When I was really ill in 2004-2009, I will admit I came close at times to completely losing myself & my sense of humor in an intense battle against two rare diseases which were taking turns at the time trying to pummel me into the ground literally (I don’t say that to be dramatic).

Fortunately later in 2009, (and up until very recently) there was a drug treatment that I responded to that slowed the progression of both of my illnesses & gave me a 5 year break from “medical hell”.

This break afforded me an opportunity to live life outside of hospital walls & constant doctor visits. It took awhile to adjust to things being quiet after so much chaos. I was so used to things being so upside down, my body became hard-wired to the chaos without me realizing it until much later.

I still struggle sometimes but somehow I always manage to “suit up for battle” when needed & try to find ways to process, cope & strategize.

In fact, this blog was started for a selfish reason. The prospect of facing lung transplant evaluation testing in a few weeks was increasingly unnerving me. This was foreign territory & I was having a hard time wrapping my head around it. I needed some way to focus that nervous energy in a positive way.

I had been toying with the idea of starting a blog for years, but couldn’t settle on anything to write about.  Add this to the fact, that I “geek out” on a lot of what some people may perceive as “boring stuff” like healthcare issues & advocacy. Admittedly, I was not going to find an audience for that to mull things over with through Facebook alone.  So, upon the advice of a friend who knows me very well, I said to heck with it & started this blog. If for no other reason to feel productive & kill time (since at least temporarily I couldn’t work).  I started it on August 1st & it quickly became a habit, along with checking Twitter for interesting tweet chats & content that I can mull over if I feel stuck on something to write about. Or find some article I read in my geeking out & try to give it a unique perspective & tie back to my situation.  It’s been a great outlet for me.

Another friend of mine, came up with another great strategy that has helped me too.  Normally today I’d be at improv comedy rehearsal with my teammates.  I am by no means a “star performer” (if it even exists) but I’m so glad my friend (who I think is) encouraged me to try it out for myself & take classes on my own a few years back.

I’ve been able to meet new people in my community & make some other friends in the process. (One even knows all too well what a nerve wracking whirlwind transplant can be.  I pick his brain quite frequently & he has been a big help in setting some things in order).

I have a lot of fun during “brain gym” (as I like to call it).   It also is such good mental exercise for me. It gets all kind of neurons firing in all kinds of creative directions. It’s not always easy to do it, (admittedly) but it is a valuable learning process & art form.  I’ve even read articles where they’ve used it to help people with anxiety, dementia, & a few other problems as well. So one could argue it’s an art & a science.

I’ve found it has helped me in so many aspects of my life beyond those I just mentioned.  I’ve been able to think on my feet more in business situations that would frustrate the hell out of me in the past.  I’ve actually been able to do public speaking totally extemporaneously without having to draft a speech ahead of time (unless it needs prior approval by a person or organization).  It’s expanded my wit and sense of humor.  It’s also helped me roll with the punches of life because there were times when I doubted myself, wanted to quit, but yet still couldn’t manage to give it up.

When I’ve felt that maybe I’m not cut out for it, I’ve met others who felt similarly at a point & provided encouragement. I find though,  I’m as much or more a fan of performances, even though I do enjoy performing. If I’m having an off-day or week, I go out to a show or see some stand-up (to mix things up if I feel like it) & come back feeling much more calm & cheerful (as cheesy as that sounds).

It was especially important recently because when my health started to tank again my once “invisible illnesses” became suddenly apparent when I had to start using oxygen.  I’m a fairly confident person, but admittedly I was nervous of the reactions I was going to get to this change. I was also very uncertain of it was the start of more of the same “crap” that I had a 5 year reprieve from which did turn out in the end to be true, unfortunately.  But at least with this I had a distraction. My Monday night improv class. We were learning a structure called “The Harold”, which takes a lot of brainpower & memory work, but is the basis of a style of improv called longform.  (Put it this way, it’s a bit of different style than “Whose Line is It Anyway” which you may have seen on TV. I enjoy that show but it’s different.)

That Monday night I was taking my most recent class was long because I often had work.  I had to report in earlier to make class on time, & then race right out & drive home to head to class. I’d be starting my day at about 5AM when I got up (since I worked an hour or so away), to about 10:30ish when I’d finally wind down.  But it was a pleasant distraction & if I had a tough day, it helped take my mind off of things.

Yet, it did more than that too. About 2 weeks into the class, I was told I needed to start using oxygen for exercise & for exertion. I needed to start monitoring my oxygen levels during rehearsals & classes to make sure I wouldn’t drop too low unexpectedly which really seemed awkward to me at first.

I remember not wanting to say much about it until I had to, but it somehow slipped out. But I couldn’t have gotten more support for sharing that with my classmates even when I hadn’t really intended to.

I was told by some other women with my disease to “first get used to wearing oxygen in places & situations where you feel most comfortable” to make the adjustment easier.  I felt that solid advice to consider.  I brought the tanks to classes & rehearsals first since while public, it seemed the safest space for me to adjust to my new normal.

