2014: Seeing The Good Despite The Devastation

People always seem amazed that with everything I’ve been through in my 30 years (Multiple Sclerosis, recurring infections, amputation, the death of my friend and Lil Sister, the death of my biological big sister, PTSD and more) that I can still see the good in the world and in my life. I guess it’s just the way I’m made. I wish I had a better answer for it than that but that is the only way I can explain it.

I’ve always said that I’m a realistic optimist. I attempt to find the good in things or at least the humor in it but I’m also realistic that some things are just plain bad. I’ll have been battling recurrent infections in my right leg for 11 years in February. I used to get my hopes up that THIS surgery would be the one that stopped it or THIS medication would be the one that killed it all off for good. Over the years, though, I found that I couldn’t keep thinking that way because my hope balloon never failed to be popped and the more times that happened the more disheartened and depressed I would get. I still hope that one of these days the infections will end with a surgery or a medication but I’m realistic that they may never end. This is what I mean by being a realistic optimist and this is how I generally look at things in my life.

2014 was a really rough year with some seriously devastating events. I spent time in the hospital almost every month for surgery on my nub due to infections. I was told I may never walk with a prosthesis again which I’m oddly OK about but was also told that I have some major decisions about my nub and further surgeries that I'm going to have to make sooner rather than later. I suffered 2 more hemorrhages from my nub (thankfully one was while I was at my PTSD therapist's office because my PTSD went into hyper-drive and he stayed with me every step of the way that day) and developed sepsis scaring the hell out of everyone. My old surgeon was truly afraid that that was the end for me. My chest port, which is vital to my existence because my veins blow after just an hour or two with an IV in them, became infected and had to be removed and later replaced. I switched hospitals and surgeons because the surgeon I’ve had for the last 10 years and I have become far too close and my time in the ICU with sepsis pushed him over the edge. As my sister told a friend, if Bobby ever had to come out and tell my folks that I had died on his OR table it would end him. It’s not like he’s never delivered that particular news before but because of how close we are it would be as though his own daughter had died on that table on his watch.

Of course the final and most devastating blow of 2014 was when that same sister was diagnosed with brain cancer. I’ll never forget September 4^th 2014 because it’s the day that my mom took her to the ER, the day she was diagnosed, and the day that on my drive home from the cardiologist I figured out what was wrong. I knew what they were going to find. I’d been putting the pieces together thanks to my knowing too much medically and having seen what happened when my Lil Sister’s bone cancer spread to her brain. My mom didn’t want to know, all she needed to know was that I was worried which scared her because I rarely show that I’m worried about something especially when it’s medical.  My oldest sister, a beautiful, brilliant, amazing, loving, artistic, quick-witted sister passed away not having even made it a full 2 months from the diagnosis.

Yes, a lot of very hard events took place in 2014 but it hasn’t all been bad. To counter the bad I can honestly say that 2014 has also been a year of good things as well. I was surprised for my 30th birthday by a party with some of the most incredible people I'm proud to call family and friends complete with a book of memories from friends from the past and the most influential people in my life. It is full of messages about life and about me as well as words of wisdom. My family reached out far and wide to create this book even getting in touch with my dear friend who lives in New Zealand. I made some amazing new friends. A friend I haven't seen since the day we graduated high school when I made him open my diploma case and make sure that there really was one in there was in town and knew I was in the hospital. He made a point of stopping to visit and share some laughs as he himself knows what it's like to be hospitalized and quite sick. I spent a lot of time with the unofficial 4^th Jones sister, her amazing husband and got a lot of toddler time in with their beautiful daughter Miss Maya (I even include getting the 1,2,3,4 song from Sesame Street stuck in my head as a good thing)! I had a great dinner with a FB friend and got some Sister From Another Mister time in too. I got to spend some great days with an aunt and uncle we don't see nearly enough and reconnected with an uncle from the other side of the family.

I’ve had a lot of hard years in my 30 years but 2014 takes the cake as the worst and I’m not sad to see it go. I do keep in mind, however, the good things that happened. Why? Because we all get lost in the darkness sometimes and remembering the good times in the light we need to find our way out.

