Rookies

I was looking through old journals today to track down something.  I flipped through them and eventually turned to the page dated the day I was diagnosed with mast cell disease.  I sat down on my bedroom floor and read the entry, the following several entries.  I felt this sharp pang in my chest, quietly speaking the words aloud.

“Looked up the low histamine diet.  Will never be able to do it, so restrictive and impossible.” I smiled wistfully. How lovely to live in a world where not doing impossible things is an option.  I was a rookie.  I had no idea what was to come.

Someone commented earlier today that it was hard to read what a lot of us write in the forums.  She is a rookie.  I am by nature a comforting person, and I always want to give these people a big hug and assure them it will be fine.  I wrote a response and ended it with something like, “Don’t worry, you’ll be like all of us soon.”  I deleted it with a lump in my throat.  I’m sorry that these people receive news and become part of this community.  I’m sorry that they will someday know everything I know because they have to live with this, too.  It just seems so wrong. 

But since they have to walk this journey so many of us are taking, there are a few things I want them to now.

You’re one of us now.  I know you never wanted to be – and neither did we – and that’s okay.  We understand that you are grieving the loss of the life you lost and that we are tangible reminders of that void.  It’s okay for you to take a break from us for a while.  We will still be here when you come back.

You don’t have to apologize for asking questions and not knowing things.  We wish we didn’t have to know them, either.  We are happy to let you learn from our experiences because maybe it will make your life a little easier.  I find that helping the new kids makes me feel like there is some point to my suffering.  Let us help you.  One day, it will be your turn to help the rookies.

We care about you and we want to protect you.  We know how overwhelming it is in the beginning because we were all overwhelmed.  If you feel that people are sometimes sugarcoating things, they very well may be.  The most important thing is for you to be okay and learn to live without fear of this disease.  There is time enough for you to learn everything once you have achieved that.   

Not everybody is as sick as us. The ones who are very stable or don’t have symptoms are usually not the people who are highly visible in online forums seeking support. Due to the hypervariable nature of mast cell disease, you don’t know if you will get worse or better. When you hear our stories, please know that they don’t necessarily represent your future. You may never be as sick as us. And in a few years, we may not be as sick as we are now.

I know you never wanted to be part of this.  But you are now, and so are we, so we can do this together.