One of the most challenging parts of Retinitis Pigmentosa for me as we journey down this trail is the changes that are occurring. Things that I could see a year ago, or even 6 months ago are getting more and more challenging. I’m noticing things that are happening that would have never happened before. Things that I could once do with ease, aren’t even possible now.

Is it going to stop?

Through these past few months, I have been up, down, all around and back again in terms of accepting this reality and the hard truth that there is only one constistency right now and that is, my vision will never get better, it will either stay the same or continue to decrease. It’s a grim reality and it’s been the hardest thing to deal with for me. How do I plan my future? How do I survive and be a good husband, father and son? If you know the answer, please share…

Adjusting my life and how I live it seems to be all I do anymore. Whether it’s leaving more light son in the house at night or having to debate if going out at night will even be enjoyable anymore. It’s a constant adjustment and learning curve as my vision worsens and my reality of not seeing much increases. With each day comes a new challenge, frustration and lesson, and to be completely honest, it’s absolutely exhausting.

This disease has it’s days where it owns you and the days where you own it. Today it owns me and I am further reminded of my diagnosis, my reality, my future and the challenges on this road. I am not searching for pity, I’m simply being honest and if you feel the same as me, feel free to comment below.