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What is it like to live with Retinitis Pigmentosa?

Michael is a self-proclaimed nerd who is originally from Wisconsin and currently resides in Las Vegas with his girlfriend. He is one of the funniest people I have ever had the privilege of talking to as well as one of the nicest. He is an animal lover who has an affinity for cats, enjoys comedy, music, science, and cooking. Despite his loss of vision due to the genetic eye disorder, Retinitis Pigmentosa, he attends college where he studies biology and is living a full life with a great sense of humor.

Michael is constantly asked a lot of questions about Retinitis Pigmentosa but that hasn’t stopped him from being extremely polite and forthcoming with any information you may want to know about his condition. He has an amazing sense of humor about the topic and is a real joy to talk to. I was thrilled when he allowed me to pry into his life and ask as many questions about the disease as I wanted, he really held nothing back and even managed to make it funny. I am excited to share what I learned about Retinitis Pigmentosa, what it’s really like to live with this disease, and how he gets through the really dark times.

What exactly is Retinitis Pigmentosa?

RP is a genetic eye disorder that causes degenerative eyesight. It begins with night-blindness and loss of peripheral vision, and eventually it leads to blindness.

How long ago were you diagnosed and what types of symptoms were you having that lead you to get checked out?

I was diagnosed about 6 years ago at a Lenscrafters. I never had eye problems growing up, so when I got into 3 car accidents in a short period of time, I thought I might need to get glasses. Looking back, I did notice it was getting harder to see at night or in low light situations, but I completely dismissed these symptoms until I was actually diagnosed.

How has your condition changed since your initial diagnosis?

It’s gotten progressively worse, as expected. My field of vision is shrinking, and the night-blindness has gotten way worse. Right now my central vision is actually pretty good, but my peripheral vision is pretty much gone. Adjusting to light changes takes much longer.

Do you take medicine to help prevent further vision loss or to bring back any vision that was already lost?

I do take some vitamins that I hope are helping, but there is no known treatment or cure for this condition. I take a few medicinal mushrooms; Turkey Tail, Cordyceps and Lions Mane. I also take something called Resveratrol, and I take a supplement called Eyebright when I can afford it. I don’t know if any of it helps at all, but it can’t hurt.

Please tell me a little bit about how losing your vision has impacted other areas of your life. I know you are now unable to drive yourself and that is something I have never even thought about before talking with you, that had to be hard, losing your freedom to drive. Has this had an impact on other areas as well? Your job, living situation, hobbies, etc.?

Losing your sight really changes every aspect of life. I bump into things and people all the time, and I hurt myself pretty frequently. I had to start using a white cane, which not only helps me get around, but it helps communicate to others that I have an issue. It makes it slightly less awkward if I kick an old lady or a child. I’ve had to learn to accept help more often. Not being able to drive was definitely a big change. Ride share is available, but it can get expensive, and the lack of real independence can be depressing. My girlfriend tells me that I make a huge mess in the kitchen when I cook now too. Finding work is a whole thing. Not many employers seem interested in employing a blind guy, and I’m sure the lack of transportation is a big factor. It has altered my hobbies a bit, since I tend to stick to activities that won’t get me hurt. Certain hikes are no longer a good idea. I can’t really go to the movies, comedy shows or concerts without someone to help me get around. Just going out in general is stressful now. A general sense of hopelessness has become my sidekick.

How have your friends and family reacted to the changes in your life? Have you had a lot of support?

 I think the whole thing shocked people. I imagine a lot of people probably felt bad for me in the beginning. People definitely started to check in on me more often, presumably thinking they’d have to talk me off a ledge or something. I have complicated family relationships, but I do have some supportive family. My girlfriend and my friend Brian have been my biggest sources of support. They’ve rolled with the punches this whole time and they try helping me as much as I’ll let them.

