when I knock over a drink for the third time that day. I recall it when I can’t figure out the buttons on our new camper’s microwave. I think about it when I have to find a friend to decipher the size label on the measuring cups I rarely use in our camper. I know it when I open my eyes each morning.

 

But these things, while a little frustrating or disconcerting, don’t really bother me anymore. They are just part of life. I have learned to sweep them aside and consider my wealth of blessings instead.

 

I do that pretty well 364 days of the year. It’s that 365^th day that sometimes gets me. It’s the day when I have to face the eye chart. It’s the day when I have to submit to the retinal photographs. It’s the day when I have to face that awful visual field test. And…it’s the day I have to discuss the state of my eyes with the retinal specialist. While this year’s appointment began with a bit of a PTSD moment, things improved dramatically when I met with the doctor.

 

Several months ago, I had spit some saliva into a test tube and sent the package off for genetic testing. My results were back, and this recent eye appointment was planned to discuss those findings.

 

First of all, I like my new doctor. This was my second visit with him, and I like his easy-going manner and unruffled approach. He is an inherited retinal disease specialist, so he is well versed in my retinal degenerative disease, retinitis pigmentosa (RP).

 

My doctor explained that the genetic test results showed that I have two copies of a gene with the same variation, and that gene has been proven to cause RP. Apparently, my specific variation is in a different spot on the gene from most other cases, but they have found a few other people with the same changes. The doctor believes this is the gene responsible for the disease.

 

This was both interesting, and a little encouraging. It felt like finding a thief that has been stealing from you for decades. You can’t get back your stolen goods, but it feels good to identify the culprit.

 

The doctor offered me a mini-tutorial on genetics. He explained that I had two copies of the affected gene, one from my father and the other from my mother. It stands without question that I passed one copy of this unhealthy gene to my only son Jonathan, making him a carrier of the disease. But here’s the good news. In all likelihood, my husband Eric passed my son a healthy copy of this same gene. The odds of Eric having the same diseased gene are incredibly small. The doctor was adamant. Jonathan will not contract the disease. Whew! What a relief!

 

He went on to explain that while my son received one diseased gene from me, there is a 50/50 chance that he might pass on his healthy copy of the gene to his offspring. If that happens, the disease could die out of our family line within a generation . At worst, future generations might be disease carriers, but the likelihood of any future descendants having this eye disease is supremely small.

 

Yes, good news indeed! The information answered a lot of long-standing questions for me, and offered considerable reassurance. But that isn’t all. My doctor shared some encouraging updates on a clinical trial using stem cells to restore vision in the damaged areas of the retina. He discussed that I might qualify to participate in this research as it moves into its next phases. It’s at least a year or two away and nothing definite, but a promising possibility!

 

As I walked out of the eye center that morning, I thought about how I had started the day filled with fear and anxiety. Just a few hours later, I was exiting through those double doors feeling  a very different emotion, hope. Yes, hope! No promises, no certainty, but clearly, encouraging news, the best I have had in this long journey through blindness.

 

When I first sat down in one of those awful exam chairs on that October day in 1993, there were no treatment options for this devastating disease.. Save maybe some help from Vitamin A, there was nothing they could do except to tell me it would get worse. Now there is promising research on the horizon using stem cells and gene therapy. Not only that, there are tremendous Technology options available to me now that were not even thought of back then, vision aids that make my life full and productive.

 

But here’s the really important thing I realized while sitting on my front porch the morning after my appointment. While it is so wonderful to think of this research and potential treatment, so uplifting to ponder the possibility of some restored vision, I know that even if none of that ever comes to fruition in my lifetime, even if my eyes continue to decline and I lose all my vision, it will be OK, because God will be with me. I know this in the far reaches of my soul. I do not walk this road alone, and I never will. Of this I am certain, God can, and He will, make the rough places smooth.

 

PRAYER

O Merciful Lord, You are good, and Your steadfast love endures forever. You bestow upon us a crown of beauty instead of ashes, joy instead of mourning, hope instead of despair. Thank You for never leaving us, nor forsaking us, and for making the rough places smooth. To You, be all glory, honor, majesty, and praise.

In the Wonderful Name of Jesus, we pray,

Amen

 

Blessings,

Anita

 

-APS 5/6/2024