How To Go On When You Lose a Huge Part of Your Support System

On July 2, 2013, my sister, Diana, was admitted to the hospital and over 2 weeks later on July 18th her husband reluctantly took her off life support. They said she had contracted a virus but they could not find one in her system.  Her body just went into overdrive and started to attack all her organs until there was nothing they could do.  She had type 1 diabetes but was probably one of the healthiest people I have ever known.

In the middle of those long couple of weeks she bounced back right before I had to go on a business trip.  She was not talking at first though she should have been able to. She was in and out of awareness and was able to use hand gestures to communicate.  She was always an expressive person just like my grandmother was and also just like I am. 

When I was standing by her and telling her that I was going to Austin for a couple of days but I'd be back to see her, she grabbed my hand.  With her other hand she pointed at me and shook it back and forth as if telling me no.

I knew what she meant.  She never liked me traveling and she thought I worked too much.  This came from a woman who worked over 80 hours every week at the physical therapy business she co-owned. On top of that, she did countless charity runs, golf tournaments and bike rides.  She also found time to visit family and friends.  She definitely put Superwoman to shame with all she did.

I told her she was being ridiculous worrying about me as she laid there fighting for her life but that was my sister.  She always was the big sister and worried about me. At this point we all thought she would pull through so I went on that trip.

I did actually get to talk to her one more time face to face when I got back from Austin.  She was snarky with me (sarcasm is a huge part of how my family communicates) and was telling everyone she was going back to work in a few days.  We all just shook our heads knowing nothing we could say would stop her.

The day after, I got what we thought was poison ivy (it took 8 months later for me to find out it was a reaction in my mast-cells and not poison ivy) and I was not allowed to visit her in the ICU because of they were afraid she would catch it and she did not need another thing for her body to fight.  The next day, I texted her a picture of my bloated face and told her to cheer up because I looked much worse then she did at that point.  She texted back and said that I looked miserable and she didn't want to talk to me but I should go jump in the pool.  That was the last communication I had with her while she was alive.

The day after that text she got a liver biopsy and then slipped into a coma.  Two days later everyone met at the hospital.  There was a lot of people there at least 30 or so just waiting for news.  I was still not allowed to see her and I cried as I watched everyone else go in and get a chance to stand by her.

Later that evening as everyone but her husband and my other sister departed, they let me in to see her.  I knew in the back of my mind the reason I was allowed in.  I knew it was the end but did not want to admit it.  I still tried to cheer her on with my other sister, Elizabeth, and her husband, Bobby, looking at me like I was a crazy woman.  Not that those looks were something new.

After 1AM I drove the 25 miles home and first begged for help and then cursed out every person in my life that had passed on.  I wanted that miracle.  I never wanted something so bad in my life.

The next morning my sister called me and Bobby had made the decision.  Diana would not want to live her life as a vegetable and it was time to pull the plug but he was waiting for me and my parents to get there.

My heart broke that day in a way that will never be fix.

Diana was not only my sister, best friend, confidant and sometimes my co-conspirator but she had been the one person by my side the whole time I was trying to figure out what was wrong with me.  She was the first call I made after finding the information on Dercum's.  She was the first person in my life that actually read up on Dercum's and helped me figure out a plan of action.  She was the person I called after every frustrating doctors appointment and when some new weird symptom popped up. 

Though I know she is still here with me (I feel her almost everyday) I miss her tremendously.  I don't think I'll ever have the same connection to another living soul that I had with her.  Don't get me wrong, I still have some extremely supportive people in my life such as my parents, my aunt, my other sister and, the most important, my husband, Phil.

There are still at the very least three times a day that I want to pick up the phone and ask Diana advice, tell her what's going on or just bitch about everything and anything.  Now because she is not there for me to talk to almost everything I do, I think about what she would say or the advice she might give and that is how I go on without her.