Back When…

After my red-tape runaround this morning (with trying to be released from the nursing home/rehab center), I did settle down but then couldn’t come up with much to write about. What I saw in my feeds were other bureaucratic & public policy & health nightmares & it pissed me off. I had my fill. I skimmed them, filed them in my head, maybe saved them for another day.  Luckily I was distracted by a call from one of my friends in New York I hadn’t heard from in awhile & that was just the reset & refocus I needed….

Still, the words & thought aren’t coming today like they had been. But I know that’s ok.   But then, just now, that phone call triggered some memories & past conversations.

Something stuck with me since August.  One of my the first followers of my blog (that I didn’t know in person) had asked me a telling question in one of my first few posts. I had been asked this  question at times too from other members within the  LAM support group. Mostly, women who were newer in the journey of diagnosis. I remember being there myself and asking it of others.

“Do you remember what you felt like before this disease intruded on your life?”

Yes, I do.   But then again, I don’t. It’s not that straight of a line for me…

Before I had LAM, I had TSC.  TSC is a genetic disorder. I was the lone renegade in my family born with this rare genetic disease.   I had seizures from 7 months of age to about age 3.  I used medications that barely even work on anyone anymore since that’s all there was.  No one knows why my seizures stopped, but not a day goes by that I’m not thankful.

I had a relatively normal childhood.  Some were aware, some were not.  I felt normal, yet at the same time I carried the knowledge of knowing I was different & my summers were fun, but were always spent with a specialist check-in every 2 years or so until I was at least 16. This was about 5 hours away because this doctor was one of the few who actually knew this disease & did his best to treat it without it disrupting my childhood further.  I still thank him to this day (John T. McDonald) for what he did for my family after a local pediatrician basically told my parents that I would die but without an explanation, further study, or actual diagnosis.

I graduated high school, went to college, changed majors, & then moved on. Like many of my classmates & children I grew up with.  For some, I’m an inspiration because I moved to the East Coast after college (not knowing many people there) just to experience life outside rural, small town America for myself. They think that was ballsy, but I just felt I didn’t want to be bitter over never taking a risk when I had the opportunity to do so.

Speaking of which, when I moved to New York in 2000, I was in my youngish 20s & doing some real cool things (as cliche as that sounds).  The swing & jazz music radio show I had created while in college by leveraging the wonders of the internet had opened doors to me for a nice after work nightlife. I knew I didn’t want to do music as a career on the business side, so I did temp work until landing in the internet sector.

My first real full-time job was working for a startup that created digital textbooks for college students.  Yet, in my off-hours, I was immersed in the swing, jazz, & lounge music scene in the area.  Live music was a treat that I didn’t often experience growing up & I loved it.  I even had the opportunity to dj a swing night at Webster Hall in NYC & a few other venues. My life was my own. I wasn’t having any issues from LAM or TSC.

Then 9/11 happened & things changed. Live music wasn’t what it was.  People didn’t even feel like going out for awhile after.  Clubs were suffering.  A cult of dancers started cutting bands & replaced them with “dj’s” with iPods.  Live music in the form as I knew dried up, but then it was also harder to come by in other genres than the one I had been immersed in.

I felt like changing gears with my free time.  I had a stint of temporary yet full-time work at the Fresh Air Fund for the summer of 2000 & I wanted to do something like that again. I was hoping it would lead to something in the nonprofit sector since I really enjoyed it, but it didn’t. I was hired but then 6 months later laid off that internet job after the initial dotcom crash.  Luckily, a contact there found me another job where I remained for 3 years.

So, during that time, I decided to build those nonprofit skills on my own & at the very least give back to others.  I started volunteering & going to local support group meetings for the NY/NJ Metro Community Alliance.  That led to opportunities with the TS Alliance on a national level.   I even won a national volunteer award in 2005.  I also received a standing ovation for speaking at the 30th Anniversary celebration, which floored me because I was scared speaking in public then even after years of 4-H talks as kid.  The list goes on.  I had changed jobs (after another layoff) & landed at Medscape in 2004, where I remained for the next 8 years, even after moving to Pennsylvania in 2010.

I still felt that TSC wasn’t intruding on my daily life much when I first changed gears & certainly not in my music loving days. Yet slowly but surely from 2001 on – it crept up.

First with a lung collapse on New Years Eve of 2001/2002 where an astute resident cared enough to look into my medical history & tell me about LAM. My actual diagnosis & first symptoms didn’t come until Fall of 2003.

Yet by 2004, LAM made it clear that it was the bigger bully & was using my other disease to get in extra punches. It smacked me in the face at work with a lung collapse doing nothing more than picking up a piece of paper off the printer.  I had been working at Medscape for 6 months by then.  I was scared this was seriously going to lead to kid-gloving & professional problems & having to disclose these damn diseases to people I really didn’t want them disclosed to. A rude awakening.

