An Open Letter To Those Claiming To Have "Cured" Themselves

We've all found ourselves in disagreements or flat out fights on social media platforms, even those of us who detest such things. We all also know that in arguing the odds of changing the other person's mind are slim to none. However, sometimes a topic arises that you just have to wade into with the tiniest amount of hope that you'll help someone understand why what they're claiming isn't quite true. I have recently found myself in just such a situation.

The idea that one can cure a disease by eating healthy and living a healthy lifestyle has been around forever. I've seen it more times than I can count and while I generally keep my opinion on that to myself I simply can't stand aside anymore and allow people to make these claims. Do I believe that eating healthy and living a healthy lifestyle helps someone with a disease be it Multiple Sclerosis, Parkinson's, ALS, AIDS, cancers, or any of the other numerous diseases attacking people daily? Yes. Notice, however, that I said that it HELPS not that it CURES. To simply throw aside all of our medical advancements and say that they actually do nothing and that it's simply Big Pharma looking to get as much money as possible is, in my opinion, asinine. Is Big Pharma a problem? Yes. Is it the reason people have diseases? No.

I've heard it said that diseases are nothing but a group of symptoms Big Pharma has decided to call a certain name in order to gain vast amounts of money by creating new diseases and then new drugs by which to cure said diseases. I'm not saying that I'm a fan of Big Pharma and that they don't play a role in certain issues but again, it's not the culprit. Yes, diseases are comprised of symptoms. That's how you know which disease you have. It's very simple logic.

When I was about 8 years old, the doctors tried to figure out what was going on with me and although I never tested positive and do not have the antibodies for it now, the decision was that I was suffering from mono at a young age. I wasn't. It was, in fact, the beginning of my journey with Multiple Sclerosis. The problem was that MS was not, at that time, considered a pediatric disease so it was never in the running as a potential possibility. 11 years later I sat in a neurologist's office being told that due to the symptoms I experienced I either had a brain tumor, ALS, or MS. After several studies it was shown that I have MS. I was relieved and grateful to finally have a reason and name for the symptoms I was experiencing all of those years.

In 2014, my oldest sister was diagnosed with the most aggressive almost always fatal form of brain cancer. She had surgery to remove what they could of the tumor. She did not do chemotherapy. She did not do radiation. Neither would have saved her life serving only to make her far more miserable. She was gone in less than 2 months. According to the person I've recently argued with, eating nothing but fruits and vegetables, cures because there's no such thing as disease. I can tell you with absolute certainty that no amount of fruits and veggies would have saved my sister's life. She had a cancer that is almost always deadly. Do the "no such thing as disease" people have an answer when I bring this up? No. They do not. They skip over it or don't respond at all.

I have an immune system defect that keeps my immune system from fighting certain strains of streptococcal bacteria. I've lost my right leg above the knee to it and to date have lost my right ulna to it and may in the long run lose my right arm to it. Again, no amount of fruits and veggies could have saved my leg nor can they save my arm should it come to that. They also cannot save me from sepsis which I've already fought off several times. I am literally missing pieces of my body and pieces of my immune system. Also, the "no such thing of disease" people say if you just relax the body will heal itself without any medical intervention. Not for nothing but my leg isn't going to grow back because I eat nothing but fruits and veggies and exercise daily.

I know far too many people who've battled cancer. Some of them have been taken by it and others are alive and living incredible lives today and each of them treated their cancers with modern medicines. Those who are alive today are alive because of the hellish chemotherapy and radiation treatments they had to endure. Do you think any of them enjoyed it? Hell no but it was the only way they had a chance to save their lives. Children die of cancer. Adults die of cancer. But hey, all they had to do to live and cure themselves was to eat fruits and vegetables. How foolish of them to have not done that and only that.

It really upsets me that people dare claim to have the cure for all diseases. I'm in no way trying to belittle anyone who has improved their health by eating healthy and living healthy lifestyles. I do have a problem with someone who has what is a well documented disease that relapses and remits claiming that they're cured by doing such things. Diseases go into remission and if you're one of the lucky people who has gone into remission no matter what disease you have, I'm incredibly happy for you but to then tell everyone else that they're doing it wrong and they are making themselves sick because they aren't just eating fruits and vegetables and are taking advantage of modern healthcare is just plain wrong. Believe what you choose to believe but don't you dare tell the rest of us that we're sick basically because we want to be sick and are choosing to be sick. Not only is it disgusting and disturbing but it's potentially harmful and could actually potentially be deadly if someone decides they'll take that route to treat a disease believing it will cure them because it "cured" someone else.

