This disease sucks. Some days I feel like my vision hasn’t gotten worse and others, well I know it has.
For the past 10 years, i’ve “dealt” with failing vision. I assume a lot of things. I know that the sky is blue, I know that the trees are green and I know my home like the back of my hand. In the past 5 years, i’ve been doing more and more assuming. Assuming that the path is clear, assuming that nothing has changed and assuming that I can see what I used to see.
On Saturday of this past weekend, my family and a friend, with his two girls, attended an Off-Road show in Del Mar. My 5 year old daughter had been wanting to see trucks and from a lifetime of being involved with off-roading, I was eager to show her how rad it can be, as well to show her a big part of my past life.
We attended with the help of my radical wife. My daughter gathered stickers (just like her Daddy did) with her friend as the younger kids took in all of the stuff to look at. I loved the sounds and smells of big motors and race gas, transporting me to a younger day in my life. Seeing Peyton’s face light up when the motors would fire up, just made my heart sing.
I didn’t bring my cane and I should have. Not necessarily just for my own navigation, but to let other people know that I don’t see well. I ran into about 10 people, tripped countless times and found myself stressed when the kiddo’s weren’t right in front my sight. It’s a scary feeling not knowing where your kids are, as i’m sure most parents can understand. The only difference for me is that 99% of the time, they are right next to me, i’m just unable to see them.
On top of the navigation challenges, I continue to despise public restrooms. After a couple of cold beers, I needed to make a stop. My wife found the restroom and I walked in. Now, not a single public restroom is the same and they are all challenging, but this particular restroom was pitch black, well it was to me. I stood awkwardly against a wall allowing my eyes the 5 minutes they need to adjust now (due to the RP) and felt like an idiot. I felt helpless and scared.
Luckily, my close friend who was with us, had to go as well. My wife watched the kids and the timing was perfect. He walked in asking if there was a line, I told him that I didn’t know. While I couldn’t see his face, I could sense his confused thought. I mustered up the courage and told him that I couldn’t see and I asked if he could help me find a stall. It’s as embarrassing to type these words as it was in the dark restroom, but it’s the reality of this whole process. Johnny is an amazing friend and has been for over 10 years. Without a single hesitation, I took his right elbow and he lead me to what I needed.
By the time I was finished, my eyes had adjusted letting me see that there in fact lights on in the restroom and it wasn’t that dark at all, but lit well enough for anyone with normal vision, just not my vision.
It’s hard to ask another man for help and it’s getting more and more frequent. My wife helps me 1,000 times a day. She does things that I probably don’t even know about because she does so much to help me and make me comfortable. My daughter, at almost 5 years old, is the same way. She cleans up her toys, without being asked. She moves her items into corners and out of the way, without being asked. All so Daddy doesn’t fall or hurt himself. I’m so lucky to have them and I hate the burden I am becoming as my vision fails.
After enjoying the highs and low’s of an outing, I am usually exhausted and drained. My eyes are tired and i’m tense from the stresses and scares of not seeing or knowing all of what’s happening around me. It’s insane how tired it makes me…
We returned back home and I was elated to be back in “my comfort zone.” Then I was once again, brutally reminded about my failing vision. A chair at our dining room table, wasn’t put back in it’s place. Now, I was the one who moved it so Peyton could sit next to her friend Brielle as we ate dinner. I moved it and I forgot to move it back. It wasn’t anyones fault but my own.
As I worked on cleaning up, I felt a toy under my right foot and bent down to pick it up…
The corner of the chair found me first.
I tagged it hard, almost forcing me to pass out. It hurt pretty good and my initial fear wasn’t the blood or the pain, it was if I had just damaged my vision more. Let me clarify, on top of my terrible vision and the Retinitis Pigmentosa, I was informed by my retinal specialist that my retinal nerve is thinning. As a result of that thinning nerve, he advised to NEVER hit my head and to avoid all trauma to my head at all cost.
As the blood ran down into my eye, it became cloudy and I was terrified that I had just lost sight in my left eye completely. With such little vision remaining, that is a fear that I’m just not ready to feel yet. I can’t lose more right now.
The bleeding slowed and my vision cleared thankfully, but the harsh reminder of the ordeal has stuck hard. I need to slow down, even more… I need to triple check my surroundings, at all times… I have to start using my cane and assistive tools… now.
