I spent a lot of time this past week writing an email (well, more accurately a series of emails) to a close friend of our family to provide an extremely-detailed update on the last year of our lives. I stressed to her that it was important for me to do so, as best as I could, because not only did she take the time to ask some specific questions- ones that are shared by other close friends of my husband and our family- but she was always by our side on this journey from the very beginning.
She's also been in my husband's life since college, knowing him almost twice as long as I have, and I know very well that she and others put up with many of his shenanigans around DePaul's campus and many bars in Lincoln Park.
As I told her, I've given a lot about how I am clearly not the only one who has been greatly impacted by my husband's chronic illness and the diagnosis of FTD. Our family, our friends, our colleagues, and so many others who have been supportive through messages, prayers, generous gifts and donations, friendship, and simply just letting us know "I'm thinking of you."
I've read every single email and message, sharing them with my husband and at times, my daughter, and embraced all of the stories and memories of how he impacted so many people during his life, with many sharing that he always stood out in a room and was the person you admired and wished to be like. He was always adventurous, imaginative, intelligent, friendly, confident and charismatic. I've been told he was "the guy you looked up to" and "the guy you want to be like”, and I know he was ”life of the party” and a leader in his group of friends.
For all of you who have known my husband, and have had him impact your life in any sort of a way, I want you to know that you are the reason that I decided to share more of our story.
I apologize if you've felt like there has been a lack of updates over the past few years, especially after sharing the long-sought-after diagnosis and receiving the generous financial support of so many of you who also supported us in so many others ways. It was never intentional, deceitful or malicious in any way. To explain it best, we were trying to figure it all out for ourselves as it was a disease that we were both unfamiliar with and also not expecting to be told it as "the answer" that we had been searching for all this time.
While I can still vaguely remember the moment and feeling some sort of validation from the medical community after seeing his struggles being dismissed so many times before, I also don't know if I truly understood what it meant to finally have a diagnosis, let alone one being called "Behavioral-variant Frontotemporal Degeneration."
To explain it as best as I can, we've struggled more than anyone may ever know. On top of the diagnosis and a global pandemic, we were left feeling isolated from everyone, including local friends and family who were no longer able to distract us with playdates and conversation over meals and drink. While Facetime and Zoom meetings worked for most of the world to create connections, we learned quickly that it was not conducive for my husband's slow-processing and easily overstimulated brain, as he became more confused and fatigued than the his other friends who greatly benefited from the interaction with each other.
We also felt very abandoned by the medical community who was now fully focused on fighting Covid 19 instead of degenerative diseases. And while we could remain bitter, I think it's better to focus on how everyone has been individually impacted by the pandemic, in ways that others may never understand.
But it's been over two years since his diagnosis of FTD, but let me remind you that this has been a much longer process for us. For nearly eight years now, my husband has been suffering with increasing symptoms that impact his cognitive, movement, and speech, as well as causing vast changes in his personality and behavior.
To tell you the absolute truth, it is horrible to watch him suffer, but I’ve tried my very best to remain supportive and maintain a comfortable environment for him and our family.
Again, I apologize if anyone has felt left out and in need of an update since his health issues and diagnosis of FTD was shared within our community. While I have always responded to anyone who has ever reached out to us with questions or expressing their support, I'll explain that many specific details remained private (and will continue to be) out of respect to my husband, who has not only suffered the most, but has also unfortunately been able to retain some sort of awareness as the victim of this horrible disease.
All of this is truly for him, as I hope I can help others understand that this is a disease that takes full control over a person, one as incredible as my husband. While I hope that I am able to raise more awareness for FTD, I also want anyone who reads this to better understand the strength and courage that my husband endured to fight through this disease and all of the pain, confusion, and hardships that it has created.
He has told me that he fights for "his girls", and I believe him.
But I also believe that through his suffering, he is going to help so many others who are faced with FTD or other similar diseases, and that is why I want to share our story.