Again, I am not trying to belittle people. I'm simply asking that should you be one of those people who claims that they've cured themselves and that diseases aren't real that you stop and think before you spout off about it and that you be wise enough to add the disclaimer to your assertions that your way of doing things may not be effective for everyone.  False hope is a horrible thing especially for those who've just entered the world of disease. Be respectful of those around you and if you do choose to spout this crap make it perfectly clear to those you preach to that you are NOT a medical doctor or nurse or in the medical profession in any way. You're just an every day person who has absolutely no training who is currently lucky. It's hard enough to live with any disease but to have people preaching that you're doing this to yourself only makes it harder and, in my opinion, is cruel.

Thank You Nurses

May 6-12 is apparently Nurse Appreciation Week for 20071, and for someone who loves the written word, it has taken me quite some time to come up with the right words for the nurses in my life and to explain why nurses in general are so important. I have been incredibly unlucky when it has come to my health but I won’t the mega jackpot when it comes to my medical team especially the nurses.

No one WANTS to be recognized by nearly every nurse in a hospital. It’s definitive and loud proof that you’ve been sick far too long and at the hospital far too many times. I used to be terrified of ever having to spend a night in the hospital. Little did I know that I’d spend oh so many nights in the hospital as a young adult. At this point, I’m recognized and fought over as far as who is going to be my nurse in pre-op and while I’m never with it enough to notice, apparently a similar thing happens in the recovery room in regards to me and regardless of who wins the “Meg’s My Patient” lottery, every nurse who knows me and knows I’m there tries to stop and see me. There’s an upside to this. Several years ago I was under the care of Stephanie, a recovery room nurse who I’d known for years, when she knew immediately something was wrong because I wasn’t my normal self at all. She’s the reason my first case of sepsis landed me in the ICU and treated before it could do permanent damage.

Another post-op recovery room nurse, Blaze, was the nurse on duty a day in September after an infection chest port was removed and in pre-op I took a rapid downhill turn. My BP plummeted, my pulse skyrocketed, I was freezing cold with a fever of 106.2, and seizing. He was with me the whole way, rarely ever leaving my side. When talk of the ICU came, I completely lost my mind. I struggle with PTSD resulting from my health especially the ICU both for my own experiences there but because less than a full year prior, I’d been forced to see my oldest sister in ICU after her fatal diagnosis of brain cancer. I started sobbing while my mom filled in the rest of post-op and my doctors and Blaze knelt beside me patiently listening to my fear filled sobs about how I COULD NOT go to the ICU. I just couldn’t do it. In the end I was kept in post-op.

The nurses on the orthopedic floor at my hospital are true heroes. They not only attend to the physical issues but the emotional and mental effects as well. Due to my recurrent infections I’ve been in and out of the hospital since 2004 and have cultivated so many friendships amongst the nursing staff. How many nurses come to your 30^th birthday because they’re so glad that you’ve survived another year – another year they weren’t sure I’d get. How many nurses look into your eyes and see the terror you’re hiding with stupid humor and order pizza to have a party in your hospital room? How many spend money of their own to buy you a bagel on their day off purely out of the goodness in their hearts or buy magazines and goodies just for you? (And by the way…they DO NOT get paid nearly enough.) How many nurses send you birthday and holiday cards? How many nurses recognize how important the memorial bracelet you wear to honor a fallen hero that you don’t want to leave it in the room, and volunteer to wear it for you until you’re back from surgery?

