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. 

Our "Go To People"

Our friends are the people we turn to most often when it comes to talking about the tougher things in our lives but not all friendships are created equal. Some of our friends are people we know we can always count on to have a good time with but can’t quite handle it when discussions turn serious. These friends are more like acquaintances with which we share the benign things about our lives and never delve deeper. There is nothing wrong with these kinds of friendships and we all need them in our lives.

Every now and then, however, we meet people with whom we forge incredible friendships where we not only are able to have fun with each other but also comfortably delve into the hard things in life. It is with these people that we are able to let down our guards and allow our personal demons to be seen. These are the people who you can call at 3am in tears or just show up at their door and know that you’ll be welcome. These are the people you think of first when tragedy strikes and you need someone. These are our “go to people.”

People are constantly asking me how I manage to stay strong despite everything that has happened and is happening. They marvel at my ability to not simply crawl into some dark hole somewhere and wallow. It’s not that I am stronger than they are. I manage to stay afloat in this churning hellish sea I’ve been set adrift in because of my friends, especially those select few who are willing to go down the rabbit hole with me when I need them to.

The death of my oldest sister to brain cancer devastated me. She was my hero and my rock and she’d been taken so fast and in such an ugly way. I’ve been sick for a long time. I was 8 or 9 when the symptoms of Multiple Sclerosis first reared their ugly heads and then in 2004 I had a routine surgery that caused a massive infection that nearly killed me and set off a series of recurrent infections that ultimately cost me my leg above the knee and continue to this day. I’ve stood at death’s door and looked the reaper in the eye more times than I care to think about or count and yet I continued to beat the odds and survive when I shouldn’t have. My sister was an amazing woman with a great life, amazingly fast wit, and incredible intelligence. She was working on her PhD when brain cancer struck and gone less than 2 full months after being diagnosed.

My emotions were all over the place and I just kept thinking and occasionally saying “it should have been me.” It took me some time to put my finger on it but what I was dealing with and being overwhelmed by was survivor’s guilt. Why was the sister who had everything going for her dead while the sister who’d been struggling to stay alive for years still living? Eventually I reached out to the one friend I knew could understand. I asked him if I could email him a personal question and warned him that it might be a topic that triggered him and if that was the case that we’d forget I’d ever asked. He responded by telling me to send him the email and after reading it was willing to venture into that awful rabbit hole with me. He didn’t have to do that but he did. He listened, revisited his own survivor’s guilt demons, and offered some advice. He helped me tremendously then and has continued to both by actions like that and by being someone to comfortably chill with and laugh with.

At the end of last year I was in a pretty bad place. I’d hit rock bottom. Someone I trusted broke my trust at the same time I was being overwhelmed by the emotions surrounding the first anniversary of my oldest sister’s death. I reached out to a dear friend who I call my sister and told her that I was in a bad way. I really needed to get away somewhere safe for a while and she did not hesitate to tell me to come spend time with her and her family. It did me a world of good as it always does and as always we laughed and joked a lot but we also had heart to heart talks about things we didn’t share with other friends; things we were only truly comfortable talking about with each other. 

A final example is my sister-in-law and, of course, my brother. First, my sister-in-law and I spent countless hours on Skype laughing and teasing each other and then discussing sensitive and darker subjects. She has been through a lot as well and some of our traumas are very similar but even the ones I've never had to deal with or vice versa are covered openly and comfortably with each other. When she called me in the middle of the night I immediately answered. She, my brother, and I have also spent countless hours sitting on their couch talking about the good, the bad, and the ugly while my niece is either nursing, playing, or sleeping. We talk about my sister as though she's still here and they believe she's one of my nieces guardian angels as do I. We talk about everything and nothing is ever a taboo subject and it never gets weird.

These are just three examples of what I mean when I call someone a “go to person.” They are the friends you know you can count on to have great fun with but also great deep conversations with. These are the friends who know you best because of your ability to share, not just the good but the bad as well. There are very few people I will force myself awake for in the middle of the night should they call me, but my "go to people" like the three I've mentioned all know that should they need me at any time, day or night regardless of what may be going on in my own life at the time, I will answer if they call. I know they'd do the same.

I am so grateful for the “go to people” in my life. I would never survive the hell I’ve had to go through without them. The Beatles were right when they sang, “I get by with a little help from my friends.” Friendships you can count on are priceless and some of the most important relationships you’ll ever have.

