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.”