When osteomyelitis (a severe infection of the bone) struck my arm there was one late afternoon turned evening when it was just my older sister and I. It’s incredible how fast a 32 (at the time) year old and 36 year old turn into 12 year olds who just “want their mom” when you want something done and it’s taken forever and you KNOW that if mom was there she’d take charge and get things done because nobody messes with your mom. When she speaks they listen. I was still in shock that I now had osteomyelitis in my arm after a 13-year battle with it and other soft tissues infections in my leg leading to the loss of said leg and I. Was. Pissed about it. At one point my sister noticed a nurse we’ve known since nearly the very beginning and whom I have a genuinely amazing relationship with was in the hall and called her into the room,  A few minutes later she told me she needed food and left the room. She KNEW that I needed to talk to someone I trust outside of the family and someone who has been on this wild ride for years with us, again outside of family, to talk to in that moment and I, the girl who can’t stand letting people see her tears, broke down in tears.

Doctors get all of the recognition but it’s the nurses who make medicine what it is and keeps things rolling as fluidly as possible and take on so much of the grunt work. The emotions they circle through during one shift might take the stuffing out of others. What they go through on a daily basis from unruly patients would often cause so many to walk away.

Without the amazing nurses in my life I have no doubt that one way or another I wouldn’t be here anymore both in their care for my physical issues but their care in my emotional and mental health as well. To all of the nurses who’ve been a part of my life, part of my journey, either at the hospital or through home care I simply cannot tell you enough how much you mean to me and that I do not simply rely on my amazing OR teams when things go south for my health – I rely greatly on you.

How SUPERNATURAL Has Helped Me

I know how cliche it sounds to say that a TV show has helped me through some difficult times and anyone who really knows me knows that I don't like cliches. The truth is, though, that a TV show has helped me through some difficult times. It may not sound like much to the average person and many may be thinking that TV is supposed to help much as a great book does by transporting you to a different place and taking your mind off of whatever is bothering you. It's a release at the end of the day and a way to unwind. You plant yourself on the couch or in your favorite comfy chair perhaps with a snack and you let yourself get lost in a fictional world for an hour or two. That is the whole point to shows that aren't news or true crime related.

I've been in and out of the hospital since 2004 unfortunately achieving a surgical count that is above 60 at this point. This count includes the amputation of my right leg and will continue to rise due to the fact that the osteomyelitis bone infections have spread from my leg to my right arm which has so far cost me my right ulna and may end up costing me far more. I'm lucky enough to have an amazing medical team but though it seems incredibly clear to everyone now that the infection randomly moved from one limb to another that I have some form of immune system defect, we can't treat it. The immune system is so vast and while we know a lot about it, we simply do not know nearly enough. That coupled with the fact that I am allergic to so many antibiotics makes treating me a very difficult thing. However, I digress...

Hospitals are never fun places to be and aside from drug induced sleep, you spend a great deal of your time watching TV. There's this two hour period of time mid-morning where there's nothing on any of the limited channels you have there. It's one talk show or another or one news show or another. This is what I'd come to believe until I took a chance on a show a number of people I know had been talking about or even raving about. That show is Supernatural currently on it's 12th season. During that mid-morning lull when not even reruns of any of the Law & Order spinoffs are airing, Supernatural is. I'd thought it sounded a bit hokey but I eventually took a chance and I got hooked. The only problem was that I'd catch an episode here and there of different seasons. Then something glorious happened, Netflix. I could suddenly start at the very beginning and binge watch my way through 11 seasons which is exactly what I did.

I can't fully explain what it is about this show that appeals to me so much and why I consider it another form of treatment that thankfully, I can not be allergic to. I suppose in part it's due to the fact that at an early age I've had to ponder the subject of my own mortality and I've had to face it many times over the years standing on death's doorstep more times than I care to think about. It tackles the subjects of life and death and heaven and hell and even purgatory in an often comedic way though at times it goes much deeper. It tackles good versus evil and how there's some of each in all of us. There's levity with an Angel of the Lord who doesn't understand simple references and the King of Hell having traded his soul when he was alive for an extra few inches below the belt. There's the ever present notion of family and what it means to be family and backs up something I've always said, that family doesn't have to be blood. Who your family is is based on love, loyalty, trust, being there when the chips are down and everything is on the line. As the character Bobby Singer says, "Family don't end in blood." It tackles the issue of sibling relationships and how one minute you love them and the next you hate them but that you always come back together in the long run and having two older sisters of my own I know how true that is.

