I'm Still Me

I recently watched the movie “Still Alice.” For those who don’t know, it’s about a woman who develops Familial Early Onset Alzheimer’s disease. It’s the story of her decline and the struggles of her family and more importantly the struggles she faces.  In it she quotes Elizabeth Bishoponce who said: 

"the Art of Losing isn't hard to master: so many things seem filled with    the intent to be lost that their loss is no disaster” 

and continues on to say that as a person with Early Onset Alzheimer’s she masters the art of losing every day. As a person living with Multiple Sclerosis, PTSD, chronic infections, an unexpected death in the family and as an amputee I too master the art of losing. Losing control of my body. Losing control of my mind and myself when the flashbacks strike. Losing the future I thought I’d had. Losing my big sister, my hero, to brain cancer. And of course, the obvious, losing my right leg.

In that same speech she goes on to say that for now she’s still alive and has things she wants to do with her life and though she has bad days she also has times of complete happiness. She makes it clear that there’s a distinction between suffering and struggling and that she is struggling to remain connected. She’s learned to live in the moment and to master the art of losing. Her speech has stuck with me. It grabbed me as it was supposed to do.

Earlier that very day that I watched the movie, I’d been in a bad place mentally and emotionally. I’d gone to my PTSD therapy session depressed, exhausted, and feeling that I had nothing left. I had no more to give to myself or to others. I sat with my hat pulled down to cover my eyes and refused to look at my therapist who is an incredible therapist as well as an incredible human being. He made me look at him and asked a simple question. “Are you saying goodbye?” I’ll be perfectly honest that I’d gone into that session believing I would be saying goodbye because as I said I was done, I had nothing left. Instead, as he put a hand on my arm and looked me in the eye I realized I wasn’t quite as done as I thought I was and that I couldn’t say goodbye. During that session I discovered that I still have the ability to make jokes (sometimes morbid ones in relation to my struggles). I still have the ability to smile and laugh. I’m still here. What makes me the person I am is still inside me. I’m still here. I’m Still Meg.

I’ve changed. Who wouldn’t while facing the obstacles life has put in my path? I’m not the same person I was when this all began. I can’t be. I’m a new and different version of myself but I’m still here and I’m still me. I walk on crutches or use a wheelchair to get around and do what I need to do. I struggle with the symptoms of PTSD – the flashes of anger, reliving the events as though they’re happening in the here and now, the anxiety and fear, the hyper-vigilance, the nightmares, the times where I’m just numb and feel nothing at all, the intense and scary reactions to triggers. I struggle with having just lost my sister to cancer and all of the feelings such as anger, disbelief, and immense sadness connected to that. I miss her dearly and would give my other leg to have her back. I wear her thumbprint around my neck every day and find myself touching it and fiddling with it often because that talisman helps me feel her close to me even though she’s gone. Her cancer and death was a fast moving train that we never saw coming as we stood oblivious on the tracks.

She would implore me to continue the fight I’m in and to remember to live in the moment instead of being three steps ahead and worrying. I think that she would be proud of me for so many things but definitely for learning to master the art of losing. With everything I’ve lost I’ve continued on and seen every event as a speed bump on my journey through life. She’d want me to continue to do that so I will.

I have lost a lot in my short time here on earth. Many would say that I’ve lost more than any one person should have to endure. Many would say I have suffered more than any one person should. Perhaps they are right; often I’m pretty sure they are right. However, those were the cards I was dealt and I can’t reshuffle the deck. Instead, like Alice, I will appreciate the moments of complete and overwhelming happiness and continue to struggle to remain connected to this world and those who are important to me.

I’m a different version of the person we all thought I might become but that doesn’t matter. What matters is that I’m still here and I’m still me and I plan to continue to not allow my struggles to steal my essence. The journey through life can be tough and events and people will no doubt change you, as that is what life constantly does. Remember who you are and no matter what remember that you’re still here. You’re still you. Just as I am still me.  

Embrace The Suck

"Embrace The Suck" is one of my favorite military terms. I, myself, am not a member of the military though I would have liked to have been had my health not prohibited it. I do, however, know many of our brave men and women who fight for this country and our freedoms. My brother (remember that you do not have to be blood to be family) is a member of the United States Army. My dear friend Heather was a member of the United States Air Force. A good friend who I crossed paths with quite accidentally is a Marjah Marine and wounded warrior. "Embrace the suck" is a phrase I have heard repeatedly and is a motto drilled into me. 