My wife, daughter and friend were there for me as I dealt with the reality and pain. One could only hope for hugs, compassion and understanding when dealing with reality and a throbbing eye.
The following day, I was presented with the opportunity to do nothing for about 30 minutes and I took advantage. I opened a cold beer and sat in my beautiful backyard with the San Diego sun warming me from a cold winter. I reflected… heavily.
The reality of my vision loss is real and getting more real. I need to adapt, but in the adaption, I can’t fall victim to the reality. I have fought my entire life to “assume” and figure things out and I have no doubt that is why and how i am where I am today. Complacency can not be accepted.
However, with this ongoing fight, I do need to find the balance of perseverance and acceptance. I can’t “pretend” that I can see what I saw 5 years ago. I can’t pretend that I see what I saw last year, because unfortunately, it is different now. It’s not as clear or vibrant. I don’t see as much in my field of vision and I most certainly don’t see as well. The darks are darker and the lights are blinding white. The time needed for my eyes to balance between the light and dark is taking so long now-a-days, it’s honestly boring to wait.
Today I walk with a black eye full of scabs and it was it is. I don’t have a cool story of a fight or heroic effort, I just can’t see. and I hate every single second of it. This disease is brutal and it constantly diminishes one’s self worth, confidence and abilities. #RPSucks
I hope that one person reads this, who just had a bad day, like this day. Know you’re not alone. Know that you’re doing a great job and this, like all storms, will pass. Once I get to the other side of this step, i’ll be sure to share my discoveries along the way.
Keep scanning and slow down, these are my new rules to live by.
God bless you Andy! You are on a journey that may seem cruel but I know that if anyone can learn to adapt and deal with it, you can. You have amazing parents, a beautiful family and a passion for life. Let them be your eyes. There is a plan for you, and while you may not know why you were chosen to take this path in life, you will be ok. And I will continue to pray for a cure.
I couldn’t agree more Lisa and thank you so much for the positivity and kind words. They are greatly appreciated.
Hi Andy, it’s Debra Kerper (you just did the story about me). My heart aches for you and, you’re right, RP sucks. Most disabilities do but some are harder than others and I Think losing your vision is probably among the worst of them. Although, I do know some blind people, clients among them, who do remarkably well. Becoming disabled has a huge learning curve and, in time, you will conquer it partly because of the amazing person I’ve heard you are and partly because you just have to. You have a beautiful family and those two little girls who need you and don’t care that you have a problem. Since I’ve had my second amputation, I’ve taken several falls with two resulting in breaking each hip. So, first you cry and then you laugh and then you say the good news is “I’m no longer on the floor or ground”. I have retinal degeneration from taking a drug for too many years. They thought I had RP. My eyes take a very long time to adjust from dark to light and vice versa. I have a terrible time differentiating curbs and other obstacles. Very scary especially at night when I suffer from night blindness. So, I promised to not go out in public without a walker which I hate. Just like you need that cane. You’re right, at least people will treat us with a little more compassion when they see these aids. I’m kind of rambling here but I want you to know that I care and understand that this is the toughest thing you’ll ever have to deal with. The day will come when it won’t be so bad and you’ll see so many wonderful things that will eventually come from this challenge. I’ve known you dad for a very long time and I love your mom. If I can ever help you by talking or whatever, please let me know. You’re going to be okay.
Debra, I feel like your story has about 10,000 more challenges than mine will ever have. You’re an inspiration and truly a testament to the power of never giving up. That is a value I hold true and will continue to demonstrate to my daughters so they know that is just not what we do. Thank you so much for your words, insights and time in reading this. I truly appreciate it.
Debra, thank you so much for your comments. If anyone knows the struggle we face, it is you. Andy, dude, I love you. I only wish I could be as honest as you dealing with these things. You are helping me learn.
Love you Dad.
Re-reading this, I realize there must be an underlying constant feeling of stree and panic as you move through daily activities. (Much like when I have a bad dream). My heart and prayers go out to you. God bless you for sharing your experiences with us. It gives us more understanding and empathy.
Edi, thank you so much for the comment and time in reading this post. I honestly don’t expect many people to read these posts but it’s always a great feeling when they have a positive presence in the world. It’s pretty wild and you are 100% correct. Most days are always a surprise of some sort. I typically have my first surprise before I get to my desk for work and i’ve been challenging myself more and more to find the positives in it, instead of the frustration. I really appreciate your time and thank you again for your words.