The truth, for me, is that unless some random thing like being hit by a bus or I'm in a plane that goes down - infection is going to be what ultimately kills me. It's been trying for years and I've thought many times that I must have the Mark of Cain on my body somewhere because I've cheated death several times. Unfortunately, my oldest sister didn't have the Mark and I'd have given it to her in a heartbeat if I could but cancer came and stole her as it steals so many. I, however, survive that which I shouldn't. Severe sepsis with a 106.2 degree fever should have ended me or at least landed me in the ICU for days if not weeks but instead I was back to normal and home the next day. Yes, it left me with what I refer to as "septic headache days" when there's a constant throbbing in my head that nothing touches and was caused by boiling my brain with that fever. In the long run, though, my body will give in to infection no matter how hard I fight because my body is tired and my well of strength is diminished more and more with each infection and each surgery. As the character Dean Winchester says, "I'll keep fighting. I'll keep swinging until I've got nothing left" which is exactly how I look at my situation.

It's not just the show, though, that has helped and continues to help me through the darker moments of my journey. It's the actual people who make the show what it is. It's the actors who I've watched far too many youtube videos of who are truly good people. It's knowing that behind the characters you see on the screen are real people who know they are lucky to be in the position they are in and use it for good and who truly connect with their fans at conventions. I had a complete geeked out Supernatural fangirl moment when I posted a simple tweet thanking the actors for helping me get through so much and Mark Sheppard who plays Crowley: The King of Hell, liked my tweet. I took a screenshot because I was so geeked out. The actors are constantly reminding their fans that bad times don't last and that there's always hope and promote doing random acts of kindness. I suppose what I'm saying is that the actors behind the characters on the screen aren't egotistical dicks as is unfortunately quite often the case.

Supernatural has allowed me to ponder mortality and the facts of my life with both realness and comedy. Do I believe in vampires, werewolves, possession, and leviathan? Of course not. Am I amused by the episodes full of such things? You bet I am. Do I believe in heaven and hell? Honestly, I tend to believe that we make our own heaven and hell in the here and now in how we live our lives. Is there a real hell with a King? Is there a real heaven with angels and God? I don't know but I'd like to believe that if they do exist, they exist much as they do in the TV show. I'd like to believe that my oldest sister is up in heaven with the likes of Castiel and that when it's my time I'll join her there. Until then, and for as long as I am able, I'll keep on fighting and I'll keep on swinging.

Christmas When A Loved One Dies

My sister, Michaeleh, died on November 2nd 2014. She was 37 and she was my oldest sister. It is due to her dying in November that though she's only been gone for 2 years, this is our third Christmas without her. In my personal opinion, I think it is only natural that the holidays no longer feel the same after a death such as hers in a family. How could they? In our case, a key piece of our family unit is no longer physically with us. What was once a holiday celebrated by a family of five is now celebrated as a family of four. I've been told by others, and have slowly begun to discover for myself that though Christmas will never again be the same, the spirit of the holiday remains and  we slowly begin to create a new "normal" Christmas for ourselves. There are some traditions such as putting up a Christmas tree, that will remain and there will be new traditions created. 

My sister LOVED Christmas. She loved everything about it. She loved picking out a tree, putting it up, and wrapping paper chains around it as well as placing various decorations she'd collected over the years. Michaeleh also loved Christmas music. She'd play it loudly whether she was at her home, in her car, or here at the family house. Personally, Christmas music annoys me after a few days because it's the same songs played over and over by various artists in various forms. However, her love of it and her constantly singing along and dancing to it made the music far less irritating to me. She was just too excited and cute for me to let the music get on my nerves. She loved giving and receiving presents, being together as a family, the general holiday feeling, and was a master at making Christmas cookies. No matter how old she got the magic of Christmas was alive and well within her. She worried that as we got older, Christmas in the Jones house would change but none of us ever expected it to change like it did. 

When we lost her on Nov 2, 2014, we spent that Christmas 5 hours away in NC instead of being at home. We were all equally numb and yet in tremendous pain at the same time. None of us could handle doing Christmas in the room where where my sister took her last breath as it is also the room in which we always put the tree and open gifts on Christmas morning. It didn't feel like Christmas. It also didn't feel like she was truly gone but instead just "away" somewhere. It was almost as if she was simply already married and doing Christmas with her own family even though she was not married nor did she have any children when she died. 

