Retinitis Pigmentosa Support Group

i am taking a physcology course in college and a lot of things that we are learning right now has to do with our own self and our beliefs and effectiveness of a person so i was wondering, can we control RP or does RP control us? can you guys help me out?

i cant ask this in class because no one knows about my disability.

Hmmm, I think neither. What we can control is our reaction to RP and our mental state. We can't control the disease process, nor do we have to submit to some predetermined future because of our illness. That said, RP does change some rules, like driving. However, it doesn't keep you from devising some sort of workaround.

Would you let any other obstical in life control you? Can you truly control an obstical, rather than overcome it? It isnt RP that controls you, it is your attitude. You are not RP, you just happen to have it. You can't control it anymore than you can control life. Life is what happens in between making plans for everything else. Sometimes the path we set out on will change, but if we know where we want to go we will get there no matter how many detours it takes.

Post edited by: srs3278, at: 09/12/2010 11:34 AM

Excellent & interesting question. I think RP can absolutely control your life if you let it, and at some points, RP does bring me to my knees and I have to reverse the equation so that I'm back in control again. Ex. recently adopted the mobility cane - hardest decision I've ever had to make, in some sense I gained control but in other ways - I lose control over how people perceive me, whether they approach me (but did I have control over that in the first place anyway?)....aaahhh, this is a mind twister....

thankyou everyone for replying to this post. As you all know, I am very new to this and it still scares me. i am going to reply to everyone seperately.

to monochrome- I agree but sometimes taking risks and obstacles is a good thing because it lets you realize what you can and can not do. Sometimes, you have to realize the situations you take but I feel like RP is getting the best of me. If i'm home and not doing anything, thats all thats on my mind but then when im out and about, its never on my mind. its hard for me to really adapt to this life style. i cry every night.

to SRS- even if you dont want to control it, it still gets to you. like i try to live my life to the fullest. I go to college, i work as a babysitter right now. i have my own babysitting company and im doing very well. no one knows about the condition. and i plan to keep it that way for very long periods of times.

to westcoach- i totally understand your situation with the cane. I got a cane and training just in case anything was to happen in the near future. I wanted to be prepared so I did the training far away from my home or area when no one i knew could see. The cane is in my last draw of my dresser under all my clothes when I can not see it. It is in hiding. I never use but its there but i forget all the time and everytime i see it, i start crying so that stays hidden for all the time. it will never come out.

I still need more advice though. I can't live my life crying every night or every time I am in a situation. I need friends that understand to tell me everything will be ok or just give advice. I tend to stay in doors alot now and i tend to stay on my own sometimes. i need to be reassured.

Well, let me be the first. Everything will be OK. Specifically, it will be as OK as you make it, or as you allow it. It may be different. It may not be what you saw for yourself ten years ago, but it will be OK.

Risks and challenges are part of life, with or without RP or any other physical challenge. I stopped skiing when I skied through a "trail closed" rope. I stopped mountain biking when I broke two ribs. Thankfully my decision to stop driving didn't follow an accident, but most decisions to restrict my life come after having pushed the boundary a little to far.

However, I still hike as long as I can choose the route and partners. Instead of a variety of outdoor exercise, I go to a gym with trainer-led classes that challenge me in a safer environment. So, despite having given up on many activities, I'm fitter than I have been in years. Is my life different? Yes. Is RP in control? Well, it affects certain decisions, but overall I'm deciding what I want to do, and I'm doing it.

Realizing that you can't live your life by crying every night is a big step. You do need to mourn your loss, just like any other, but then you need to find a way to move on. Many cultures follow a funeral with a serious party for just this reason. You need to mourn, but then you need to move on. Hopefully this forum can help you with both.

Nicole,

We all have down times. We can't let any illness/syndrome/disease completely control our lives. Yet, we are somewhat controlled by things like this. I don't drive because of RP. I avoid going out at night, but do so if I must. I trip over things that other people see and avoid.

On the other hand, RP doesn't control every aspect of our lives.

You are correct in saying that you can't cry every night or never leave the house, that would be letting RP completely control your life.

You should feel comfortable asking about this in your class. No one would have to know that you meant yourself. I would suggest asking about disabilities controlling lives or people controlling their disabilities. It would probably be an interesting topic for your class.

Hi Nicole- sorry I couldn't dive in on this one earlier. There are a lot of topics here that deal with this question, either directly or indirectly. An early one regarding how men deal with it was interesting, as guys typically define themselves by WHAT they do, rather than a more esoteric WHO they are. Also, I started a discussion sort-of titled How you define yourself... I was wondering the same thing. Do we define ourselves by RP, or does it fall into place within our world? Personally: I used to define myself as a person with RP- it became my identity. Somebody in my way? RP. Slammed into the coffee table? RP. Lost my job, license, and direction in life? Yep- RP. It quickly permeated every facet of my life, so I adapted to it, not the other way around. It was when I accepted it for what it was- limited vision, and I "regained control of my own life", the dynamic shifted. I made decisions for my life- career choices, hire a driver when needed, wore funny lighted hats, etc., that I regained what I felt I succumed to, and slipped away from what I perceived as a "victim" role. Don't get me wrong- I still delve into the victim/poor blind guy/ no independence mode, BUT I can make choices to adapt and overcome.

Lost my license? Whatever; it's gone. So are the license renewal fees, car payment, excise tax, gas bill, insurance bill, no room in the driveway. But I have to pay the stepson's girlfriend to cart my ass around when needed. Choices. Acceptance. Now in a seminar I can raise my hand and ask questions like: "I have no peripheral vision, and I notice that I'm sometimes missing clues and cues from..." A person from the course approached me and commented on how brave I was to be able to be so open. Am I brave, or taking care of myself and my needs? Brave or honest? Brave or unashamed?

Great topic!

Wigz

to monochrome, lazy and wigz, thank you for all the advice. i really appreciate it. i have lost so many friends in my life because of this but i need some friends in my area that i could trust or help me overcome this. i just need the respect i need. i can't accept it ever because it hurts knowing., i know i have to accept this one day but it wont be now because it isnt right. when it feels right or secure, then i will but not right now. you know? so what do i do? i need advice, i need friends.. can anyone help?

Nicole, You are welcome for the reply. You say that you are looking for friends and this group is full of people wanting to be your friend and help you through this. We all face the same thing and we have all been scared. We have all had to accept the facts of RP. For some people, it may be easier than for others. If you ever want to private message me, please feel free to do so. I am here to listen.