To the two friends I wrote of and to the several others in my life, I can not thank you enough for all you’ve done and continue to do though I know you’ll say there’s no need to thank you at all. I know how truly blessed I am to have “go to people.” Even the strongest amongst us need those kinds of relationships. No one survives in this world alone especially when it comes to surviving the most unthinkable and hardest times.

What Do You Need? What Do You Say?

I was having a difficult time coming up with how to write this post. It’s certainly not an easy one. I was then reminded of the words of an old Reba song, “What do you say in a moment like this? When you can’t find the words to tell it like it is. Just close your eyes and let your heart lead the way.”

I was once again recently reminded of a question that a woman I knew uses when she knows that someone she cares about is having a hard time. Her goal is to help instead of adding to the stress the person is already feeling. She doesn’t get in your face. She doesn’t bombard you with questions. She doesn’t ask if she can get you this or get you that. She doesn’t rattle off a list of things that she can do for you. She doesn’t assume.

She simply asks… What Do You Need?

This woman is no longer a part of my life but the lessons learned from her remain. The biggest of all is that one simple question. When she first asked me the question I stared at her unsure of what to say mostly because I’d never had that asked of me before. She barely knew me. Our paths had only crossed because of her friendship with my oldest sister. Still, she saw me struggling after my sister's death and she asked me what it was I needed, not what I wanted...what I needed.

I spent the first week of February in the hospital with yet another infection in my nub. It began as it always begins with an abscess forming deep within which was opened and allowed to drain. Unfortunately, it didn’t end there. I began to feel sick and having spent the past 12 years in this battle against infection I knew exactly what it meant. I was in need of IV antibiotics and a hospital. I spoke with my infectious disease doctor and my family and we all agreed that admitting me to the hospital was the best course of action.

I have a serious problem with IVs. I’ve spent 12 years having my veins stuck every time I turn around and having really potent medication pumped through them and throughout my body. My veins no longer accept this. You can almost hear them scream “SAVE YOURSELVES RUN FOR YOUR LIVES” when someone tries to insert a needle. A basic IV will usually, if I’m lucky, hold for about a day at the most before it fails. I’ve had 3 different ports put in my chest for IV access, which unfortunately have also become infected and were removed. The last one sent me into septic shock with a temperature of 106.2. I’ve had more PICC lines inserted into my arms than I can count and each one leaves behind scarring when it’s removed making the odds of ever getting another in place very low and the last two became infected as well.

I spent the first week of February battling IVs and midlines and sepsis and PTSD before completely breaking down and finally being discharged. We weren't sure I'd last the week. I did. I'm stubborn. There is nothing more that can be done for me at this point. The only option left would be to allow them to take the rest of my leg, which I have steadfastly refused and will never allow. It wouldn’t save me and instead put me through months of pain and misery for no real gain.

I have fought hard for 12 years. I have fought for myself and I have fought for my family and for my friends. I have a lot to live for. I have a beautiful little niece just starting out in this world. I have a toddler in my life that I adore and spend quite a bit of time with. I have both of my parents, my sisters and brothers (biological and non-biological), aunts, uncles and cousins. I have goals and dreams and wishes.

The loss of my oldest sister in 2014 complicated matters in my mind because the very idea of leaving my parents with two dead children and my sister with two dead siblings makes me physically sick. However, I know I need to stop and think of this in regards to myself and had my sister not died what decisions would I have made? Would they be the same decisions? The answer is yes. My sister’s death does not negate my feelings about letting them take the rest of my leg nor does it negate the fact that this is happening whether I want it to or not.

The thing I hate the most besides the idea of leaving my family to deal with the hell that is sure to come when my time on earth ends, is that there’s no timetable. There is no “you have 2 -6 months” or “you have 1 year.” I may very well go through several more abscesses that can be drained in an exam room before ever getting septic again or the next infection could be the last. No one knows and no one has ever known. All that is known is that there’s nothing more to be done and that I cannot continue like this.

I was dealt a horrible hand in the game of life these past 12 years and I’ve played them as well as I could. I once asked my former surgeon who once said that I do not possess a “quit gene” meaning I simply don’t know how to quit, what happens when the kid who never quits can’t do it anymore and how does that kid know she’s reached that point? His response was that I’d know in my body, heart and mind. I’ve always followed my gut and it has never steered me wrong and I, of all people, would just know.

And I do.

