#nohairdontcare - Matteo's Stories

First off, it seems only fitting to continue the use of Kelly's Hashtag given my own hair loss :)  but more importantly, I will continue to use it for my own personal post.  That way you know what you are getting into before you start reading.

Thinking about these last two months on my drive home from NYC last night, I knew I was ready to start my first blog post.  Blogging was something that was very therapeutic to Kelly and I am hoping that it might have the same effect on me.  I also know it was something that helped others as much as it helped Kelly.  You can only convey so much with words about how you are feeling, what you are experiencing, but there is a sense of strength that comes with the vulnerability of putting oneself out there in the digital world, to be read and judged.  If Kelly could do it, with all she was going through, then I can muster the strength to do it also.

I hope to cover all things past, present and future in these post.  Sharing moments of my past with Kelly, where I am now, personally and with Ginger Strong, along with ideas and hopes for the future.  I also want to tell you, if you have your own story or idea you would like to share on our Ginger Strong page or with us privately, email me at Matt@GingerStrong.com

So the last two months…

As most of you know, Kelly passed away on January 2nd from neuroendocrine carcinoma of the pancreas.  Her disease was aggressive when she was diagnosed on September 13th, 2013 at 26, but through treatment at Memorial Sloan Kettering, she got better quickly and it was easy to live the day to day without thinking about cancer at every step.  In a way we lived as any couple strives to do, we shared stories about inconsequential things that either made us happy, sad, or angry during our work day.  We planned dates, dinners with friends, vacations, family time.  We talked about our future, where we would live, when we would get married, when we would have kids.  We had to plan meetings with a specialist to make sure Kelly’s eggs looked healthy and there weren’t any complications from chemotherapy, but we had back up plans, from surrogacy to adoption, and while the umbrella of cancer was always there, in a way we felt like we were winning, moving forward.

Amongst all these days of normalcy, there were still difficulties, the constant reminders that things would not be ok at some point, a lingering inevitability. Most nights I was there for Kelly, for her to cry for 30 minutes or an hour or longer before we went to sleep. On other nights skype was our solution. I would read to her until she fell asleep or had pulled herself through the depression, anxiety, fear and sadness that comes with knowing your life will be taken from you soon by something outside of your control.  Those feelings are so powerful, so difficult to fight every minute with a strong face, they have to win at times and when they do, it is heart breaking to see, to bear witness too.  But there was something about being with Kelly in those moments of total vulnerability that creates a bond I never imagined I would experience.  To have someone open themselves in that way, to trust you with everything, it’s the most amazing thing you can ever receive and give yourself.  I can tell you without hesitation that it changed me in so many ways and I believe has made me a better man.  I will never be able to thank Kelly enough for that, but love is just that, not having to say thanks, just knowing you both do it because you want to, you know what it means to each other without ever having to open your mouth.

So I gave it all to Kelly and while it hurts beyond words to have lost that, there is a comfort in having experienced it, in not going a lifetime without it. 

I started this post with a picture of Kelly many of you are familiar with, it’s a picture I always see and feel that shares who she was in so many ways, without actually explaining any of them.  It’s a reflection of the parts of her life that were beautiful, the parts she so bravely shared with the world.  But this photo doesn’t show it all.  

Behind that big welcoming loving smile was a disease that was beyond difficult for Kelly to manage.  When I met a young gentlemen at cycle for survival this past month in San Francisco, I immediately recognized his similarities to Kelly.  He had enthusiasm in his words, love for all he had been given, but I could see the weight he carried in a way I wouldn’t have had been able to before.  I could see what the tough moments had done to him and what strength he was drawing on to live in that moment, to enjoy it all, to not let the thoughts that can come with being terminally ill take over.  He was winning, in a way, much like Kelly did, but I could feel his desperation, the reality that while it was such an inspiring experience for him, it was one that was ending and most likely will not unfold again. 

How do you balance this fear of the inevitable while trying to live in the moment?  So many of us can do it easily because death seems so distance, but for those like Kelly, death is there pushing you to give up, to call it quits early, and when you can’t fight it on the physical front, the mental fight is all you have.  Death is a physical thing though and so you can only win the mental battle until the physical one is over.

So these last two months have been filled with reflecting on so much of this, all while trying to live in the moment.  From taking in the funeral services provided for Kelly, the people she inspired and loved outside of myself who showed up to say goodbye and to grieve, to participating exhaustively in Cycle for Survival for a month, a truly empowering organization, too seeing how many people have come to my side, to support me.  It is this support that I think gives us all hope, that teaches us to remember more often we aren’t the only ones fighting and battling the downs that life throws at us.  I often get asked how I handle it all, how I get up and try to continue to do more good than bad.  It’s everyone that has been at my side in all different ways who make this possible, when I know they have their own battles to fight.

And so I very much feel like I am moving on to another chapter now.  One where I can grieve in some sort of independence for the next few months.  I will then be riding my bike across the country with two great friends this summer, and this experience comes with excitement and nervousness, like so many things we choose to try and tackle in the future.  I worry about what’s a head, will I find the comfort, the oneness I had with Kelly ever again?  Will I ever really want to give that to someone again knowing what the end of it feels like? I look at my newly born niece and see all that is right and lovely in life, all the beauty that can come from it.  Can this still be my course one day?  Can I bring another Kelly into people’s lives? 

Minimally I hope that I continue to expand on Ginger Strong and our plans to make our brewery a reality, to honor Kelly for all she did for me and continues to do.  To honor all those who have supported Kelly and I in the fight against cancer.  To support others as they have supported me. 

I still cry everyday, but with everything that we all face in life, and how unfortunate it can be for some, how difficult and cruel, well beyond what Kelly faced, I know it's ok to be sad as it reminds me of how lucky I was.

Miss you Muppet

Matteo Seconi

Chief Ginger Lover

YOU DRINK WE DONATE

Email: Matt@gingerstrong.com