I sent this letter off back in August of 2007. I’ve been inspired by the recent phone calls and posts that have come in with stories all too similar to mine. Because of these stories, I’m going to begin to fill in the gaps of my stroke story and timeine with the purpose of helping others paint a clear picture of what still needs to be done to improve awareness with cryptogenic stroke. That begins with a personal letter I had filed away that I had sent off to Tedy and Heidi Bruschi after reading the book “Never Give Up”. I was reminded of the letter after hearing in the news yesterday that Tedy has renewed his contract with the New England Patriots-which by the way, is great news for New England. I hope he also finds time to renew his efforts with spreading the word about fighting stroke. Anyway, here’s what I am referring to:
Originally written 6 August 2007
Dear Tedy and Heidi;
I just finished reading Never Give Up and I felt compelled to send a note off to you both. I clearly admit I was one of those doubters you referred to in your book. Having three small children of my own, I could not even consider why you would risk returning to play football in the NFL. I know now how blind I was to what you and Heidi had gone through. Unfortunately, I learned first hand this life lesson and then later it was reinforced by reading your book.
You see, in the Fall of 2006, I had a stroke at age 39 from the same cause, a PFO that was never detected at birth. I feel like I am just now on the same journey back home as I write this note. In many ways, even though I had my PFO closed on May 1, 2007 and have worked through most of the physical limitations from the stroke, I am still going through much of the emotional recovery you described so well.
I admit I was angry with you for quite some time Tedy. I know, you’re thinking you don’t even know me, so it is unfair for me to make that statement. When doctors finally found out what had caused my stroke, I was reaching out for help to find answers. No one could help me sort through what decision my wife and I needed to make to get me healthy again. The real reason I said I was angry with you was that I was so desperate to speak with someone who had come out on the other side after the PFO procedure and returned to their regular life and you were the only “young face” of stroke I knew of. I sent emails to you through the Pats website, left messages by phone at Gillette Stadium all to no replies. I am no longer angry after reading your story, and realize your position and the energy it took to recover. It was not even that I expected a personal reply, it was more that I was thinking here is a guy that the world knows and loves and he is being silent about this at a time when he could be making an enormous impact in stroke awareness. I could not have been more wrong. My sincere apologies.
Part of my educational journey to get some answers led me to meeting Zach Blackburn through the ASA American Stroke Association) and your organization. I am so glad I went up to Framingham to meet him personally. I shared both my enthusiasm and frustration with him during our meeting. At the time I was still awaiting a decision before the PFO committee at MGH and I was in a mental state where I needed to put things back “in my own hands”. I spelled out my frustration with Zack about not having enough resources for young stroke survivors and the lack of education/knowledge for PFO’s and especially that related to the brain/heart connection. I wanted to make some changes and I brought up a copy of my own story (which I had written out of frustration) to him. He probably feels I was all hype at my convictions to get national attention for this component of needed stroke education, but I promise to you I am only more dedicated to this cause now, after closure, than at the time of that meeting back in March. (I’ve included a copy of my story if you would like to learn more.) I am sure Zack dismissed my enthusiasm and placed this article on his desk, but I plan to speak to him more on this topic at our next Tedy’s Team event this weekend.
As you’ll learn if you skip through the PFO background information, and go to what I call my “Oprah moment” – this is where our stories go off course and it is this part of my story that I need to see to a better end for future stroke survivors.
I could relate to the trips back and forth to MGH, all the testing, even getting mad at the doctors up there at times (I had more then one angry moment with Dr. Palacios), and I even was laughing at the description of your stomach from the heparin injections post-op because my midsection looked just the same. While there were so many similarities to my own situation and I owed the same “thank you’s” to many of the same doctors and support staff at MGH after my procedure, I also experienced a much different approach to getting to the decision to close my PFO. If you read my story, you’ll learn more, but the short of it is so much more attention to this topic is needed. I know you must realize you both are in a position to impact so many lives in a positive way and that is why I hope you are planning now for your own “Oprah moment” to take your important message nationally.
My biased judgment of your book is that there will undoubtedly need to be a “part 2” because it is that good. I expect you’ll be flooded with stories like my own and would need to follow-up with the impact your book will present. I believe, as does most every person in New England, you both have a powerful message to get out there and perhaps the book is just the beginning.
In closing, after meeting several of Tedy’s Team members for the first time last week in Marlboro, it is clear I am on the right team to help you both get this job done. I also had the opportunity to be introduced to a real genuine stroke hero when I met you, Heidi, briefly that evening. I know that I would not be standing today without the support of my own hero, my wife Lisa. Tedy, you describe there are two faces of stroke, young and old. I think there is also a third face and it is the face of the real stroke heroes, the person(s) you lean on for support when you are going through this process-the caregivers and loved ones who step up and keep you strong. Quite honestly, I was feeling a bit overwhelmed last week when I thought of the tasks that lie ahead. I was getting puzzled by how to create the “Oprah moment” this stroke education campaign needs in the media to raise awareness. Your book, along with a reminder from my stroke hero Lisa, came at just the right time and has me back on track focused on what needs to be accomplished.
Please let me know if there is anything I can do to help you both get to that “Oprah moment”. In the meantime please keep quarterbacking this cause and I’ll continue to do my part on your team.
Best of health,
David Dansereau (401) 632-0868
PS- My coming back song has been “Give a Little Bit”, I prefer the remake by the Goo Goo Dolls. Load it up some time and listen to the lyrics.