So why did I start this out with the basic story behind the question “what do you need?” Why did I bring that up once more and in yet another post? That’s the question I want to be asked and for the answers, when asked, to be accepted. What I need right now is for those who have supported me through all of this to continue doing just that and treating me the same way they always have.  Yes, things change with news like this and I don’t expect them not to. I simply ask that you realize that I’m still me. I’m still the same wise cracking, stubborn, goofy, black and gold bleeding Pittsburgh jagoff with a twisted sense of humor that I’ve always been. What I need is for my decisions to be respected whether you agree with them or not.

I also need to ask one favor. Please make sure the people you care about know that you care about them and know that you love them. Don’t get caught up in stupid petty arguments and don’t put off for tomorrow what needs to be done today because no one knows when tomorrow isn’t going to come.

Remembering the Holocaust

Today is the international day of remembrance of the Holocaust. Though some have tried to claim that it never took place, we MUST NOT ever forget the very sickeningly real genocide that resulted in the death of an estimated 6 million Jews. It was on January 27th of 1945 that the Soviet forces liberated the most notorious of all concentration camps, Auschwitz-Birkenau, which has become the symbol of the Holocaust representing the deep depths of man's own inhumanity toward other men. 

I had the honor of meeting a Holocaust survivor many years ago. I was outside waiting and watched a group of obnoxious teenagers with that unmistakeable "We are the shit!" attitude walk over to the bench where an old woman sat and start hassling her. I would have intervened regardless but I happened to notice that on this old woman's arm was a crude tattoo of numbers. I went over to the group and said they might want to think twice about causing problems especially with this woman. My remark was met with snickers and a huge amount of attitude when they asked what a one legged gi,p was going to do about it. My response to them was simple. I told them that while this one legged gimp could easily kick their asses, it wasn't me they should be concerned with. Again, they snickered this time at the thought of such an old woman being in any way threatening. When the loudmouth of the group laughed and asked if I was talking about "grandma here" I said that I was talking about her. 

I moved ever so slightly closer to the loud mouthed jerk and asked if he'd seen the old woman's arm. He looked at me like I'd grown a second head and then once again laughed saying that if I was thinking that she'd beat him at an arm wrestling contest I was insane. I simply smiled at him for a moment before very quietly saying, "Son. You see that numbered tattoo on her arm? That's no gang sign. That's no set of lucky numbers. That's no random drunken night mistake."

That kid continued to stare at me as I went in for the final blow. "Let's see if you know your basic history. Do you have any idea where she got that tattoo?"

He continued to look at me oddly but his eyes grew quite large when I asked if the name Hitler rang any bells. I watched this young punk lose his control over the tough guy persona he was used to wearing as he first stared at me and the. At the old woman on the bench. I watched his eyes take in her tattoo with horrifying recognition. I then watched him apologize to her for his comments and behavior and the confused look on the faces of more than one of his friends who obviously was just as stupid as they looked while recognition of what I'd said and what it meant finally washed over another young man. The two who understood the significance of what I'd just said and who they were in the presence of quickly apologized for their mistreatment of that old woman and herded their dumber friends quickly away.

That old woman reached out a hand and asked me to please sit and I did. She was surprised that I'd even seen the tattoo, that I knew what it was, and that I'd stepped in on her behalf to teach a few obnoxious kids a quick lesson. I offered her my apologies for "going there" without warning knowing that many of the few survivors left don't like their tattoos showing and don't like to talk about it. I started to ramble that if it had caused her pain or sorrow that I was truly sorry because I know too well the horrors of Post Traumatic Shock and reliving horrifying events as though they had taken place yesterday because someone had said just the right thing to trigger it. She took my hand in hers and with tears in her eyes, she thanked me for doing exactly what I'd done and for noticing and remembering. She told me briefly about being a Jew in Nazi Germany, about the cramped railway cars, about being split up from her father and brothers, about the harsh disturbing realities of life in a concentration camp, and about never seeing her father or brothers again. I've had a number of meaningful conversations over the years but this conversation holds the top space alongside the final two way conversation I had with my older sister before she passed.

The survivors of this horrific event in human history when some of humanity showed just how evil it can be while others showed how resilient a person can be, are dying out. Soon there will be no more survivors. It is our duty to not only honor them and respect them but also to never forget them and what an estimated 6 million people didn't survive.

To anyone who still believes that the Holocaust did not take place...meet one of the few remaining survivors. Listen to their stories. Visit the Holocaust museum in Washingon DC. The Holocaust was very real, my friends. They say that if one does not learn from the past that they are destined to repeat it and we, as a whole, are proving that statement true. Genocides on smaller scales are continuing to happy around the world to this very day.