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.

To Those Who Wear The Badge

The other day I went to an appointment wearing a shirt that reads "Blue Lives Matter." I was walking on the sidewalk minding my own business when I heard a car door slam and a voice call out "Excuse me Miss!" I turned around to find a police officer with his hand held out to me. I must have had an quizzical look on my face because he pointed to my shirt, reached out his hand to me again, and said, "I saw you and I saw your shirt and I just wanted to thank you for backing my brothers and sisters in blue."

I shook his hand and explained that I have always and will always back the blue because I know the sacrifices that they make and the dangers that they face every single day on the job. I even told him that I had been pulled over for excessive speed a month or two prior and as the officer handed me my warning I not only promised to drive slower but leaned out my window as he walked away and thanked him for what he does for our community. It wasn't because he let me go with a warning when I truly deserved a ticket. It wasn't because he was fascinated by the left foot accelerator I use to drive as a right above knee amputee and the conversation we had about it and about how I became an amputee. I thanked him because he deserved to be thanked and because this was one instance where he pulled someone over and wasn't in danger when so many times it goes the other way.

Law Enforcement Officers (LEOs) are forced to make split second decisions constantly to protect and serve their community. Later, those decisions are often criticized by those who weren't there, the media, people hiding behind their keyboards on social media sites, and those who THINK they know what happened because someone happened to catch PART of the scenario on their cell phone. These brave men and women know that these things will happen and still they put on their uniforms and they walk the beat to do a job most aren't brave enough to do in order to serve and protect citizens they've never even met before.

In this world of technology that we live in where it's rare to find a person who doesn't have a camera phone, we're seeing more and more grainy and bouncy video of arrests and shootings. Here's the thing, though. You and I will never know what happened before the record button was pushed or what happened after the recording stopped. We will only ever know what we see and the truth is that our eyes can and do deceive us and video is incredibly deceptive. All we often see is that an officer shot someone or taser'd them. We don't often see or hear what was done or said prior or after.

Are there bad officers out there who are racists? Yes. Are there bad officers walking the beat every day who are jaded and angry? Yes. Are there bad officers out there who have done and seen too much and now simply shoot first and ask later? Yes. Just as with any profession, there are bad apples. There are men and women who shouldn't be allowed to wear the badge but they are not the majority and police departments do their very best to weed them out.

If you want to sit back behind your keyboard and judge the actions of the police you are free to do so in this country. However, most who do exactly that are the people who would never in a million years even consider putting on the badge. They are the people sitting at home or in a job where danger isn't something they have to face other than the unfortunate instances of a workplace shooting where a coworker goes postal. In those instances, though, guess who the social media keyboard judges are calling for and thankful to in the end? The Police. The same men and women that they bash due to a viral video circulating the internet.

I happen to know some people who either are currently on the job or were and I happen to also know family members of officers. We ask a lot of our officers and their families for far too little pay. Yet, this is the life they have chosen; a life in service to others - to people they do not know.

To those who wear the badge…I see you. I appreciate you. I support you. I am thankful that you are willing to do what I and most others can't. I know the dangers you face and that your families worry. I know that a good day for you is any day that no one you know has been hurt and you come home at the end of your shift to hug your families. I know you feel the pain deep in your chest when any brother or sister in blue, even if you've never met them, is injured or killed on the job. I know you risk your life for me every single day and I will forever support you and love you for it.

Fighting Alongside My Cousin's Wife

Everyone who knows me knows my personal health story of battling Multiple Sclerosis since the age of 8 or 9 and finally being diagnosed in 2003 only to then have a routine knee surgery in 2004 go horribly wrong resulting in continuous severe infections. The infections ultimately led to the amputation of my leg above the knee, over 50 surgeries, severe arterial hemorrhages, several bouts of sepsis, and finally reaching the point where there is nothing more doctors can do to save me from these vicious infections. Those who know me also know I am not a religious person and have had many crises of faith and HATE religious platitudes about letting go and letting God or if God brings you to it He'll bring you through it. I almost never ask for anything on my own behalf. I share my story but not in the hopes of gaining prayers, good vibes, or pity but because if I can help even one other person then this was all for something.

Today, however, I come to you with a request for just that…prayers, good vibes, and best wishes as well as one other favor which I will get to in a moment. First, let me explain why I'm writing this post. I will try to keep it as short and simple as I can so bear with me for a moment.

In 2013 my cousin's wife, Shannon Romanchuk Saturno, was diagnosed with breast cancer at 29 while 26 weeks pregnant with their first and only child. Siena Hope was miraculously born happy and healthy while Shannon continued her fight against cancer. Shannon finished chemotherapy and seemed to be on the road to recovery but in 2014 a routine test showed a small amount of cancer on a lymph node which meant further treatment. Scans now show that the cancer has metastasized to her liver, lung, femur, brain, adrenal gland and spine. She spent over a week in the ICU enduring strokes, seizures and other problems associated mostly with the tumors in her brain. She is now under the care of hospice in Huntington, Long Island.

