This week I’ve been on the upswing of finding out some hard news: impending blindness on the horizon.
Though Retinitis Pigmentosa might be the diagnosis, I do know that hard things can become the New Normal and that God uses everything, everything, for good. This has been comforting to remember and as my husband had to grab hold of my face and remind me:
this is not the worst thing that’s ever happened to me.
(both good and bad news! ha) I’ve already conquered many of my personal mountains. I’ve learned to live with things I never thought I could possibly handle. I am stronger than the Melinda of the past. So overall, yes, this is very good news. It’s not the worst thing… both past and present.
And as always, laughter has taken a key role in the ruck (anyone else sick of calling every hard thing a “journey”?). I have found numerous reasons to laugh.
The first being the beautiful, hilarious innocence in which an 8 year old boy took in this news. We gathered the kids around and once again told them, “We have something to tell you.” I slowly and painfully told them about Retinitis Pigmentosa. They’ve met my grandmother, so I started with, “You know how when you met Grandmother Linda, she might have complimented your hair, but she also couldn’t see the entire room?” They all nodded yes… they remembered. I recapped what they’d already been told about RP and then said it: Well, that’s a genetic condition. And turns out, I also have it.
One of the first things my stepson did was make fists out of both hands and line them up in front of his eyes like a tube. “YOU MEAN THIS IS HOW YOU WILL SEE, MELINDA???” he said. He looked all around the room that way, through his makeshift tunnel. “Wow, that would be REALLY HARD!” He added.
I could only smile and nod and say, “Yup! You got it! Sure will be!”
The hilarity continued the next day when his friend came over to play. He told his buddy right away, “My stepmom is going to be BLIND!” And both boys did the two-fist-tunnel-vision. Again: I smiled, nodded, and said, “Yup! Sure am!”
The way this kid was able to take in that information and do something no adult in their right mind would ever dare … well, it was comforting in ways I’m still smiling over.
Seriously – I highly recommend telling devastating, life altering news to a second grade boy. Just try it and let me know if their beautiful curiosity, blatant words of reality and thought process gives you any comfort.
There were many other reasons to laugh … I just didn’t know it yet when I sat in the chair and first heard the words “Yes, you have it” spoken out loud.
And here’s why, once I thought about it, I’m actually sort of cut out for this:
- I love to be near people. Starting at a very young age, I had very little concept of physical boundaries. I specifically remember, at around age 6, my mother saying very kindly and calmly in a shopping mall, “Melinda, could you please, for a few minutes, just try not bumping into me?” I always walked closely, and rarely in a straight line. When I told my husband this story he said, “Ummm… YEAH. I can relate to your mom.” What??? Yes, he assured me. I still have this tendency. So compared to someone who needs tons and tons of personal space and doesn’t have physical touch right at the top of their Love Language list… this is a plus! I can do that part! I can totally handle having someone right beside me to lead me through a room. Just ask my husband.
2. I am not afraid to ask for help. If I have a struggle, I send the mass text out to my group of prayer warrior friends. If I need to cry, I know who will let me in their door with no questions asked – and I’ll head on over. I speak my failures out loud and I probably tell everyone around me more than they ever cared to know about all the ways I’m imperfect and need help. I’ve never EVER been a “suffer in silence” type… ohhh no. I’d have spontaneously-combusted by now. I know that for me, silence and seclusion are works of the devil (literally). I love my community and I thrive when supported by those I love. So many people have reached out and offered their help. I’ve mostly given the answer of, “You can drive me to the grocery store when I lose my license! That’ll help and it’ll give my poor husband a break!” I say this to laugh, and to remind myself that I’m not blind yet. Not by a long shot. (Shown below: just a small example of the people I’ll be calling up for said ride… including my beautiful step daughter, who will be an adult by then!) (if my progression is anything like I’ve seen in my family… which gives me another decade or so of “normal” things like driving)
3. I have the grit and determination of my grandmother. (And sense of humor, I hope.) Seriously. If you read my last blog, you will see my grandmother’s full message to me about this diagnosis. But here is another small snippet: 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. She is truly the most beautiful woman. She only has what I call “smile wrinkles” and she has aged gracefully. She does not let blindness win. And neither will I. Being that this RP gene has been traced all the way back to my great-great-great-great-great grandmother… (YES, FIVE “GREATS”)… I think I am in good hands. I think I can do this, too.
Right here is my grandmother and her other half (her eyes)… this is the woman who once sent the whole family a photograph of herself in the driver’s seat of a car with her cane sticking out the window. Laughter ALWAYS wins!
4. My other senses are huge in my life. Okay, you know that game we’ve all played in elementary school, Would You Rather? Anyone ever ask you the old classic: Which would you rather be, blind or deaf?
I ALWAYS ANSWERED DEAF.
That’s not what was handed to me in this life. Therefore, my answer from elementary school has changed. I wouldn’t rather have either go away, but I would rather deal with my reality in a healthy way. Therefore, it’s the senses of smell and touch that I’m focusing on here. (And I really do love hearing and tasting as well.) I’m blessed enough to be someone who really does have so many things I love to smell. My husband being the #1 thing. Seriously. God gifted me someone who was 100% made for me, and just one way I know this is because he has never once smelled bad to me. His breath? I’d love to jar it up and take it with me. His smell after a long run? Might as well be wildflowers, and it doesn’t ever make me sneeze so it’s even better. It’s a little weird, but it’s a gift and I won’t ever stop being thankful. (It may look like I’m kissing his cheek here but I’m probably just breathing in as deeply as I can.)
5. I have a God who will take care of my path. My favorite song growing up has always been “Thy Word.” Did you ever sing it during Sunday School?
Thy word is a lamp unto my feet and a light unto my path …
Nothing will I fear as long as You are near …
I have a God who has lead me down each path I’ve walked. He led me to a town where I knew ZERO people and made it my home, filled with friends and love and family and experiences. God took a broken heart and made it laugh and smile. God took someone who would always be wondering aimlessly had it not been for guiding me into this very moment of my life, and though I may be blind in this life, I will never be lost. I have a God who promises me that “the light shines in the darkness, the darkness has not overcome it.” (John 1:5)
I have a God who hand picked a family for me, though I never would have guessed in a million years it would be in a small town in Wisconsin.
So that being said, I think I’ll be okay. In fact, I think I’ll be more than okay. I think I might even thrive in whatever life throws at me, even if it’s “worse” than what was just handed to me. I have a new faith — surprising even to me.
Maybe next I’ll write about all of the reasons I am NOT cut out for this….
like the fact that I am the messiest person I know (I think minimalism and organization is pretty key for the blind)…
or the fact that I can in fact see myself swearing harshly in frustration with each glass I might break because I don’t see it…
or the fact that I love looking at my husband’s face and even before I found out I have RP, I’d always take one last look at him before turning off my lamp at night…
And that even in the face of all of THOSE reasons, still I will trust and still I will pray every day for the strength needed to face a future of uncertainty.
Honestly, what other kind of future is there, anyway?
Love, Lou (who walked through Whole Foods like this after my eye appointment because my eyes were so dilated, I literally could not take those sunglasses off, even inside.)