The “In Between” Exists…
And It’s Now Where I Live
We all find ourselves in between at times. Whether it’s in between transitions in life, in between jobs or in between growth. That “in between” is awkward. It can be scary and downright challenging to fight your way through. The fact is, most of us are “in between” something in our lives a lot of the time. We may not realize it but I suspect that if you step back and look at your situation, you are.
A couple of weeks ago, a good friend of mine, Patrick, was visiting some friends in Scottsdale, Arizona. We had arranged to meet at his hotel and after nearly 3 years since our last get together, we were pumped to re-connect. My wife and daughters joined me in the meeting and I was elated to have them there by my side.
In the last few months, things have been hard. My vision is deteriorating and it’s becoming very clear that the progression of Retinitis Pigmentosa has not slowed at all… at least not yet. I have been struggling with work as my 32″ monitor isn’t as clear as it was a year ago and I have been struggling throughout the day with simple tasks. When you don’t see very well or very much, the simplest of things become a challenge, such as a dropping a piece of ice on the ground. A sighted person bends over and picks it up and moves right on with their day. For someone with low vision, that drop of ice turns into a scavenger hunt of epic proportions. It starts with the sound of where it may have gone, then in the effort to find it, you drag your feet on the ground and undoubtedly kick it. As it slides across the tile, you hope you can hear where it stops but usually lose it. After some time, you find it… or you don’t.
The reality of our situation has been more real than it ever has been. I’ve accepted that I can no longer drive a car or enjoy picking up my daughters at school. I’ve accepted that going to the grocery store and actually getting what I need, well that is a task that seems quite impossible. I have accepted my cane and use it… a lot. In fact, I take it with me wherever we go. Even in familiar places, it’s with me. I have found that having it with me calms me down and provides me reassurance that if the power went out, I wouldn’t be standing there like a lost dog.
In the past few months, my wife has battled, hard. She is watching her best friend go blind. Daily. She has a new role in our house, family and relationship. She is our protector, she is our driver, she is our rock that keeps us grounded and so, so much more. She is truly an amazing woman. She has been battling through the acceptance of my vision loss and all of the additional feelings, fears and realities that it brings.
In the past few months, my daughters, now 7 and 3 years old, have been battling. Not quite in the same way as their amazing mother but nonetheless, battling to accept the reality that their Dad is different. From “why can’t you pick me up at school like other Dad’s?” to “Are you the only blind person in Arizona?”, their attempts to grasp and understand the reality is real. Peyton, my 7 year old is an amazing helper, a fantastic guide and a true friend to me. However, she does not like to see me get hurt, have accidents and she certainly does not like the fact that it’s getting worse. Lyla, our spunky 3 year old, has now begun to dart out of my way as I walk into a room or through the house. She lovingly touches my eyes at night and I can feel that she hates to see what is happening. For her, up until recently, all Dad’s couldn’t see well. However, she has now learned that is not the case.
Back to our meeting, it was important to have my family with me, not only because I love time with them but because I wanted them to be around Patrick as well. I wanted my daughters to see that it isn’t just me that is blind but others as well. I wanted my wife to talk with his wife and have the opportunity, much like myself, for a very different conversation than the ones we are usually having with friends and family. We arrived at the hotel, which was beautiful, and Patrick and Carolyn were waiting for us out front.
We made our way to the pool area, got the kids set up with some activities and started catching up. Conversing with a fellow friend of low vision is unique. The conversation is not your average ordeal, it is understood by both parties in very different ways. The smallest of things are shared, such as not using traditional wine glasses and now plastic due to breaking all of the other ones. How we place our waters on the ground or table, ensuring it does not fall off an edge, it’s shared and understood.
Patrick is a great friend. He has been a friend to me for many years now and is truly an inspiration to me. During our chat, he recommended a book called “Blind Ambition” by Chad E. Foster. He said that I needed to listen to it and that he found it very helpful in understanding more about RP and what I am going through. Now, I’ll be honest in sharing that I don’t read as much books as I should. Between my love for music, inability to read the written words and a busy schedule, I don’t make the time like I should. I am going to be changing that as a result of my experience with “Blind Ambition.”
We enjoyed several hours with Patrick and Carolyn. We spoke of life, business, finances and how to work through the next steps of blindness, undoubtedly awaiting us on our journey. Patrick offered some fantastic advice and it was not taken lightly. I hear his words and truly embrace them.
We headed home with my wife at the wheel and ended the night in our jacuzzi, soaking in the clear night sky that Arizona provides and discussing our experience with Patrick and Carolyn. I love my wife.
I retuned to my routine on Monday and got back to work as usual. Later that day, Patrick texted me thanking us for joining them and reminding me of the book that I needed to start. I appreciated his reminder and push to get on it. I started the book on Monday and could not stop. I had my earbuds playing it while I vacuumed the house and had it playing off and on throughout my work day. In it’s messaging, I was inspired, saddened and overwhelmed. The author, Chad E. Foster, lost his vision from RP and while his story is different, it’s very similar. I related to him on so many levels and through the words he shared, I was overwhelmed. Truly overwhelmed.
If you are looking for a book, I highly recommend it. You can find it on Amazon.
After completing his book, I reached out to Chad and thanked him for the time in constructing his book, and for sharing his story. Chad, who I did not expect a reply from, did and a conversation began that I hope continues. He’s a great guy, an inspiration and a motivation for myself.
The “In Between”
After my time with Patrick and reading Chad’s book, I came to a realization. My life, as I know it today, is living in between the life of a sighted person and a blind person. I can still see things like trees, cars on the road and my family. I can still cherish a sunset or christmas lights strung up on a home. I can still see a sunset, even though I don’t get the full experience of all of the wonderful colors. I can still see flowers and plants blooming. However, all of those experiences are not the same as they once were. They are different because I can’t see detail anymore.
I have lost that ability to see definition. I have lost the hard edges and clear contrasts. I have lost that ability to clearly know what colors are around me. I have lost the ability to clearly see a persons face and their reactions while we converse. I have lost that ability to move freely, without fear or reservation.
I am Living In Between
This part of my life, my adventure and my story will be a chapter, it will be something I remember because to be quite honest, it’s fucking hard. It’s hard to push forward everyday with everything getting harder. It’s hard to be motivated to work when the work causes so much pain in my eyes. It’s hard to be driven to color with my kids, when I no longer see colors. It’s hard to look forward to a dinner out at a busy restaurant when all you can do is hear the chaos around you. It’s hard to look forward to gatherings when you know you won’t know who the hell you are talking to, unless they tell you or my wife whispers it in my ear. It’s hard to want to do a lot of things when reality continues to change.
I am in between myself and my future self. I am battling through the changes and evolution. I am lost and found 100 times a day. I am confidently unconfident.
If you are in between, I’m with you. I hear you. I feel you.