All of this has struck me very hard not only because Shannon is essentially my cousin but because in 2014 my own oldest sister was diagnosed with glioblastoma multiforme which is a highly aggressive brain cancer. She too endured strokes and seizures and spent about a week in ICU before being brought home for hospice care. She passed away in our house not even a full two months after her diagnosis. I have a nearly photographic memory which is a large part of why I suffer from PTSD from my own health problems but it also means that with each update on Shannon I am transported to the videos and pictures stored in my memory of my sister's battle. I understand what Shannon, her family, and mine is going through on a level many can't.

Shannon has vowed to keep fighting for as long as she is able to as the cancer ravages her and her loved ones watch face the reality and horrors of this incurable monster of a disease. Several months ago I had a conversation with her in which I made sure she understood the difference between giving up and letting go because I had to learn that lesson with my sister who I was originally angry with for what I thought was giving up but came to understand wasn't giving up but instead, letting go. There is no shame in letting go when the time comes which I understood for my sister, understand for Shannon, and understand for myself in my situation.

Shannon is a 32 year old wife, mother, daughter, sister, friend, cousin, and warrior. She deserves a final wish which brings me to the favor I started this post for. Shannon is a huge Yankees fan and huge Derek Jeter fan. It has come to my attention that people have been making requests on her behalf to have Derek Jeter visit her while she can still enjoy it. 

I do not know anyone connected to the Yankees or Jeter himself, personally, but I'm hoping that someone will read this who DOES have those connections and will help us help Shannon get her wish. Please, if you think there is any way that you can help make this come true get in touch with me or if you know her family, get in touch with them.

People have asked me over the years what wish I'd like and if there's anything they can do for me as I fight for my life. I honestly have never come up with an answer for them other than that obviously it would be amazing to meet Ellen DeGeneres or Robert Downey Jr but I can settle for dreams of those things. I'd love, however, to help make this wish of Shannon's happen and not just be a dream.

The Transgender Bathroom Issue

I respect the fact that everyone has the right to their own opinion whether you agree with mine or not so long as you can be civil about it. That being said, I know that what I’m about to say may piss people off and it may cost me relationships with people I know and other readers but I feel the need to share my thoughts on this controversial subject.

I am not transgender. I am a woman and I know that not because of the sexual organs I was born with but because I know myself and I am comfortable in the body in which I was born.

I do, however, I fully support transgendered individuals and know several. I am an ally. I always will be.

Out of nowhere, thanks to laws and proposed laws, we as a society are in a massive uproar over “the bathroom issue.” The thing is, though, that this isn’t about bathrooms just as it wasn’t about water fountains and bathrooms and bus seats during the era of Civil Rights for blacks.  This is about hatred. This is about being afraid of that which is different and that which we do not personally understand.

You have no idea how many times you’ve used a public bathroom and peed, pooped, and washed your hands next to a transgendered individual. It happens and has been happening daily and until recently, no one thought twice about it.

The Bathroom Issue seems to be based on this assumption:
Someone who is a heterosexual male could walk into any public restroom dressed as a woman and assault a woman or child.

Say ANYONE walked into a restroom, walked into a stall, stood on the toilet and peered over the wall of the stall next to them don’t you think that would set off alarm bells regardless of what said person was wearing?  Obviously, if I saw a man doing that my pervert alarm would start screaming but I also know it would start screaming if I saw a woman doing that too. No one, regardless of their sex, should be peering over stall walls and the truth is that the kind of people who WOULD do that would do it anyway. Pedophiles and rapists are going to attempt to do what they want to do regardless of the laws. 

If you want a truly sobering truth try this on for size:
Statistically, at some point in our lives most of us have very likely been in a public restroom peeing, pooping, and washing our hands next to a pedophile or rapist. We already know that a lot of Catholics have likely sat in mass led by a pedophile.

As I stated previously, this isn’t about bathrooms. This is about fearing that which we do not understand and that which is different. How many of us truly have any real knowledge of what transgendered is or what it is like to be transgendered other than the “supposed facts” we read on the Internet?

Yes, the visibility of the transgender community is growing but these people (and that is exactly what they are – PEOPLE like you and I) face discrimination at every turn in their personal lives and their work lives. For many, one of the biggest fears is the public restroom and what might happen to them if the bigots of the world discover they are transgendered.

Did you know that most transgendered people have been bullied? Did you know that many have been sexually assaulted? Did you know that they are at a very high risk of suicide attempts and successfully committing suicide? They are told so often that who they are makes them less than human, unnatural, freakish, and deviant simply because their gender identity doesn’t match the body they were born into.

I may not be 100% correct in everything I say and I’m sure people will take issue with what I’ve said on both ends of the argument. All I can say is that I’ve seen sexual abuse and therefor rightfully have fears and am overprotective of little girls in my life and while I understand the concerns – I have no fear or anxiety about using the bathroom with transgendered people. In knowing several transgendered people, there is nothing wrong or monstrous about it. They are not the scary things that go bump in the night and they are not looking to rape and violate women and children. They didn't ask to be born this way with the burden of knowing their bodies don't match who they truly are and they didn't ask for the fear and discrimination. They are simply looking to be accepted and we as a society need to pull up our big boy and big girl panties and give them that.

