In Memory Of The Girl Who Spun Fire

I know I’ve talked about death before in past posts like this one, and this one.   When I do it’s because it hits close to home. These were LAM sisters I knew & had met.

I’m getting sick of the losses. In fact, after 12 years I stopped counting because it was too painful & I knew too many women.

I hate this disease so much & how it not only robs breath, but so many other things. It cheats & steals.

My first big personal loss was 2008 with one of my best friends.

She had LAM & TSC like me & was hoping for transplant at some point but her kidneys were in bad shape, & she had other medical problems complicating her ability to list.

This was even before the time of good portable concentrators.  I remember her & a friend coming out to a birthday party my friend & were having in Long Island, lugging a concentrator on the LIRR & wheeling it to my house.  This was no small feat, I assure you but she did it because she cared for me that much.

Her family dynamic was intense & complex. I never heard from any of her sisters (even though they knew me & knew we were close) instead I read about her death on The LAM Foundation website after the fact.  It hurt me for a very long time.  I did get eventually get closure on knowing she wasn’t in pain & wasn’t alone but it was a devastating way to hear such news.

Then another one of my friends couldn’t get a transplant because they found she had a really stubborn & dangerous & treatment resistant infection.   This was someone I had met at a Lamposium years ago & we bonded over the arts & several other things.  She was a true voice of reason & a strong support for many of us.

It was jarring to us when she left.  No one really knew how sick she was until it was too late.

In fact, I was finally over some infections and I was planning the day before to go after work on Friday to see her.  Found out before I finished my shift she was gone.

Now, Misty.  I met her last March.  She was a very talented woman who spun poi & was a single mom who had overcome so much already,  she was in her late 20s.    At the time I met her, she found out not only that she had LAM  but they also recently discovered she had TSC as well.

One of my other friend’s husbands used to joke I was hospital buddies with his wife since were usually went in and out at the same times.   Misty was another hospital buddy.

When I was recovering from my car accident in October, she was overcoming a blood clot & infection in her leg.  The nursing home she was at complicated matters by not dressing her wounds properly & that led to a whole host of complications where she almost lost a leg.

Yet eventually she came through that.  We’d check in and send messages of support every so often over chat.  She even found a way to make her own poi & spin while she was in the hospital. Clever girl for sure.  I love this video for that reason.  She made the best of what she had where she was at.

Just last Saturday we were texting over her latest situation & I was relieved that they were working to get her pneumonia and lung collapse better so she could list for a heart & lung transplant.   I had no reason to believe she wouldn’t pull through.

Misty didn’t sugarcoat the reality of what she lived with. She wasn’t fake positive or in denial. She just had her iron will to keep going.   She told me she loved me but she wasn’t ready to give up when we texted last Saturday.

She went into a medically induced coma shortly after that weekend.  But I kept sending her texts every few days with some silly emoji’s so she’d have something to wake up to when she felt better.   I had no reason to believe she wouldn’t pull through.

Then Saturday night I found she had passed.  She leaves behind two little ones that she was an awesome mom to, a wonderful boyfriend she had just planned to marry.  He made sure she was supported through all of this & did a great job of keeping us all updated on things even though I know it was hard for him to do with so much on his plate.

She would have done wonderfully with the transplant.  I promised her after I found out she died that I would get through my lung transplant when it happens for both of us. I have a very strong and positive feeling about that.  I do have this one, for her,  my best friend I lost (Elizabeth), & my friends & family. I know it in my heart.

Breathe free Misty.