We stayed home for Christmas of 2015 but did very little decorating. We originally bought one of the live trees figuring we could later plant it in the yard. We belatedly realized that those trees can only be indoors for a very limited period of time so we put lights on it and put it on the back porch and got a second tree for inside that could stay up far longer. The only decorations on either tree were lights. None of us felt capable of going through our multiple boxes of decorations especially since a large amount of them are decorations that we either made as kids, were given to one of us from someone, or ones that hold special significance in regards to my sister. We also could not bring ourselves to go through her boxes of decorations. The living tree on the porch was later planted in the yard and has become known simply as "Michaeleh's Tree." Again, it didn't feel like Christmas that year and again it didn't feel like she was gone forever just that she was "away." 

This year we're home for Christmas again and this year is the first time that it feels real that it is actually Christmas and she's not here. Michaeleh died. Glioblastoma (brain cancer) took her from us and due to that there once again will be one less pile of presents under the tree. I hate it when people ask me what I want for Christmas because there's only one thing I want more than anything and it's the one thing no one will ever be able to give - what I want for Christmas is to have my sister back. I have, however, come to realize that the best way to honor her during the holidays is to channel her love of Christmas. She loved and collected nutcrackers so I put them out this year and even bought a new one. We've played some Christmas music and put up the tree though again we only put lights on it still unable to go through the ornaments.

I've been asked multiple times over the last few years what it is that I miss the most about my sister during Christmas. It used to irritate me when people asked because all I could think to say was, "EVERYTHING! I miss everything!" This year for the first time when I was asked I thought more in depth about it. What do I miss about Michaeleh at Christmas? I still miss everything but here's what I miss the most. I miss that she will never again sip her tea on the couch in her pajamas on Christmas morning. I miss that she will never again be giddy with excitement as we start opening gifts. Our gift tradition is that my sisters and I go through our stockings together and then we take turns opening gifts from "Santa." After that, my parents open their gifts and then my sisters and I hand out the gifts we personally bought for each person. I miss that we will never again hear Michaeleh argue that she should be the first to open gifts because she's the oldest and in her personal opinion...it is her right to go first.

To those who have also lost someone they love dearly and find Christmas a very hard time of year, here are some of the things I've slowly been learning since the death of my sister that I hope you'll be able to find helpful in time.

• You are going to find yourself thinking things along the lines of "I wish (loved one) was here to see this" or "man, (loved one) would have loved this."

• You may find yourself feeling guilty for enjoying various moments and for laughing and joking because your loved one isn't here to share in the joy, laughter, and jokes. DON'T! Not only do you have NOTHING to feel guilty about but remember that your loved one wouldn't want you to feel guilty. They'd want you to be as happy as you can be given the circumstances.

• Tears are going to come. You're not always going to know when or why but they will come. Let them.

• Take time to be with your thoughts, some of which will be painful but I promise you that some will make you smile.

• Talk about your loved one. Speak their name. If you have a thought that you think others might also be thinking or a feeling you want to share...speak up and share. Remember past Christmases with your loved ones and share those memories such as "Remember that Christmas when (loved one) did this?"

I was just starting my 30's when my sister died and I never in a million years thought these would be the lessons I'd be forced to learn in life and that I'd be sharing them with others at only 32 years of age. I hope that in sharing, others in similar circumstances find some solace or at least some things to think about.

MERRY CHRISTMAS EVERYONE! 

MAY IT BE FULL OF LAUGHTER AND LIGHT!

Kids Say The Funniest Things

I am an amputee as well as someone living with Multiple Sclerosis. On good days, when my leg remains infection free, I walk with the help of a prosthetic leg and crutch. On bad days, when my leg is bothering me or the MS is, you'll find me getting around either on crutches or in a wheelchair. I know many people who are self conscious about their disabilities but I am definitely NOT one of those people. I choose to not only use it as a learning opportunity for others but I also am a big fan of finding the humor in things.