Yet, this was more difficult for me at first than I admitted to for one simple reason: When I’m up on stage, my illnesses are not there with me. I can be anyone or anything I want & those curse words of tuberous sclerosis complex (TSC) & lymphangioleiomyomatosis (LAM) don’t exist; unless I want them to in order to poke fun at them but I haven’t been inspired to even do that. I just enjoyed having one element of my life that was mine & could not be invaded by them (or it seemed that way for awhile).

Yet, even that was made easier for me to work through.  One of my first public appearances with my oxygen was attending an improv show, and it felt so much less awkward after that.  I was able to joke around about it as I felt comfortable doing so, & no one treated me any differently on the rare performance I had where I had to wear it.

In fact, some of my strongest supporters outside of my two friends I first mentioned — are my improv teammates & some people from other teams. As well as others from the comedy scene here as a whole.

I was even able to still volunteer at Del Close Marathon in NYC this year using my “jet pack”, which is my pet name for my portable oxygen concentrator. (This is a machine that helps me get oxygen on battery power & it uses the surrounding air. I then don’t have to use oxygen tanks or bottles. It’s a relief because then you don’t have to worry about running empty or carting around a bunch of stuff. I can charge it in my house or my car, so it’s seldom I run low on power.) (I do look like I am going to blast off to the moon when I wear it).  The reaction was so positive overall, better than what I had hoped. It was the first time I had been outside my local community or office with it, so that was another big step for me. It made me feel good & it reinforced that I didn’t have to give up on some of my pastimes because of this new change in my life.

Now that I have to wear it pretty much 24/7, I  go out in public regularly & don’t even give it a second thought or feel at all self-conscious about it.  That little improv safety net was the just the start I needed.  It also took some adjusting to at first (using it for different things – often a process of trial & error), but it made me feel secure to know I didn’t have to stop performing just because I needed to use oxygen either.  I’ve had a lot of losses because of my illnesses but I try not to focus on them.  Others I’ve been able to offset some of those potential losses by adapting to them or finding new ways to do things. This was no exception.

But also by far a big help was this book, Improv Therapy, by Jimmy Carrane. Jimmy is a well-known improvisor & teacher from the Chicago area.  His book helped me during a very tough winter with anxiety & self-doubt. I’ve re-read it a few times since (including again after I started having breathing issues again). I always take away something new & helpful each time.

He also came to our area this past winter & hosted some workshops. One of them was what he calls “The Dark Side” workshop where he takes tough & emotional subject matter & teaches you how to play with it.  The key to most of his workshops focuses on the importance of being  (& playing) “real”.  After 6 hours, not only did I feel I was a better improvisor but even more self-aware in the process. I realized just how much improv has allowed me in a very fun & disarming way to finally “heal over” from some very tough experiences.

Jimmy knows about tough personal situations. In his Improv Nerd podcasts he talks about his own life & insecurities but then also asks such smart & thought-provoking questions of the performers he profiles.  Listeners really “see” inside them much more than a glimpse from just a “standard” interview.

I was very lucky to also see 2 tapings of these podcasts in person as well during our local improv festival & I think everyone agreed that it brought our “small-but-mighty” scene here closer together.

I have been given an incredible gift with this “hobby”.  I also was fortunate because while I always tried to keep my sense of humor in tough times, now I have a real tangible way to do that, outside of just wearing funny T-shirts to doctor visits (which sometimes still works for me;  depending on the sense of humor of the doctor).

I also took a story-telling workshop over the winter that helped me grow immensely too. I found I did have a voice outside of the speaking to the nonprofit volunteer circuit that I usually do (which don’t get me wrong, I enjoy).

When I told the story in the class it was about me and other aspects of my life.  Again, it didn’t even touch on my health issues, which was a refreshing change & pleasant surprise. It reminded me that while I have a strong voice, I have unique qualities outside of this realm of advocacy & awareness that are equally important.

It also helped me later when I was late to a public speaking engagement due to a snowstorm.  I had drafted an outline the night before (not that needed one),  but didn’t have time to use it & I did just fine speaking completely on my feet & in the moment. Normally (before any of this work) I’d be so off-guard & even more nervous than the slight nerves I’d get in my few seconds of speaking.  But I walked in calm & relaxed after (I had called ahead to let them know of the weather problems & bus delay).

In fact, I think it was one of the better talks I gave, but I did it completely without drafting any of it out ahead of time like I would have to usually.  I didn’t rehearse it like I would normally either. I just used a very rough outline generated the night before to organize what I felt was important to touch on that I might figure I might forget with nerves. I generated the outline off of some of the new brainstorming techniques & writing prompts I learned (thanks Giulia!).

What is the point of this post? It’s not about healthcare. It’s not about transplant.  Its about me & my relationship with myself  (& the world) outside of my illnesses.  Something that so many of us who get caught in that never-ending cycle of sickness forget all too often.

In closing, I’m not afraid to admit that I’m nervous as hell as I write this. I start my lung transplant evaluation tomorrow morning.  But I’m going to treat this like I would an improv audition.  Admit that I’m nervous as hell. Know that’s ok & understandable.  I just have to show up, listen, & react, & do my best. The rest will work out.