I’ve been blind to many things in life.
I’ve been blind to true intentions when my own preconceived notions get in the way.
I’ve been blind to love when it was holding me.
I’ve been blind to God’s goodness when I could only see my own pain.
Now I’m having to ask myself: what will I do when I am actually blind?
I once wrote a poem in college called “Where I’m From” (you can read it here). It was an assignment and I felt like I did a pretty good job of describing myself, my life, my family. I ended this particular poem with this line:
I am from a family where blindness means seeing more than anyone else
Why did I write this? Why am I wondering what I will do when I am actually blind? Because a week ago, I found out I have an inherited genetic eye disease called Retinitis Pigmentosa.
You’ve probably never heard of it.
But given the fact that my great grandpa Bob, my grandmother Linda and my uncle Shannon all have this condition, I’ve known about it my whole life. On my dad’s side of the family we call it “RP” for short. We are all aware of etiquette for the blind. I grew up with a grandmother who had to scan my face to see me. I knew to be acutely aware when she was around (though she needs very little help).
RP typically starts with night blindness. It did for me. I haven’t been able to see in the dark since middle school. I’ve got the scars to prove it. I’ve walked straight into doors, I’ve tripped over large objects… sometimes my husband will hold his hand in front of my face after the lamp goes off just to test it, because I’m sure for someone with great vision it’s hard to comprehend the fact that I just cannot see it (the same “game” my twin sister and I played when we shared a room). Nope, still can’t see it!
Though I had this issue, I never chalked it up to having Retinitis Pigmentosa. That was always safely tucked away in the corner of, I love my blind family members so much and they’ve taught me so much about life, with the caveat of, but thank GOD that isn’t me.
It’s just my rods that are screwy, thank you very much. My cones are fine. (Did you know that your eyes are made up of rods and cones? Rods for adjusting to light, cones for seeing color, to put it VERY simply.)
Knowing what I know about this condition, blindness has always been my worst fear. I couldn’t even finish the book “Blindness” because I had too many nightmares. If someone in a movie loses their vision, I weep. It’s just something that has always touched me deeply: having family members with RP caused my heart to grow and compassion to be known at a young age – but with it also grew fear. Because I know what it looks like. I’ve seen it (ironically.)
I know that I am facing a tough road. I know that I am likely to be legally blind by the time I am 40, or if I am very lucky, 50 years old. I know my peripheral vision will gently fade until I am left seeing through very little tunnel vision. This has left me in a state of bouncing between mild panic attack and also a trust in God like I have never experienced.
I’ve now been faced with my two greatest fears in life: infertility and blindness.
Come at me – ’cause I’m pretty sure I’m now invincible.
Because here is something else I know: I know that my great grandpa Bob might be the happiest human being to have ever walked the earth. I know that my grandmother walks into a room with more light and beauty and grace than any women I’ve ever seen in my life. I know that my uncle has a gentleness to him that I always admired and wanted to lean into.
I know that I will survive this, even though it’s the scariest road I’ve had to imagine walking.
When I sat in the chair at the eye doctor, I was pretty sure I already knew. My vision has been changing and I’ve noticed it. I’ve mentioned it to my husband and my parents in the last year. I’ve missed things in my periphery. The best I can do is describe this sensation as a cloudiness that isn’t cloudy at all… it’s just missing. There are things missing from my vision and my brain is making up for the blind spots. Literally.
So I wasn’t super surprised when I all but failed the peripheral eye test at the doctor. But I did feel a punch to my gut and a rise in adrenaline when the doctor said, “Yes, Melinda, your suspicions were right. There are bone spicules and clumps of pigment in your eye. You definitely have RP.”
I probably sat in that chair for ten years, in the split second it took for me to understand her words. I appreciate her response as I teared up and tried to bravely say, “Okay.” She said, “I’m so sorry. I’ve never had to tell someone this before.”
Probably because only about .028% of the population has it.
Which makes my family pretty rare and pretty special, don’t you think?
Oh! And to top it all off, my dad also has this condition. That’s why I finally honored my suspicion and made the appointment with the eye doctor. He called two weeks ago to let us know that he, too, has RP. He has “late onset”, which is practically unheard of. We don’t know when he will lose his vision, but he was told “Bruce, if you live to be 100, you’ll definitely be blind.” Okay then! My outside-every-day adventurous dad who loves to hunt and be independent is going to lose his vision too.
Needless to say, it’s been one hell of an emotional week.
What will we do when we cannot see?
I’ve wept for my dad. I’ve wept for Bob, Linda and Shannon. I’ve wept for myself and the way I’m having to rethink my future.
I mean, this changes everything. It changes everything for my husband, too. We probably won’t be climbing all of the very highest peaks in the world or living out in the middle of nowhere together when we become “empty-nesters” in ten years. My husband, who I can barely keep up with in the grocery store, who went snow shoeing last night in what felt like -40 degree weather, will have to slow down and help me along. (oh, the guilt.)
But like I said before, the goodness here is not lost on me. I am just a little bit blind to it right now. The goodness of God’s glory is hidden in my periphery momentarily as I soak in this news and this life changing information.
Can I be a badass blind woman? I believe I can.
Will it be harder than I ever thought life could possibly be? Most likely.
Will I find joy in places and ways I never would have discovered without this condition? Most certainly.
Will I have to battle negative thoughts and fear daily, from this point forth? 100% yes.
My very own blind grandmother can still see just a little bit. She is typically the one to find the hummingbird hovering in a nearby tree. She is likely to notice that you got a haircut before anyone else. She takes her time to scan a room and then slowly walks through it. She is the first person to make you laugh. I could listen to her talk for hours because she is the best storyteller on the planet. She is beautiful.
And the day I found out I have RP, she TEXTED ME! (Technology is a friend to the legally blind!) This is what she said:
“I am so proud of you. So so proud. I have never been so shocked as when your dad told me he has RP except today when he called me and told me that you have it, too. I was speechless. I finally said, “and now we move forward.” And he said, “YES!” A big and strong yes. It’s what we need… strength! And by golly you showed me you’ve got it: that grit, that strength, that attitude, that faith, that can-do that has been handed down to us by our ancestors along with this RP. They had no choice over this RP thing but they DID have choices over how they would handle it. I give thanks for that. Thanks that my sons have it and that it has also been passed on to my precious granddaughter…. I love you, you have given me hope and strength. You’re made of the right stuff! You make me proud to be your grandmother! And Grandpa Bob would be even prouder of you than he was, period.”
I was so blessed by her words. I was comforted that yes, I have grit and strength and attitude and faith that have been handed down to me through blood.
I will write more soon, once more has been processed. I will write about what it was like to tell my stepkids about this (and the hilarious innocence of the way an eight year old boy takes information in). I will likely share more about how this week has been pure survival. I will write how my husband is helping me to be strong in new ways that I never knew were even possible. I will tell you about how my priorities have changed overnight and how I’m seeing what truly matters. I will tell you how I now read the Bible, because every metaphor about God’s path and direction and sight and light is different to me now. I will tell you about how hard I’ve cried (even though you’ve probably already guessed it – a LOT). I will tell you more about how I’m really sort of made for this (yes, it’s true.)
But today, I’ll end this here.
And now we move forward.
Lou (who thinks this is the cutest photo ever taken: my twin sister, Bob, and me)