february 2019 update
Written by:

Colleen & Family

February 15, 2019

Hello Friends and Family,

I am forever thankful for all that you have done and continue to do for me. The cross I have had to carry has crushed me at times, and it is important to know that you have helped to lessen that load. I try to avoid focusing on the past physical and psychological suffering because it is difficult and unfortunately, I am still not well.

Although hesitant, I made the decision to be open about my spinal fluid leak because I had to raise awareness. I will not accept the possibility that this can not be solved and that I have to put my own feelings aside for my children, my family and the thousands of people who suffer silently without progress or solutions. Knowing first hand how this impacted every aspect of my life and my family’s life, I can not be silent.

Last Jan/Feb, we thought it may be the beginning of the end to my life. I felt that I could no longer go on and despite my deep love for my children, I had no fight left in me and no will to survive. I laid flat in bed for days and my bed became my prison. I would watch hours, days, seasons pass and overhear my children asking what happened to me.

Last year began with me taking an emergency flight home from Florida after taking a long drive down to give our kids a break, a vacation, and a sense of joy. Within 2 days of arrival, I developed a blood infection and had to make the difficult decision to leave them all behind and get on the first flight home for medical help. After I got back to Chicago, I was admitted to the hospital and was so ill that I was having hallucinations for days. I remember very little but I remember seeing lots of doctors, hearing them call code, shaking on the bed and later realizing that I missed my son’s birthday for the 3rd time. I left the hospital on methadone and spent weeks in bed. It was almost one full year ago that I stood up, began to cut my meds, and began hoping that I would get better.

Today I am better, but I am still in pain. I still can not care for my kids alone and I still can not work. I am far from living my “normal” life, but I am better because I am not confined to bed 24 hours a day and feel somewhat freed from that aspect of this condition.

My doctor at Duke believes that the spinal from my c-section punctured thru my entire dura and created a hole in my dura that covers the front of my spinal cord. Many experts believe I am dealing with the aftermath of what happened to me and subsequently, that I am suffering from rebound high pressure. My body was trying to compensate for losing brain fluid all of those years and now that I am not leaking my brain continues to make too much spinal fluid. This overcompensation causes fatigue, intense neck pain and other neurological symptoms.

For reasons unknown, this has gotten worse not better over time. There is no cure for this illness, only medications, but in order to fully heal the brain needs to self regulate on its own. I have come to learn that there are never answers to my questions. No one can tell me how long it will last, if it will cause another leak or if I will ever be able to wake up get dressed and live a normal life without these disabling symptoms.

What I do know is that because of my suffering, I have learned so much about people. People have amazed me in so many ways. There was incredible support from our friends and family who spent months organizing a huge event for us so that we could raise money to have the care that our children require and deserve. I have learned the strength of my family, our friends, and the community. They not only helped me, but dared to see the bigger picture--realizing that I suffered from a condition for which no research exists.

Without research, I may never fully recover and that I am one of many. Life is not always what you hope. Dreams can be crushed, hearts broken, but in the depths of that hell, there is hope in people who come together to help others. I never thought I would be on this side of that story.

I am so thankful for all of you who have chosen to shine the light on a devastating disease and sticking with me and my family and the Tyrrell Foundation. The Tyrrell Foundation has not only become a reality but it has already shown its strength--helping to fund the 2nd ever CSF Leak Symposium in CA last October, allowing experts from across the globe to meet to begin to address this disease. We have also been blessed with some amazing angel donors, with the support of the DuPage Foundation, to contribute to three research grants. We are just getting started.

With Gratitude,
Colleen and Family