After being in denial about it I hit the guilt stage. Now because I have cystic fibrosis I don’t think I will ever get over the guilt I feel. Looking at the parents of these girls I can’t help but feel guilt. Guilt that I’m still alive while their daughters were taken from them. Then came the anger stage. This stage still comes and goes in my life. The depression stage lasted a few months. Every time I felt some sort of joy the guilt would kick in that I was still here while Lisa and Jessica were not. The guilt would then put me into depression mode. It wasn’t till about 8 months later that I could fully accept that they were gone. I accepted that I could never have them back and I accepted that I would have to continue on this CF journey alone. BUT for some reason I kept going back to anger. To this day I’m still so mad. I know there’s nothing I could have done to bring them back but I couldn’t remain silent about this loss that I had. There is this empty space that will never be the same. This made me angry. I was so mad at the fact that nothing more could be done. I was mad I didn’t get the proper goodbye I would want. My mother helped me realize that I could say goodbye 104 times to these girls and it still wouldn’t be enough. Like I said before I still feel guilt. The anger is still there as well. So I decided to take my anger and use it to my advantage.
Channeling anger to make change happen
I wanted to use the anger I had and make a change. Not just for me and not just for CF patients everywhere. But for Jessica and Lisa. So I slowly started to raise my voice. I spoke publicly about CF and what it does to a person not just physically but emotionally. I was tired of people asking “WHAT IS CF” the more I heard these words the angrier it made me. So I would go on to speak more about not just CF but patient care. Some people don’t know that happiness and being healthy go hand in hand. If you have a strong attitude and a positive mindset you will see a difference in your health. Maybe not today or tomorrow or 5 weeks from now. But I know firsthand that the happier you are the more you tell your mind “I can do this” or “its ok my body is working as hard as it can” you will see a change.
For some reason my anger motivates me. My anger encourages me to speak up not just about cystic fibrosis but about all patients dealing with any illness. The reason I even got involved in patient advocacy was not for me. It is for Jessica and Lisa. It is for all CF patients. It is for all patients with any illness. It’s to recognize that every patient has a voice and a story. Not every patient will speak up. I didn’t speak up for the longest time. I thought no one would listen. The day Jessica died and 8 days later when Lisa died that was when my anger had to be dealt with. Anger towards their death. Anger towards my health. Anger towards every patient fighting every day just to have a life. I needed to do something. I could no longer sit back and watch people fall through the cracks. I took my voice and my struggle with my anger it flipped it. I flipped it to use it to my advantage.
I am at a point in life where I no longer want to watch the clock for the day I pass. I want to change the way patients and their families deal with their care. Depression is an invisible illness that more than 50% of people with an illness deal with. Some may see this as weakness. At age 14 I was diagnosed with depression. My body now depends of anti-depressants. I’m not happy about it. But it’s just another struggle that I will continue to fight with. Once again the anger towards all this motivates me. Rather than sit around being mad at the world I want to educate the world. I want to educate families, patients, doctors, nurses and anyone else dealing with health care. In a way losing my 2 friends made me a stronger person. Some days I break down. I lose sight of why I do what I do. I have to remind myself to take the anger and guilt and move forward be stronger louder more courageous than the Cystic Fibrosis. I will always have bad days. I will always have good days.
The bottom line is I write these posts and give these speeches to avoid anyone EVER being in my position. I know there will another like me someday but I want to avoid them going through the guilt and anger. I want to see patients happy even though they have an illness. Everyone deserves happiness. Especially when you are battling for your life every day.
This is dedicated to Jessica Forsyth & Lisa Lawrenson. CF warriors.