Sometimes people want to be there for you if you need them but having a medical condition that nobody around you has any experience with can make you feel very alone at times, isolated from people you once felt so close to. Have you experienced this kind of thing at all or do you find that is has brought you closer to people since it gives you something obvious, an icebreaker, to talk about with new people?

I’ve had issues with depression since I was a kid, and this condition did not help. I have to be mindful of my mental state, because it can get out of hand pretty quick. RP humbled me, and it put a clock on my life like a cancer diagnosis. At least that’s how it felt. It drove me to start volunteering more. It forced me to reexamine a lot of my relationships, many of which were/are strained. I think it’s helped bring me closer to people that I care about. It can be a great icebreaker with new people, since most are not familiar with RP.

Has retinal degenerative disease changed your personality? You are one of the funniest people I know, have you always been this funny or has this disease somehow brought your humor out?

I think it has changed me, but for the better. I’ve always tried to be the funny guy since I was a kid, though I’m still not sure if I ever was. I take things a lot less seriously now. I’ve always tried to find humor in dark places, but I suppose this gives me a great excuse for doing it.

I am sure people are curious about your condition and approach you with questions, what is the most common thing they ask you?

I get questions all the time. The most common question I get is “Do you have super hearing now?” Unfortunately, no.

How do you feel about people asking questions?

 I don’t mind questions at all. I actually like the questions when people seem genuinely curious. I had no idea what this condition was until I got it myself, so I totally understand when people want to know more.

Does losing your vision heighten any of your other senses?

I’m still very new to being visually impaired, so this is hard for me to answer definitively. The short answer is no. I have noticed, however, that I focus more on the other senses when I cannot see well or at all. In that way, there is improved acuity.

Do you use a service animal or are you planning on getting one?

I do not have a service animal, but I plan on getting one when my eyes get worse. I love animals, so it seems like a great excuse to get another one. I learned that there are only two animals that can earn the designation of service animal in the United States, dogs and miniature horses. I for one, cannot wait to ride my service pony into the grocery store.

How has this disease impacted your life financially? (vision aides, service animals, swapping out traditional products for disability-friendly ones, etc.)

I consider myself very lucky. Just before I was diagnosed, I was working a great paying job. That job helped to get me a livable disability benefit, which many disabled persons do not get. I spend a lot of money on transportation, since I have to Uber or Lyft everywhere. It gets expensive. The various vitamins I like to take in hopes they’ll buy me more time aren’t cheap either. I don’t spend much money on visual aids or disability-friendly products. I’ve had the same cane for 3 years. I imagine my service pony will be expensive to take care of.

When I was a kid, I remember studying the furniture in my home in case I was to ever lose my sight, this way I would be able to find my way around even if the worst were to occur. It’s easy to think about this for a few minutes and wonder what it would be like but that’s because it never actually impacted my life. If it had, I wonder what I would worry about most, what I would want to remember most. Do you ever find yourself really studying and analyzing every detail of the things you love and the people you love in preparation for possibly never seeing them again? Do you travel more to give yourself the opportunity to take things in that you may not have otherwise?

That’s so funny, I absolutely do. I stare at my girlfriend sometimes, hoping I’ll be able to scan her features into my brain. I stare at my cats, studying the meticulous placement of various hairs in their face, and the endless abyss in their eyes. I even try to enjoy seeing simple moments, like sunsets or nice days. Even a stranger smiling. I feel lucky that I get to see any of it at all. I do want to travel more, but that too can be expensive. In the meantime my girlfriend and I have been attending a lot of concerts and comedy shows, which has been really cool.

Do you ever wonder why this has happened to you and what kind of things may have contributed to it, like asking yourself why me? or What did I do to deserve this? I only ask this because I have asked myself this a million times when it comes to my medical issues so I am curious if this runs through your head at times. Not that there was anything you could do differently to prevent it from happening. I know that at times the mind can wander to dark places and I wonder how dark it gets for you.

