The following is a bit of my story…
“We all have a story to tell, and a perspective from which our experiences determine who we are”. Kelsey Maffei
Starting from my childhood, I attended a small private school (about 200 kids) and the expectations in this school were higher than most. I got mostly good grades and excelled in spelling and writing. I did well in math, until about Algebra II, as I had trouble with the conceptual theories and the addition of letters in math (what is the purpose of that anyway?). I graduated high school with a 3.14 GPA and went on to college. I went on to graduate from college with a bachelor’s in psychology and a minor in business administration. In a human sexuality course in college, I learned about sex chromosome variations and briefly about Klinefelter Syndrome. I suspected similarities in myself, but brushed it off and thought that was something that only happens to other people.
Socially, as a child and into my adult years, I have always struggled with self-confidence and interacting with groups of people. I do pretty well with one or two people in conversation, but more than that I have anxiety and resort to being the observer rather than interacting. At 40 years old, at the time of this writing, I am becoming more comfortable with the idea of that observer role as opposed to thinking I need to be more extroverted, but for many years I used alcohol to try and be what I thought I wanted to be social. Needless to say, that never really helped me achieve the goal of being more comfortable in groups.
Path of Optimism
As a new day dawns fresh air abounds
Taking a deep breath I stroll the grounds
With no one around I relish the tranquility
Of the freedom the silence and the security
My buddies join me to keep me company
As I contemplate the future of our family
Not a traditional composition to be
Rather a mixture of hope and complexity
Such is life as I have only to accept
Knowing that I’m given the strength to adapt
And handle all that comes my way at one time
– Kelsey Maffei 2008
My wife, Tanya, and I met our senior year of high school and we have been together ever since. We got married at 23 and started trying to have children a couple of years later. After a year of no luck, we decided to seek a medical explanation and I had a test at the local hospital to see what my sperm count was. It came back with zero and was confirmed with a 2nd test of the same. That led to seeing the urologist, who did a karyotype and confirmed the non-mosaic, 47 xxy diagnosis. I was 27 at the time, and I was devastated. I couldn’t even look myself in the mirror for months. I resorted to drinking and sank deep within myself for several years. I finally quit drinking altogether almost 5 years ago. Now I use exercise and running to manage my anxiety and emotions in a healthier way.
Tanya and I realized our priority was to have a family and we weighed our options. We chose to use donor sperm and IUI, and we were lucky to have 2 beautiful and amazing children with this process. It was challenging for me to accept the use of donor sperm, as “I felt like I was choosing my own replacement. And I was worried that I would not have a loving connection with my kids, but that worry evaporated as soon as I held my kids for the first time; I have not worried about it since.” Kelsey Maffei, I will always be their father, whether I contributed to their existence biologically or not.
I did not begin TRT until about 4 years ago. When I was diagnosed, my T level was at the bottom end of the normal range (about 220), and the doctor didn’t think it was necessary. It wasn’t until about the winter of 2015 that I started to feel most of the classic symptoms of low T. I then asked my doctor for a test and it was less than 100, so I started weekly self-injections of testosterone. Life has been much different for me since then. While I understand that TRT is not for everyone, I feel like it has been a positive influence in the stability of my moods, my ability to have any muscle mass, to manage weight gain, and to now be able to grow a beard. I see that my self-confidence has improved, and I am better able to focus on things I decide to pursue.
For the first 10 years after diagnosis, I kept it a secret, except with immediate family and a few close friends. That was challenging on many levels as I felt I was living a double life, hoping with all my will that the 2 would not collide and people would not see who I really was. Thankfully, for the past 3 years, I’ve grown to the level of acceptance which allows me to be open with the world about who I really am, diagnosis, and all. “I feel like by sharing my story of living with XXY, I have the ability to shape people’s perceptions of who I am before they have a chance to determine their own conclusions based on what they read online about Klinefelter syndrome.” Kelsey Maffei
Overall, we live a comfortable life, that is not without its’ challenges, but we try to focus on the positives and not let the diagnosis dictate how we should live our life.
-Kelsey Maffei 2015