As a person with disabilities that are visible I often get noticed because it is human nature to notice that which is different. I personally prefer to be noticed by and talk to children and young people than adults. Adults have this notion that they must be politically correct and that somehow it's better to stare and decide my story in their own minds rather than simply ask. Younger people, especially kids, just come right out with whatever questions or comments they have without giving any thought to how it may sound which quite often mortifies their parents but personally, I love it. The following is just a small sampling of the many funny, awesome, interesting, and favorite questions asked or comments made by kids to or about me...

A young boy behind me in line asked a few questions about my leg which I did my best to answer before turning forward again. I heard him sharing the "blanket logic" with his mother a few moments later and at the tail end it dawned on him that he'd JUST been talking to me, the girl with ONE leg so instead of the last word of it being "perfect" this is what I heard..... "Blanket On...too hot! Blanket Off...too cold! One Leg Uncovered...perf...OMG AWKWARDEST AWKWARD EVER!!"

While in the elevator at my sister's condo building I tried not to laugh at the kid who was trying desperately and very sincerely to "find" my leg. He circled me several times, looked in my empty shorts leg, and looked me up and down. As I hopped out of the elevator when it hit my sister's floor he called out, "I don't know how you did it but that is the coolest Halloween costume EVER! You totally win!" 

While at the store one day a little boy walked up to me and said, "My dad says when he takes something of mine away from me it's cuz I have a valuable lesson to learn. You must have had a huge like totally ginormous lesson to learn or they wouldn't have took your leg!"

I also had the awesome opportunity to spend time at the elementary school where my sister teaches talking to various classes about disabilities. I have to give kudos to the classroom teachers who sat at their desks and covered their smiles with their hands and covered their laughter with coughs at some of the things the kids had to say. It was several years ago and yet when I am at the school now or around any of the teachers whose classes I talked to, you'd think I'd been in their rooms just yesterday by the way they laugh at memories of the kids' reactions to me! Here is just a small sampling of some of the things that were said and asked during my time "teaching..."

"Why didn't they just do magic to make it better? Like, you know, doctor magic?" 

"When my grandpa died they burned him up and put him in a box thingy that my uncle has on top of his fireplace. Did they do that to your leg?"

"So you get older but your leg stays 23."

Kid: "OMG! They took your right leg! But that's your kicking leg!" 

Me: "I just have to learn to kick with my left leg." 

Kid: "But everyone knows you kick better with your right leg! That's why it's there!"

"Did they just pop your leg right off? Like kinda how I do with my sister's barbie heads? Like...well like... POP!"

And then there is the very first question I was asked by a child about a week after the amputation of my right leg...

"How come you only got one leg?"

(while I took the question in stride, the kid's mother was absolutely mortified)

Hopefully this post has made you smile if not actually laugh.  

Surviving Survivor's Guilt

Survivor’s guilt or survivor’s syndrome is, by definition, a mental condition that occurs when a person perceives himself or herself to have done something wrong by having survived a traumatic event when others did not. It is a term often heard in reference to the military and combat situations where a fellow soldier came home in a box draped by the American flag while others survived and completed their tour of duty. Holocaust survivors, rescue workers, people who have received transplants and others have all described what we call survivor’s guilt and we all seem to understand that and accept that. The form of survivor’s guilt not often spoken about, however, is the form that develops in those with chronic conditions who have for some reason or another been spared while peers with the same, similar, or various other conditions have died.

I, myself, have been struggling with this particular demon for the last two years. On September 4 2014 my oldest sister was diagnosed with terminal aggressive brain cancer at 37 years of age.  On the evening of November 2 2014, my family surrounded the hospital bed that had been in our living room for the past month. I took my place at the end of that bed and gently laid my hand on my oldest sister’s foot as she took her last breath. When my family was unsure if she'd truly died as she'd begun going through periods where she wouldn't breathe for a long time and then suddenly she would, I moved to feel for a pulse and we knew that her battle against brain cancer was over.