To embrace the suck is to to accept that whatever it is that you're doing may very well suck and may very well hurt and be something terrifically hard to get through and holding on to the knowledge that failure will suck so much more. Everybody falls down during their lives and scrapes their knees and bloodies their hands. We're all the victims of disappointment and frustration when plans we put in motion and are looking forward to are suddenly and forever derailed. There is no doubt about it: life is going to put you in the trenches at various times and when that happens there's only one thing that the strong person can do and that is to embrace the suck. Please do not misunderstand. Being strong does not mean that you don't struggle or that you're always happy or getting through it all with your head held high. In actuality, being strong is more about knowing that it's OK to not be OK and that to have the courage to let others know that you're not OK.

So how does one go about fully embracing the suck? First you must identify the suck which can be a painful process because we often don't want to delve that deeply into our pain and trying experiences but we must. You must discover what it is exactly that is hurting, why it's hurting and how long it has been hurting. Those who say that they can't identify the suck are those who are afraid to look deep inside themselves and really know themselves.

Once you have identified said suck, you must tend to it as a medical professional tends to a broken bone or deep laceration in the skin. They disinfect a wound with things such as iodine, silver nitrate and surgery. The disinfectant you need once you've discovered and named your suck is knowledge. Read the self-help books. Scour the internet for chat rooms or blogs where you find others who can relate. Laugh. Cry. Shout. Be angry. Write the difficulties you're facing, your sucks, on old pottery and then smash them one by one. One of the most therapeutic disinfectants I have found in regards to my own moments of suck is to find an open field or an empty parking lot where no one is anywhere near you and start screaming. The only way you can truly do that is once you've discovered, dissected and named your suck. You'll know because in that moment of screaming you'll feel a release and begin to feel that you're taking control by letting all of the emotions tangled up inside of you out.

Once your suck has been identified and once you've begun to face it and disinfect it you must then find the right tools for bandaging yourself. Instead of gauze and steri-strips and stitches you bandage it by being honest with yourself and with those around you who care about you. You tell the truth. You turn to someone you trust be it a friend, relative or therapist and you talk openly and honestly. Do not be afraid to admit that you've thought of throwing in the towel. Do not be afraid to let them know just how low your suck has brought you but at the same time show them that despite it all you are determined to go down swinging. Go for long walks. Eat junk food now and then. Read sappy novels with no real content. Go out to that gathering you've been invited to. Go out to dinner or to have a coffee or drink with a friend. Remember what it is to smile a truly genuine smile. Get out there and do the things you've always loved and enjoyed. Though they might seem like little things, and they may well be, they carry the promise of removing some of the sting from what you're going through.

Finding yourself stuck in the trenches can be scary and quite painful at times. What you'll quickly realize, though if you are open to it, is that you're not alone and you've never truly been alone. We all, throughout the course of our lives, must learn to embrace the suck whether we consciously recognize it or not. One of my favorite scenes from the TV series The West Wing is when one character who has been a lifelong alcoholic takes another character who is suffering from PTSD aside and tells him the following story:

"This guy's walking down the street when he falls in a hole. The walls are so steep he can't get out.

"A doctor passes by and the guy shouts up, 'Hey you. Can you help me out?' The doctor writes a prescription, throws it down in the hole and moves on.

"Then a priest comes along and the guy shouts up, 'Father, I'm down in this hole can you help me out?' The priest writes out a prayer, throws it down in the hole and moves on

"Then a friend walks by, 'Hey, Joe, it's me can you help me out?' And the friend jumps in the hole. 

Our guy says, 'Are you stupid? Now we're both down here.' The friend says, 'Yeah, but I've been down here before and I know the way out.'"

Everyone in this world is fighting a secret battle within themselves that we just don't know about. We each have hurdles and we each hit potholes as we journey through this life. The day WILL come when we all die but I, for one, won't go easy. When it's my turn I will die kicking and screaming. I will rant and rave. My fingernails will be dug deep into the framework of death's door. I fully intend to go down swinging and embracing the suck the whole way.  

A Stupid Question

“If you knew how this would all turn out would you have had that original surgery in the first place?”

This is a question that baffles me not only because it’s a stupid question but also for the number of times I’ve been asked it. When someone new hears my story of my leg and how I came to lose it I brace myself to hear this question because it is so often one of the first things they ask. Personally, I would never even think to ask someone a question like that. It’s reminiscent of the old “Other than that, Mrs. Lincoln, how did you like the play?” It’s insensitive, insane, and utterly stupid.

Let’s say, for a minute, that I was going to answer the question and attempt to give an honest answer (which I most often do not unless I’m in a mood and respond with any number of well played sarcastic comments).  If I were to say NO, if I’d known how it would all turn out I wouldn’t have ever had the first surgery that led me down this horrific path then I’d in essence be saying that because I did choose to have the surgery I somehow made the biggest mistake of my life. Believe it or not, I don’t see it as such. I simply see it as having been dealt a bad hand but if it wasn’t for what I’ve been through there are a lot of amazing people in my life currently that I’d have never met and things I’ve done I’d have never gotten to do. If I were to say YES, if I’d known how it would all turn out I would have still had the first surgery then I’m in essence saying I’m a sadistic glutton for punishment and I’ve spent the last 11 years of my life having a blast loving every minute of the pain. Both of the above statements are false and in the end it’s pointless because it doesn’t matter. I don’t have ESP, I couldn’t have known, and like most things in life there is no going back. There are no do-overs.