Below is artwork I did based off of a picture I feel speaks volumes of a friend's brother who is transgendered. This is Oliver. This is him becoming the man he was always meant to be. This is being true to himself. This is is transgender. 

Thoughts on Cures

A friend of mine who also has Multiple Sclerosis shared a conversation with me that he'd had with another person living with a different disability. During the conversation he asked her that if a cure for her disease was discovered, would she want to take that step. Would she want to be cured? Her answer to the question was no. She cited several reasons including that she feels that her friendships would change, her dedication would change, her self out-look would change, her life's purpose would change, her self-esteem would change and that the way others would view her would change if she no longer had her disability. When he finished explaining her reaction to his question he asked me what my thoughts were both on curing my MS and if I were able to get a new flesh and bone leg. 

I do not agree with the person my friend was talking about. In fact, I very strongly disagree with the majority of her assessment of what would happen if they could cure her disease or any disease for that matter. I’m not a big believer in regret and try to live my life without regret. Whether a person is ill or not, it is the events in our pasts, good and bad alike, that make us the people we are today. It's not our illnesses or disabilities.

I am who I am and where I am at this stage in my life because of what I’ve had to go through in regards to having both a chronic, progressive, debilitating neurological disease and having had to fight for my life repeatedly against infections in my leg which ultimately led to amputation. People think I’m crazy when I say that in many ways I am grateful for these struggles. Do I wish that it were possible to go back in time and erase whatever it is that caused me to develop MS in the first place? Of course I do. I would seize the opportunity to be cured in a heartbeat. Do I wish I could go back in time and erase whatever it is that caused me to be so susceptible to serious infections in my leg? Yes, of course. However, I can’t go back and erase those things. The only thing I can do is continue moving forward, learn from my experiences and hope that a cure for Multiple Sclerosis comes soon and when it does, I will seize the opportunity. I don’t believe that being cured of a disease negates what a person has gone through because of that disease in any way.

The life lessons that I have learned over the years are in large part due to my medical history. I have learned so much about myself, about the people in my life, about what’s important and what’s not important, and what an incredibly precious gift life is. I truly believe that the way I view the world around me wouldn’t drastically change if I no longer had Multiple Sclerosis and I don’t think that my friendships would radically change either. I would still see the world through the eyes of someone who unfortunately was dealt some very hard hands in this game we call life, someone who has had to make some very tough calls, and someone who has been given the gift of fully realizing just how precious every hour of every day really is. When it comes to friendships the same rules apply to those who have never battled serious illness and those who have. If someone walks away instead of standing beside you when you need them, they were never really a friend to begin with.

I think that I’ve made it clear that I would, without a doubt, seize the opportunity to live a life without Multiple Sclerosis but I seem to have to skipped over the question of whether or not I would seize the opportunity to live a life with two flesh and bone legs again. The reason for this is simple. We do not know why infection has seized control of my right leg so there'd be no guarantee that if I were to be given a new flesh and bone leg that this same cycle of hell I'm living in now wouldn't start all over again. That is a hell I simply could not live through from the beginning again. Also it would have to be some kind of transplant and not only are we not medically there yet to make that leap and make it work, any recipients would have to be on rejection medications for the remainder of their lives and the risk of infection even with a good immune system is still there. My personal risk of infection is just far too high. There is a defect in my immune system somewhere and without fixing that, which can't be done currently, my infection problem would remain. Comparing MS to being an amputee is like comparing apples and oranges. Life as an amputee can return to an incredibly normal state with the right treatment. The same can not be said for MS.

I think that one of the biggest differences between me and the person that my friend was talking to is that I don’t view myself or identify myself as an amputee and person living with Multiple Sclerosis. Neither one of those things define me as a person. They never have and they never will. They are simply two small parts of the whole. I am far more than a person living with disabilities. I’m a writer, a photographer, an artist, a daughter, a sister, a friend, a neighbor and so much more. Those are the things that define me the most. When my friends and my family look at me those are the things they see, not a person with disabilities. They see me for who I am and they treat me as such and that is the way I want it.

I do not know the person my friend had this conversation with but I suspect that disability plays a big role in her life. I suspect that it plays a far bigger role in defining who she is than mine do in defining who I am. I suspect that if she were cured she is one of those people who simply would no longer know what to do with herself. I could be way off target. I only reach these conclusions because of the way she answered the question. If she thinks her friendships would change it makes me think that the majority of her friendships are based on disability. If she thinks her self out-look would change it makes me think that her disability is in a very big way, how she defines herself.

We are all different which is what makes humanity so interesting. There is no right way and no wrong way to be when living with a disease. Everyone reacts differently and everyone is allowed to tackle it in whichever way is best for them. My way doesn’t make me any better than people who choose to tackle it the way she has and her way doesn’t make her any better than the people who choose to tackle it the way that I do. Each of us has the free will to choose how we play the hands we are dealt in life. We can choose to fold or we can choose to stay in the game. In my eyes, saying no to a cure for any disease is folding and foolish and though I respect the right of this girl and others like her to reject a cure, I will never understand it. Personally, my door will always be open wide for the cure for Multiple Sclerosis and of course for the infections that without a lasting cure will end my life.