During the almost two months between her diagnosis and her death, I pushed aside my PTSD demons and did anything and everything I could for her and could be heard now and then muttering that it should be me. Since her death, I’ve been heard saying that it should have been me and asking why wasn’t it me more frequently. She was brilliant. She had her MBA and was working on her PhD. She had a life she loved and had made something incredible of herself. I, on the other hand, had been dealt a crappy hand in life from an early age. I was diagnosed with multiple sclerosis and a year later had a simple surgery go very wrong when a life-threatening and life-altering infection took hold of my right leg at the surgical site. Eventually, infection caused the amputation of my right leg above the knee and even that did not end the cycle of infections. Prior to my sister’s death, I’d suffered several arterial hemorrhages and two bouts of sepsis. I’d stood at death’s door only to walk away more times than I care to think about and yet there I was, living while my sister had been handed death in the cruelest way. She was so incredibly smart and she was taken down by brain cancer.

I couldn’t stop thinking that this wasn’t how it was supposed to play out.  I was the Jones sister who was supposed to die. I was the one that death, himself in his sickening ghoulish glory, kept circling. My two older sisters and my parents knew the odds were good that one day I wouldn’t come out of the OR alive. They didn’t think about it but they knew it. In fact, it was my oldest sister who periodically reminded our mother that they might all have to continue their lives without me physically here. I had foolishly gotten myself to believe that if I continued to take all of the serious medical hits that it would spare the rest of my family and Michaeleh’s diagnosis and death was a punch to the gut obliterating those foolish beliefs. My other sister came down on me hard for thinking the way I did and for saying that it was supposed to be me and she and I endured a very rocky relationship for quite some time because of my guilt. I finally talked with a dear friend who had been wounded in Afghanistan about survivor’s guilt and am so thankful that he was willing to go down that rabbit hole with me knowing it may very well screw with his own head.

In August of last year, I suffered my most serious bout with sepsis. I had a temperature of 106.2, which caused seizures and, for lack of a better phrase, boiled my brain which left me with post-septic headaches now and then that absolutely level me. This summer we learned that the bone infection that took my leg had migrated to my right arm. In a few months I will go for yet another surgery or series of surgeries to create a single boned forearm because infection completely ate away my ulna. I'll never have full use of my arm again and God forbid the infection returns I could, in fact, lose it.

November 2 has been a very hard day for all of us since 2014 but for me it brings back the strong emotions that come with survivor’s guilt. I light a candle in memory of my sister, sit in a pew, and think “Why? Why didn’t the universe take me? It should have been me.” The only way that I can find solace is by then reminding myself that this isn’t how my sister would want me to feel and I am reminded of one of the last conversations I’d had with her.

I’d sat by her bed at the hospital and said, “I’m so sorry Michaeleh. It should be me in this bed. It should be me dying. I’m so sorry I can’t save you.” I thought she’d been asleep. She hadn’t eaten all day or opened her eyes even once. When I looked down at her after I’d apologized for something that even as I'd said it was aware that it was beyond my control, her eyes were open looking at me. In short staccato sentences she told me, “Don’t blame yourself. Don’t feel guilty. You’re still here. You have a job to do. This is not your fault.”

I know in my heart that her words were true. I know that it isn’t my fault and that I shouldn’t carry any guilt on my shoulders for continuing to survive that which should have killed me years ago. I do firmly believe as I said at her memorial service, that at least one of the reasons for my own suffering has to be so that I’d be in the unique position to understand my oldest sister and because she knew I understood she talked to me the most. Was that “my job” as she worded it? Do I still have a job to do? I suppose, since I choose to believe in my sister, that I must still have a job to do because I’m still here.

Survivor’s guilt is a painful and truly harsh thing. I can’t make myself not feel it. I can’t pretend it’s not there lurking in the dark corners of my mind. I can’t say that I’m over it. I can, however, acknowledge it just as I acknowledge my other demons and ride it out when it strikes. I can speak up about it using my talents of writing and art. I can then pick myself up off of the floor, dust myself off, and look to the sky and say, “I know, Michaeleh, I know. I’ve got a job to do.”

Three Statements People Make That I Don't Know What To Do With

1.) “I don’t know how you do it. If I were in your shoes I would have never survived it all.”

2.) “I just know I could never make the decision to cut off a part of my body even if I knew it would save my life.”

3.) “I wish I was even half as strong and courageous as you are.”