Every surgery carries risk. If you’ve ever found yourself in a pre-op area all dolled up in the oh so beautiful hospital cap and gown you’ve had to sign a waiver stating that you know there is a teeny tiny percentage of a risk of complications and/or death. Infection falls under that category and every surgeon, unless it’s his first time out, has at least a miniscule percentage of infection in their surgical background. How do you think that happens? Nobody wants it or plans for it but someone has to be that teeny tiny percentage. I, unfortunately, happened to be it. I developed a post-operative infection in my leg following a routine arthroscopic surgery. It happens. It’s rare…but it happens. It’s a horror show for everyone involved but it happens. For me, it happened back at the initial stages of the superbug craze that is taking over the world and I unfortunately caught one with my right knee. I signed the waiver and there’s no way of knowing how or why I developed the initial infection that started this road to hell.

I don’t regret having that initial surgery. I needed it. Do I wish it had gone by without any complications? Do I wish I hadn’t lost my leg to it a few years later? Do I wish I wasn’t still battling against infection for my life? You bet I do but wishes are just that…wishes. I could spend my time dwelling on everything that went wrong and wishing for a different outcome but what good would it do me? I am where I am now and living the life I live now. Dwelling on what could have been or whether or not I made a mistake only robs me of whatever time I have in the here in now doing the things I love to do when I’m well and not in the middle of an infection crisis.

“If you knew how this would all turn out would you have had that original surgery in the first place?” First of all, why is that a question you feel the need to ask? Second of all, why does it matter? The next time a stupid question such as this one pops into your mind do yourself a favor and put yourself in my shoe. Answer it for yourself as if you were me and I think then you might realize the asinine nature of the question and never ask it in the first place.

12 Things To Know About Losing A Sibling

In Sept 2014 my oldest sister was diagnosed with Stage 4 Glioblastoma. It's the most aggressive and always fatal form of brain cancer. She passed away not even a full 2 months later. This is a list of things I wish I'd known about life after a sibling dies.

• It’s an incredibly lonely experience even if you have other siblings alive and well and with you through it all.
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• Most people have no idea what to say to you so they don’t say anything at all.
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• Most people have no idea what to do for you so they don’t do anything at all.
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• People are more comfortable asking how your parents are holding up than they are in asking how you, yourself, are holding up. It’s understandable. The loss of a child is a loss no parent should ever have to bear and it’s one of the most unfathomable things. There’s another burden a person should never have to bear though that is often neglected. No sibling should ever have to lose a sibling. I didn’t lose a child but I lost my best friend, my protector from the day I was born, my anchor, my rock, my confidant…my big sister.
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• When your sibling dies you become part of a very secluded group. I’ve heard it called the Sibling Survivors Club, the Dead Sibling Club, the Heaven Holds My Sibling Club and various other names. It’s a group no one wants to be a part of.
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•  The world in general doesn’t want to acknowledge your pain and suffering. It’s one thing to lose a spouse and be a widow or a widower. It’s one thing to lose a child. To lose a sibling, however, is just as hard but it’s swept under the rug. People come around sharing stories of having lost their spouse or child and empathize. Very few people come around to share stories of having lost a sibling. It’s not talked about.
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• Talking to your parents about it is hard. You see the pain etched in their faces and you don’t want to add to it. You want to shield them from any further pain and anguish. You want to only talk about the good times, not the tough times because your sibling has suddenly gained Best Child In The World Who Did No Wrong status.
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•  You never fully understand just how much your sibling means to you until they are gone. You THINK you know and you THINK you appreciate them but it isn’t until you know that you will never see them again that you realize just how big of an impact they made on your life. That sudden realization is heart wrenching.
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• Your life is forever changed. The impact of a sibling’s death is felt in every corner of your world and in every single thing that happens, good or bad. There will never be a time that you don’t miss them and wish they were there.
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• You have to learn to live a “new normal.” It’s a horrific idea that your new normal is a world in which your sibling no longer walks the earth. In your new normal you can no longer pick up the phone and hear their voice or run to them when you’re hurt and scared.
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• People will constantly try to compare what you’re going through with the loss of their parent or grandparent. Their intentions are good and you grit your teeth and try to be polite in response but inside you’re screaming that it’s not the same. It’s not even close to being the same thing.
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• Your life will split into two sections: Before the Death and After the Death. You will become two people in one: the Before you and the After you. You will never again be the same.

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.