Dealing with Usher Syndrome or any other disability is like dealing with death. You have the seven stages of Grief to deal with.
1. Shock and denial
2.Pain and Guilt
3.Anger and Bargaining
4.Depression, Reflection, and Lonliness
5. The Upward Turn
6. Reconstruction and working through
7.Acceptance and Hope
Granted, I haven't gone through all of these and not necessarily in this order. But I have experienced some of these. I have come to the point of understanding that I will most likely go blind. I don't think my family has come to that realization yet, but I expect they will go through some of these steps as well, especially my daughters. All I can do is let them express themselves and love them with all of my heart. I will always be there for them.
So I finally have gotten to the point of acceptance. I accept my fate, I accept my blindness and I accept that there is no cure. So I went and got a tattoo to honor my acceptance. If you don't know me, I love all things Celtic. So I got a triskele with a shamrock in its center to symbolize my good luck because I have it in spades where my family is concerned. I love my tattoo!
I am so proud of you Trista... Keeping a possitive outlook is definatly the hardest thing to do some days.
ReplyDeleteAs for your comment about how you are dealing with your disease... WOW!!! did that ever hit home for me personally! Yes, I have accepted my fate, but there are days still (after 12 years) that I feel so guilty. And rude comments from people, can still hurt. You are right, people, including family members really don't quite grasp the whole concept of what diseases can do to a person. Sure they can see it, sort of.. but they really need to experience it to totally understand. Although I'd never wish that on anyone.
I really enjoy reading your post. It makes me feel less alone... even if our diseases are completely different... Both effect our lives in ways that are hard for others to imagine.
Ha.. like Mother in law, like daughter in law!
Keep up the awesome attitude Trista! If you ever need to talk, Please know I will always be here for you! And yes, I do understand!