What if I only live until age 45?

I know. The title of this post is a little dramatic. So let me explain. I have an illness called CVID, or Common Variable Immune Deficiency. You can read about it here.

This means that my body makes zero, zilch, nada, antibodies that fight any infections. So, I've been chronically sick for the last 20 years. Problem is: comes with a high rate of infection, cancer, specifically lymphoma, specifically lymphona in women.

My symptoms, really all started when I attended performing arts college and although a profoundly amazing experience, it was intense, to say the least. Tonsils, bronchitis, pneumonia, IBS, and so many more issues followed. I continued. Marriage. Still sick. 6 miscarriages. More bronchial infections, 30 or so (I'm guessing) ear infections. Two babies (thanks to a smart doctor who started to figure it out), tonsils surgery, sinus surgery, shingles, E.R. visits.  

Guess who still performed? My most vivid memory of being on stage while so sick was Sweet Charity at Center Rep a couple years ago. I could BARELY hear the orchestra. Turns out, I was on key...but I have no idea how. I felt like I was singing a quarter tone above the orchestra. Ugh. 

The first time my symptoms reared their ugly head my father was dying of Lymphoma. 

Fast forward 20 years and I FINALLY got a diagnosis of CVID and have been receiving intravenous antibodies from people who donate plasma. Once a month, I go into the chemo/infusion clinic and receive a four hour infusion that is, quite literally, keeping me alive. 

Four weeks or so ago, I began googling more in depth research about this issue and didn't quite like what I saw. Then again, if you google anything about anything, you can find things you don't like.

I saw this:

Average life expectancy for this group of individuals in this study, age 45.

WHAT? I just turned 40....cue the freaking out quietly in my bedroom while I watched "Real Housewives of Beverly Hills". Then I proceeded to send off links to my husband and my mom who has really been my health advocate and basically the only reason I was even diagnosed. 

Needless to say, they calmed me down and pointed out some important issues in the study. I got calmer. I still have a lot of anxiety surrounding this fake death sentence which has plopped it's voice directly into my brain and is having trouble getting out.

If you know me, you know I'm a go-getter, goal oriented person who has lots of ideas and often thrives on adrenaline to get me through a project, complete a musical, teach a class, create a giant flash mob, etc. 

I want to DO something about this issue. I want to FIX it. I want to CONTROL it. The best way for me to do that is to calm the f down, literally keeping my body free from inflammation. The problem? I love being excited. I thrive on new momentum to complete a task. In short, my career has evolved because I hustle. 

What happens when I hustle too hard? I get sick.

So................ decisions have to be made. I don't think I'll die by age 45. I don't. My father was diagnosed at age 49 and died at age 58. Did my father have what I have? Don't know, but they suspect so. He was never tested. 

The biggest lesson I learned from my fathers death and reading his 20+ years of journals?

Don't sit and write things down about how you want change. How you THINK you should write a book. That you WISH you could quit your job. That you HOPE to make a change. Do it now. Take action. That is what I have learned.

My biggest dilemma (other than looking up how to spell dilemma?) 

Making changes in my life that will allow me to be on the right path.

It's so difficult to give up portions of your life that you need to set aside for the greater good. 

And if I really ask myself the TOUGH questions I can quietly hear a voice in the back of my head. What does it say? This.


I know. Cry me a river. But, this is about transparency and staying true to me.

Why is that so scary to admit? To say out loud? I guess, because it's defined me for the past 20 years. Because change is hard. Because that's a fun dream and I've had some success. Yes, I've had failures too. And that is part of it. It's difficult to write three musicals over the course of ten years, hustle to get them made, sometimes succeed, sometimes get bad reviews, sometimes have people say this is the best thing they've ever seen and then the next guy say the worst. To deal with gatekeepers, not have your vision completed and then find out that after spending a good portion of your life and your families life and energy to no avail.  It's hard.

Is it worth it? Yes. There's nothing wrong in theory with saying here is my portfolio. Here are the things I've accomplished in 20 years. Take some of them, leave others. Here's what I'm doing now. Here's what I have to offer.

But it's hard to move on. I'm a gal who likes structure, despite not living a very structured life. So, I've made the decision to take a year break to focus on what I THINK I really want to do. 

What's that? I'm working on it. Follow me for more to come.