In a recent phone conversation with new friends of mine, I was asked the question “What would you tell other pompe patients?”. The question mostly pertained to newly diagnosed patients but I think it also applies to all patients. Well here’s what I would tell them.
The first step to solving a problem is acknowledging the problem. In this case it’s Pompe. A patient must really learn to accept his diagnosis. There’s no sense running away from it. It’s not a problem we can run away from. The sooner we accept it, the sooner we can deal with it.
The next step would be education. Try and find out as much as you can about Pompe. Browse the web sites, seek help from professionals, talk to other patients and your family about it. The more you know about it, the better. There are things you can do to try and slow the progression until the time comes that you can receive ERT.
Now comes the time to channel your energies to the positive aspects of your life. Never under estimate the power of positive thinking. A positive attitude is key to having a better life.
Don’t let Pompe define your life. It’s not who you are. It’s just a part of your life. It doesn’t define your being.
Use this situation as a chance to do something great. There are lessons to be learned in dealing with Pompe. Use those lessons to help improve your life. Use it as a chance to bring your family and friends closer together. The biggest lesson Pompe taught me is to value the simple things in life. Often times, the simple things are the important ones. Such as spending time with family, appreciating the world around you, being thankful for what you have, etc..
Focus on the things that you have and not on the things that you’ve lost. There’s no sense in dwelling on the things you’ve lost. Aa the saying goes, “Don’t cry over spilt milk”.
Finally, whatever the end holds for us is not as important as the journey we took to get there. In the end I might lose to the fight against pompe, or I might win. I honestly can’t say until I reach the end. What I do know is that the journey is more importnant than the destination. As long as I gave it my all, lived my life to the fullest, I can’t lose. Others can do this as well.
So that’s my message. What do you think?