A Real Community

Since our initial diagnosis in September, Rachel and I have been thrown into the world of pediatric cancer and more specifically DIPG. Since DIPG is so rare, it has developed a close-knit community driven by advocates and parents (both current fighters and former warriors.) Since the words are first spoken that your child has terminal cancer you become lost and frantic to find out as much information as you can. You reach out to parents who are fighting or have fought this disease through Facebook and email. Some of them reply to you and help you process what you’re going through, some of them don’t. The people who help guide you through those first few awful weeks are some of the best people I have encountered and almost all of them I have never met in person. It’s a community where you are both the patient and therapist, the recipient of kindness and giver of support. You switch roles fluidly from scared parent looking for advice, to wise battle-hardened veteran talking with other scared parents on a daily basis. It’s a fantastic community of people who you both love for being there for you and regret meeting because it means a big part of your life is now pain and sorrow. There names have become so familiar that my wife and I refer to them as if they are friends we have known all our lives; Jo, Brittany, Lisa, Trey, Jodi, Lisa, Ken, Jessica, Sydney. You also start conversing about the other DIPG kids like they are nieces and nephews; Ava, Joshua, Peyton, Zamora, Emilie, Mackenzie, Parker, Kaylee, Kiera. They are only a few examples of the people whom I know (but mostly have never met) but I think they get the point across. These people become a part of your life and something so familiar and ingrained in your day-to-day that you only need to mention them by first name.

Someone posted a picture on Facebook that read “DIPG turns friends into strangers and strangers into friends” and it was that post that got me thinking about what I was going to write about next. This picture isn’t meant to be an indictment on your friends not doing enough for you (because most of them are) but it’s meant to describe an unavoidable chasm you start to feel with the people who used to be closest to you and the closeness you start to feel for complete strangers that are sharing a similar experience. You still have the same love and appreciation for all of the family and friends in your life that are doing so much to help you deal with this awful situation. But what starts to grow is a painful and constant reminder that they get a break from this cancer and can return to a normal life with their own children, they get to take a day off from this pain. It’s an unavoidable side effect to what you are going through and you both hate yourself for feeling it and know that it’s something that you can’t control. It seems to be a part of human nature that you want to gravitate towards others that are sharing a similar experience and can understand the levels of pain you are going through. This feeling that you cannot seem to get away from is just one of many unexpected things that have grown out of this experience. This list includes, but is not limited too;

  • Being terrified of people who don’t know about Abby asking me how my children are doing and how I am going to react
  • My ability to shut down and avoid doing things for no discernible reason
  • My moods swinging in social situations with family and friends.
  • Not being able to listen to music for the first two months post diagnosis and still not being able to listen to certain songs without breaking down.
  • Being scared of having to explain why I am missing so many days at work to a new co-worker.

You notice all of this stuff and try to work on it. But you always wonder if these feelings and new anxieties will ever truly go away.

There is this dream I have been having that I can’t seem to shake and always seems to pop up when I haven’t been writing or during times of stress or heartache. The whole family is on a train car on our way to an unknown destination that is never reached. We stop occasionally to get out and walk around for a while at no recognizable landmark or discernible location, only to return to the same train, in the same car, in the same seats. We see other families come in and sit down across the aisle and they stay with us for undetermined periods of time, but they all eventually get off at a stop and don’t return. Family and friends visit, but never sit down and only briefly stay to chat before getting off at the next stop. The car is old-fashioned and dimly lit. I’ve had this same dream a handful of times now since October. I don’t wake up sweaty or scared, it isn’t a nightmare or complicated David Lynch style dream metaphor. I know what the dream means and it just fills me with the feeling of sadness that seems to stay with me throughout the day.

But the ride isn’t over, not yet anyway and as cliché as it sounds, the only thing you can do is keep moving forward.

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