From 2004-2009 I had almost 10 surgeries.  These two diseases took turns beating on my lungs & kidneys & occasionally other organs. Yet somehow even with a few brushes with death at their hands, I kept going & kept doing.

I went to Congress and pushed for more research funds,  I built resources with a long-time friend & mentor for adults. I even served a year on the Board of Directors.  I did much speaking & outreach both locally and nationally.   Through it all I continued to work professionally when I could in between assaults & surgeries.

By late 2007, I was frustrated & scared. I felt that the one-two punch was beating on me physically & mentally.  I started digging into research as I started seeing more & more friends fall from both diseases.   I needed hope too.  I stopped volunteering because I felt the battle intensifying & I needed every ounce of energy to myself because the hospital stays were longer & healing was slower.

Plus, I was tired of carrying the torch as far as volunteering. I didn’t feel I was making inroads to change like I used to.  I also had a hard time pulling in fresh voices & hands.

In 2009, hope came in the form of Rapamune.  I felt beat up, chewed up, & spit out. I didn’t even expect the drug to change things but it was at the very least it was something.  Something that might give me a temporary break. Even my most conservative of doctors agreed I was out of options.

I had a 5 year “honeymoon” on that treatment. Even though on paper there was still some decline.  By the time I started the drug I was slightly under 50 percent of a normal person’s lung function.  But I felt better.  I had more energy. I was bouncing back.  My breath, although short, was manageable.

At that point, I gave myself permission to live for myself & to be selfish.

I moved with friends to Pennsylvania in 2010.  It took awhile to meet people but my best friend found an improv class, took it, & then suggested I might want to do it, too.

I did, and up until a few months ago, I was still doing it. On a team though even though we didn’t perform often, enjoyed learning together.  I did this even with oxygen.

But this community was a great gift to me because I was living outside my illnesses.  I was learning, growing, & feeling. Seen as a person.

My friends had always stressed the need for balance in my life. As a Type A, I never really saw it before.

In fact, I did get burned out professionally & personally at points & it came with a high price tag. Yet, I couldn’t completely make the connection or learn the lesson.

Probably because while I was still working, I still felt “normal” & “in control” (at least over that aspect), & I felt reasonably healthy as long as I could always work, no matter how rough things were.

Improv helped me find balance to a degree (even though that wasn’t a straight line either & I had doubts in myself & my ability to pick up on it at points). Yet in spite,  I found myself carving out time to take classes, study, perform, rehearse; even hang out with others in the community.

Perhaps with something else as a hobby maybe I would have done this eventually too. However, I feel that this was a gateway for me into something.

This is due to the fact I was actually doing something artsy, which I admired. But I was not talented or practicing in a musical or graphic or other artistic sense or medium before that so I always felt somewhat a little removed from my artsy friends. Improv was a unique way to feel that emotional connection similar to so many of the arts I had enjoyed in my off hours.  I finally had something outside sickness & work to focus on.

Even my writing was often geared to a specific need or specific project. I would try to do it on my own but it wouldn’t come that often.  Yet, now, it’s coming… so I guess all I needed was a creative & healthy “jumping off” point to change gears with that, too.

I had gone back to volunteering after a few years, but I selected a few projects. Mainly those where I could make a real impact – in research.

I reviewed articles, & served on peer review research panels.  These didn’t take as much time & energy for me but I felt my contributions were greater. I was using ALL my skills, both professional & volunteer.

I sat alongside researchers who had helped me personally through a rough patch, or I had sat alongside many a national event. We were looking at the bigger picture together & they wanted my honest feedback.

So I guess the point of all this musing is that I do remember to a degree what a somewhat “normal” life was like, but only to a degree. Because that sense of waiting for the other shoe to drop was always there even when my health was fine.

The difference was that in 2009, when I was given a reprieve to return to those days with taking a chance on a then unproven treatment, I knew it was possible that it wouldn’t last (or may not happen).

I made a choice at that point I wasn’t going to shoulder that sense of dread, waiting for the other shoe to drop, like I had in the past.  I would live like I was free & clear until it actually happened.

And I did… until this past winter, when it reared its ugly head again.

Those years were a gift.

I had a taste to feel what everyone felt. Experience what they felt & be met as a peer & person – not a leader or a person with an illness or disease.  I was a student, a teammate, a friend. I still am.

These were not new experiences but not as commonplace for me as for others. Yet it held that same energy as the “old days” when I first ventured out on my own & was trying to find my way, interests, & direction.


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