I love hiking and nature. So for Mother’s Day, I told my husband and two daughters that I wanted to head to Discovery Park—a huge wildlife park in Seattle that features a variety of hiking trails, including one that takes hikers down to the beach and to a very cool, old lighthouse.
My daughters ran ahead and took a shortcut down the bluff while John and I picked our way down a narrow trail packed with at least a couple hundred scattered wooden steps (with very spotty railing) that eventually led to the beach.
On top of the uneven wooden stairs that seemed to spring out of the dirt trail without warning, the trail was surrounded by trees that shaded the area and made the light dim. I managed it—but only because John was at my side, holding my hand and calling out to me whenever we neared a step.
It made me realize how much energy I devote every day to this disease, and how much I just want to not think about it. So here’s my goal for the next week and my challenge for all of you: Let’s forget that we have RP for an entire week. Let’s pretend to be normal-sighted people and focus on all of the things that we can do rather than what we can’t, or what we struggle with. And then let’s all share our experiences here on this blog a week from now.
Along those lines, I just want to say thank you to all of you for the positive energy you are always sending my way. On the days I get a little discouraged by this lifelong eyesight-saving quest and the enormity of it all, it’s the words I receive from some of you that help me to keep plowing forward. It’s hard to battle this disease alone. But together, there’s No Stopping Us.
Great Idea Ingrid! When I got sick in ’09 with scleroderma I was obsessively looking for a cure. That continued until ’12 when Kai was diagnosed with RP. I instantly forgot about my issues, and focused on his. It does take a TON of energy! Thankfully, Kai is an amazing kid and he just deals with things as they come. He’s done such a great job of adapting. I am always praying for a cure, but I’m also learning from Kai to let go a bit and “let it be.” Blessings this week. Kim
Thanks, Kim….yeah, sometimes I think we just need to take a break, not think about it and ENJOY everything we can do.
HOpe all is well with you and Kai…and that you had a wonderful Mother’s Day. Best – Ingrid
Hi Ingrid,
Great idea – it can all get very overwhelming at times but one must push forward and keep going. And keep believing. So, here’s to a week of just focussing on what is around us and enjoying it xxx All the best – Jana
Ingrid,
I love the idea! I remember distinctly when I went from not thinking daily about having RP, to it becoming a daily awareness or struggle. I often long for past times when I could just forget about it.
I love your idea of leaning into what I can do– saying yes, even when it’s challenging. I’ve adopted gratitude for the ways RP has pushed me to make the most of life and what I can see–I’ve traveled more and created an amazing “walk-able” life because of my RP. Sometimes I get frustrated because of all of the things I can no longer do– but, your post is a good reminder to focus on what I can see & do!
I’m with you Ashley. I’ve created an amazing walkable life too…mostly anyway.And I love the gratitude focus. I have a friend who fights depression by keeping a gratitude journal—and it works much better than any medication she’s ever taken. Please share your experiences from this week so I can post them on this blog next week.
Best – Ingrid
P.S. One thing I’m doing this week that all normal sighted people do? Serve on a jury. And so far, no one even knows I have RP. I’ve been to manage my way around the obstacles just fine.
Hi Ingrid,
What a great idea, I love reading your blog as it is always so positive when sometimes having RP can feel like something that defines you as a person. I strive to be as normal as possible and to keep doing things I always have done even when fear is knocking heavily at the door, I just keep pushing myself on and finding ways around my difficulties. Some things like driving I will always miss but I always get to have a drink while my partner and I are out so there are some silver linings. Sometimes its more the embarrassment more then the not being able to that holds me back and I just keep pushing through.
Cant wait to hear some of the things people do. Have fun
Thanks for your note, Keane. I can’t wait to hear from you on what you enjoyed and discovered this week as well. Please share them so I can get it up on next week’s blog. Here’s to a fun, adventurous week.
I also think this is a great idea! A person’s mindset is so important when it comes to healing – and taking a break is vital to a healthy mindset. I hope you enjoy this break, and that it helps you immensely. All the best, as always.
Thank you, Alysa. You are such a gift. Hope you are enjoying your days with you new little one..can’t wait to meet him at some point. Sending a hug to you and him. xoxo – Ingrid
Hi, Ingrid…Excellent idea. What I believe all of us should recognize is that we can be in a troth of a self-fulfilling prophecy accelerating the progression of RP. So I am going to take this opportunity to enhance and strengthen my positive outlook. Making efforts like this puts everything in perspective. Stay well, Joseph
Can’t wait to hear your thoughts on the things you enjoyed and focused on this week and send my way so I can post them on the blog next week.. and can’t wait to see you and Karen in late June. I agree… so much of this comes down to positive energy.