I wonder why all the time. I try to find the meaning in it, but I never do. I grew up Catholic, so religion has definitely led me down the “what did I do to deserve this” road. It was probably all the masturbating that did it. I’ve come to cliche conclusions about seeing things differently as a result of losing my sight, but those are short lived and only provide momentary comfort. I’ve always felt like a broken person, so this validated some of those thoughts. It can get pretty dark, pretty quick, so I try to use gratitude as my north when I feel lost.

Have you prepared yourself, your home, your family, or anything else in anticipation of full vision loss? Is this something that is going to change your life drastically again or are you easing into the transition because you know about it ahead of time?

How does someone prepare for losing the ability to see? I try not to think about it too much or it ends up feeling too real. I cling to the hope that I might not go entirely blind, no matter how irrational that is. I don’t think losing it slowly will make it any easier to lose it entirely, but I guess that remains to be seen. I keep thinking I’ll one day achieve some kind of Zen acceptance about the whole thing, but probably not. Hopefully I get better at navigating with a guide cane before then. I do think being completely blind would be a drastic change to how I live right now.

What is your greatest fear about life after you’re completely blind?

That I will be a burden on everyone around me.

What is something that you think would surprise most people about this disease and living with it? What can people do to help?

I think most people would be surprised at how rude and judgmental people are. I’ve been called a liar, I’ve had people wave their hands in my face to prove that I “can see just fine”. I’ve had security guards run up on me and sweat me over my guide cane in my back pocket, thinking it’s some kind of weapon. Most people might also be surprised at how helpful and kind complete strangers can be. Carrying a blind stick definitely elicits some compassion, but the people who actually step in to help are still very few and far between. Even so, the cynic in me is surprised every single time.

Thank you so much for taking the time to answer my questions and let me share your story with my readers. I really appreciate it and am honored that you would let me do this, you are the best!

About Thirty Something Super Mom

Melissa Dixon Thirty Something Super Mom
Thirty Something Super Mom | Website

My journey started after a Crohn's disease diagnosis, inspiring a commitment to well-being. This site shares my distinctive approach to healthy living with my collection of nutritious recipes that boast authentic flavors, mimicking the indulgence of traditional dishes. I love sharing guilt free recipes for low carb, keto, gluten-free, paleo, and the specific carbohydrate diet. I also share tips on natural living, including homemade cleaners and cleaning hacks. I also share my experience as a veterinary technician and pet groomer, to integrate pet health tips, homemade dog food recipes, and grooming insights to ensure your pets thrive.

Beth

Wednesday 29th of January 2020

I've never heard of Retinitis Pigmentosa before. I love Michael's sense of humor and it seems like he is handling it very well.

Ice Cream n Sticky Fingers DFW Parenting/LIfestyle

Wednesday 29th of January 2020

I can relate to your condition. While, I still have my eyesight, I do have to live in constant pain including finding new hobbies that I can do. I've had to adjust my own life. The last few years have been the worst, since my ex-husband thought that my condition wasn't disabling enough and that I was faking about the severity. Yes, I can do things that any 75 year old can do even though I am 42. It's tough when you lose part of your life. I too have to keep my depression in check because it can get out of hand like you mentioned.

I think it is awesome that you stepped up and shared your story. Most people are rude when it comes to dealing with disabled people. I guess its awkward talking to someone with a disability or they still envision who they once was.

admin

Wednesday 29th of January 2020

Wow! I had never heard of this before! Thank you so much for spreading awareness and telling your story. I appreciate you and I am hopeful they will fine a cure.

Lisa Favre

Wednesday 29th of January 2020

I had never heard of Retinitis Pigmentosa before but thank you so much for thoroughly sharing your story. The more information we have out there, the better - this way we can all properly educate ourselves on it!

bethelce

Wednesday 29th of January 2020

Thank you for raising awareness regarding Retinitis Pigmentosa. This post would help families and loved ones of the patient. Very helpful

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