My Sister, My Friend, My Everything

I haven't posted a blog in quite some time because the lives of every member of my family have been turned upside down in a gigantic and heart wrenching way. I am the youngest of 3 daughters. My oldest sister is 7 years my senior and my other sister is nearly 6 years my senior. I am the youngest, the baby of the family, by far.

I've been sick since I was very young. We didn't know it at the time but when I was still a child I was sick with Multiple Sclerosis, a chronic, progressive, debilitating disease of the central nervous system. It wasn't something doctors thought that children got so no one looked for it until 11 years later when an amazing neurologist took the time to really listen to me and run some simple tests. He told me at the time he knew I either had a brain tumor, MS, or ALS and of the three MS was the best option. There's a very sad irony to this that we wouldn't know until September of this year.

MS lesions had been found in my brain in 2003 when he was concerned it might be a tumor. A Stage 4 Glioblastoma - the most aggressive and always fatal form of brain cancer - was found in my oldest sister on Sept 4 2014. She had surgery to remove as much of it as they could but it continued to grow and expand and on November 2nd just two days shy of 2 months my beautiful and brilliant sister passed away here at home surrounded by her family and our cats.

Those 2 months from diagnosis to death were the hardest 2 months of my life and believe me, I've had hard times. I've endured over 50 surgeries including the amputation of my right leg for recurrent infections and have nearly died more times than I care to count between serious bleeds and sepsis. And yet, the worst and hardest 2 months of my life were the months I spent beside my big sister.

I have pretty severe PTSD when it comes to hospitals because of everything I've been through. The noises and the smells and the rooms all trigger me and flood me with horrible memories. While my sister spent over a week in the ICU she had no memory of it. I remember my time spent in ICU and visiting my sister there nearly killed me on the spot. A lot of people told me I didn't have to subject myself to the PTSD demons because whether I was there or not my sister knew i loved her. The thing of it was, this is the sister who absolutely HATED all things medical with a  fierce passion. However, when I was at my sickest, when the reaper was closing in on me, my sister showed up. I had to show up for my sister. I struggle with the PTSD of my days sitting next to her hospital bed still and will continue to. I struggle with the PTSD of being the one in charge of her at night once she came home for hospice care. I have insomnia and I tend to roam around at night when I get restless and knowing that allowed my parents to sleep because there was no doubt that at some point I'd be out there with my sister.

She was pretty non responsive for her month at home in hospice care. I spent a lot of time sitting with her, holding her hand, playing on my iPad and singing along to whatever Pandora station we'd chosen for that day. At night I'd prop my leg up on the bed and start our 1am conversations with "so did I ever tell you about the time I..." I was babbling to myself because she couldn't respond to me but I knew she heard me. She learned a lot about my past and my craziness in those midnight hours.

The final night of my sister's life I knew the end was coming. I grabbed a comfortable chair and pulled it next to her bed. I grabbed the blanket that she had made for me and I grabbed my iPod. I turned on a Peter Gabriel playlist and sat with her listening to music and holding her hand. She looked at me with an eye wide open for hours which she hadn't done in a very long time. Our dad found us there the next morning our hands still together and both of us fast asleep. At 8:25pm Nov 2nd, my sister passed away.

I'd be lying if I said I wasn't struggling. I miss her very much. I miss her teasing me and I miss her laugh. I miss her bright smile and I miss hearing "hey chickee" when she answered the phone when I called her. I miss being able to go to her to talk about anything and everything. My other sister and I have joined a club no one should ever have to join - the surviving siblings club. I find peace in the knowledge that my sister loved me unconditionally for exactly who I was, not for who she thought I should be or who I used to be. She loved me for me. She supported me and she protected me the way only a big sister can.

I lost a piece of my heart and I lost a piece of my soul the day my sister passed away. I don't understand why I'm still here. I'm the one who has been sick for years on end and has faced the reaper numerous times and yet, I'm still here. My doctors have feared the day I don't survive for years now and yet, I keep surviving. Why me? Why not my sister? No one can answer those questions. All I know is that I'm here for a reason and though I'm not sure what the reason is, my sister was proud of me and I WILL continue to make her proud.