Those are just three of the phrases I hear quite often in regards to the saga of my right leg; the three that tend to bug me the most. I know that people say such things out of respect and to let me know that they care and appreciate the struggles I’ve had to go through. I am almost always gracious, say a clumsy “thank you” and steer the conversation in another direction for two reasons...

It makes me uncomfortable when people tell me that I am such an inspiration and when things go bad in their lives they think of me and realize they don't have it that bad. As I said, I appreciate such remarks but I NEVER know how to respond and things become awkward.

I am far more than my disabilities, the demons that haunt me, and what I've had to overcome and continue to overcome. I didn't sign on a dotted line anywhere. I didn't volunteer for this battle for my life against recurring infections which has left me with and continues to leave me with more and more seriously nasty demons.

I’ve tried the “you’re selling yourself short” route but it only drags the topic out more with people adamantly telling me that they know themselves and know that they could never survive what I’ve survived. The reality is, though, that many ARE selling themselves short. Yes,  there are those who truly couldn't handle it. I knew a man who'd lost a leg and struggled a lot with it mentally and emotionally with repeat surgeries and in the end he tragically took his own life. You can believe the "22 veterans a day die from suicide" statistic or not, but regardless of the actual number far too many ARE taking their own lives unable to conquer their demons.

Never in a million years did I think I would have the health issues that I have and if you’d asked me years ago if I thought I was strong enough to make it through my current situations I would have adamantly told you that there’s no way I’m a strong enough person. Yet, here I am. Doing what I believed was not in me to do. Every day people greatly underestimate themselves which is a shame.

I appreciate people telling me that I inspire them or that they see me as a hero of some kind because I do believe that they are being sincere and I also believe that each person’s trials and tribulations are meant to inspire others around them. If by sharing my experiences, it can help someone else then I will by all means share. Some in the amputee community tend to really hate it when someone dares to stare or walk up to them to ask a question. I simply see it as humans being human. We're all curious about that which makes someone different and whether we're honest enough to admit it or not, we all take notice of things that are blatantly different about others we pass as we go about our business. I don’t shy away from the questions and I don’t shy away from the stares.

 There are certainly times when I get annoyed by it and my quick wit kicks in and my replies to questions are snarky or I make up a story just to see what the other person(s) will say or do. However, on the whole I believe I’ve gone through so much for a reason and that part of the reason is to help others realize that there is a strength inside all of us waiting to be tapped. You can have some of the worst things in life happen to you but you don’t have to fall to them. They don’t have to beat you down and steal who you are, your soul, your mind.

I do find it interesting, however, how people I don’t know or people I’ve only just met minutes before can look me straight in the eye and tell me that I am their hero. Really? How can that be? We’ve only just met. I don’t even know your last name or where you’re from. You’ve heard the Cliff’s Notes version of my story either directly from me or from a mutual friend and I’m suddenly lifted to hero status. That just boggles my mind. I've said it before and I'll continue to say it…I'm no hero. I'm just a survivor.

I don’t like being put on a pedestal. I’m uncomfortable with that especially when I’ve been placed there by someone that doesn’t know me. Knowing my story and knowing me are two different things. Personally, I don’t think I deserve to be placed on any pedestals. I’m just an average person who has made the best out of some bad situations and I feel confident in saying that if the tables were turned and bad situations came your way you’d make the best out of them too. I’m truly no better than anyone else and am no different than any other Tom, Dick or Harry. The only difference between me and anyone else is that I have Multiple Sclerosis and am an amputee battling recurrent life-threatening infections. Those are the things that make me different but if you stop and look around you’ll see that in more ways, far so many more ways, I’m the same as everyone else. I'm the same as you.

So please, there are two things that I would like you to take away from this post and practice in your own lives…

The next time you are in search of inspiration I beg you to first look inside of yourself before looking to anyone else. I will lend you my strength if you truly are in need of it but I think that if you look inside of yourself you’ll be surprised by the fact that you really don’t need to borrow any strength from me.

The next time you decide to put someone on a pedestal, please put them there based on more than just surviving infections, surviving an arterial hemorrhage, surviving amputation. Base it on who they are, what they do, their intelligence, their creativity, their attempts to better the world we live in, and their dedication to their passions. Those people, to me, are the true heroes of the world. Me, I’m just an average person who believes in herself.