To food PEG or not to food PEG that has been my question for a few months now. You know I'm a teacher so let me define food PEG for you because building your vocabulary is so vital to learning. "A percutaneous endoscopic gastrostomy (PEG) is a procedure for placing a feeding tube directly into the stomach through a small incision in the abdominal wall with the assistance of an instrument known as an endoscope. The procedure is performed as a means of providing nutrition to patients who cannot take food by mouth. Many stroke patients, for example, have poor control over their swallowing muscles and are unable to safely consume enough food, or they have muscle weakness that allows food to leak into the lungs when they swallow things by mouth. Many of these patients will benefit from a PEG tube in order to receive adequate nutrition and to prevent them from respiratory problems that develop when food or fluids accidentally gets into the lungs." In my case, the weakening of my neck muscles, diaphragm, and lungs are increasing my chances die from my disease. So getting the PEG now is like training for a marathon. I'm putting in some miles preparing for the long haul.
It was a tough decision for me. When I first began this journey of deterioration, I was certain that letting go and moving on to my next chapter was the best course of action for my family and me. My dependence and my pride were ushering me out of this world and into the next frontier. Then I happened upon a woman who has been fighting to live for 30 years with ALS. My pulmonary doctor had mentioned her several times. Since I was coming to a crossroads, I decided to contact her. To my surprise, she responded quickly. If you have time I want you to watch her story.
What Erin taught me was that at this point in time is that living with ALS is going to be an adaptation mixed with dependence on loved ones and machines. You see Erin has a beautiful, vibrant mind trapped in a motionless body. She is a pioneer of this frontier of living not dying with ALS. She has created outlets for us to continue to reach out and touch others through technology. When I first watched O.J. Brigance and Steve Gleason living with ALS through technology, my pride said not me. First of all, it's too expensive and I've put enough on my family as it is with just my basic needs. How could I ask them to take on more doctor bills, new routines, and new equipment? Am I worth all of this? The answer from Erin, my loved ones, and my community has been a resounding yes. As long as I can continue to be happy and fruitful in my life, I have faith and hope that God will provide a way for me to be an instrument for his message: God is love. So this past weekend, the food PEG was inserted and I'm recovering as I type. I'm on the mend and want you to realize your blessings, embrace your life, and seek to love and serve others regardless of your physical condition or station in life. Where there is darkness, you can bring light just as Erin did for me. I'm going to fight and as Steve Gleason says, "No White Flags." We all have a purpose and I'm embracing mine now as I type.