Monthly Archives: August 2017

Relative

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I hate it when people say to me that they feel bad complaining about things to me because “I deal with so much”. On the one hand it is kind of sweet of them to say that, but on the other hand, I’m still a human being and friend, and my problems don’t preclude me from being able to listen to others and offer my advice.

The truth of the matter is that everything, EVERYTHING is relative. I understand that on the surface people might think that their issues are unimportant but, as I always say, the only person you can compare yourself to is you. And that goes for every aspect of life. When one of my MS friends tells me that her knee actually started bending (after lots of hard work) when it hadn’t bent like that in years, I get so excited because relative to her past, it is huge. She may as well have run a marathon, as far as I’m concerned. I never compare anyone to me, nor do I compare myself to others. It’s all about personal progress, and the same goes for personal hardships.

I realize I have had my share of personal hardships, but I don’t look at things that way. I am of the mindset that my lot in life is exactly that: mine. It’s unfair to compare myself to anyone else, and if I did I would be a completely different person than I am today.

The fact of the matter is that I don’t look at other people and compare them to me, questioning why I have been dealt the hand I have while others have a seemingly “better” hand. Problems are problems, and like assholes, we all have them. Mine are no more important than anyone else’s, and in fact I’d venture to say that mine are easier because I’ve had to deal with so many through the years, and I have gotten pretty good at handling them in my usual glass-half-full way.

So it’s not like I’m saying I want more obstacles to overcome, but I never thought I’d appreciate them the way I do, because each one makes me a better version of me. The strength I’ve derived from all I’ve been through makes me a kinder, more sensitive, more understanding human being, and overcoming the bumps along the way is perhaps the most empowering feeling I have ever had.

The challenging parts of life are not easy, but the way we respond to them molds us into who we are. It’s unfortunate that so many people can’t see the beauty that awaits when you overcome those difficult times because it is powerful and we all deserve to experience that feeling. Plus giving up, for me, is simply not an option. We get to choose our fate (in a way) by how we handle our life circumstances. Why would anyone not choose empowerment over the alternative?

Lucky to have this guy who supports me through it all, which makes everything just a little easier.

Disability

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I hate it when people get the wrong idea about people on disability. I mean, I know there are dishonest people in the world who try to take advantage of social programs, but my friends and I do not fall into that category.

As a teacher, I was considered a state worker, and therefore not eligible for state-funded disability programs. I have no idea why, and it makes absolutely no sense to me at all. I contributed to it through my paycheck yet I could not collect from that fund. Instead, I could only collect disability through a private insurance company, with premiums (that increased every single year and even doubled when I turned 40 years old) deducted from my paycheck. There is nothing like working your tail off and bringing home less money year after year despite being at the top of the salary guide, with a Masters Degree, and longevity in the district.

As much as I cursed it every time I saw my paycheck, I was grateful for it because although it was not the same as my paycheck, it would allow me to at least pay my bills if ever I found myself unable to work, and that was the thought that I carried with me to justify it. But the first time I needed it, I called to report my disability, and was appalled to say the least. I explained to the desk monkey (sorry if this offends anyone but what follows will make you feel the same way I’m sure) that I was having an MS exacerbation. The questions that followed: How long will you be out? Are you having surgery? Did you have a baby? How can you not know how long you are going to be out? My answer: Ummmmm because I have Multiple Sclerosis. Clearly there was nothing in the list of scripted maladies that the desk monkey could equate my situation with, and he knew nothing (and I mean absolutely nothing) about MS. Not feeling well and talking to a bunch of idiots is not an easy thing to do while trying to maintain my composure. I ended up staying on disability for the first half of the school year, and I even self-paid the premiums while I was not collecting a paycheck.

Seriously. Handwriting all this with a tremor is stressful and overwhelming, to say the least.

Yet I still couldn’t complain because as much work as it was for me to get these people to understand how unpredictable MS is, I was able to pay my bills (with the help of my husband) while I was trying to rehabilitate during my absence from school. I happily returned to school, glad that I was strong enough to get there, and thinking I would never need to file another disability claim for the rest of my career. That’s me, the girl with her glass half full, thinking she was exempt from the course of MS progression, but the sad truth is that very few people have benign MS that never relapses, and I’m not one of them.

Fast forward to the year 2013. I found myself in a worse position than the time I was out on disability six or seven years prior. This time I filed my claim, pretty much without incident, and I was assigned a claims manager who still works with me to this day. He understands my situation, and is very kind, always starting out our conversations asking me how I have been feeling. He understands (I think) that I am not going to get better, and considering that I am recognized as disabled both by the state of NJ and the federal government, things are slightly easier. Yet every year… every SINGLE year, I am required to fill out an extensive packet documenting my “activities of daily living”. This might seem a small task but for someone with MS, it is overwhelming to say the least. It contains about 10-12 pages, that must be handwritten, which is not easy with a hand tremor that reduces my ability to write. When I see the envelope come in the mail, I cringe and panic, and I wonder when they will understand that MS does not get better. It progresses, even in small ways, but those small ways can be very difficult to manage despite the fact that I am not working.

This is me, every year…. hardly able to crawl out from under the massive pile of paperwork required to document the fact that I still have MS.

If my experience with my private disability plan is any indication, we have made some progress as far as awareness goes, but we still have an incredibly long way to go. Multiple Sclerosis is exacerbated by stress, and the constant submittal of the same paperwork does not help. I would love to see in my lifetime a day when people understand that MS limits my ability to complete even the most mundane of daily activities, and that having to justify myself all the time is no longer necessary.I mean, receiving the same packet every year is the same as asking me if I still have MS and if so, how much longer will I have it. I wish I didn’t “still” have Multiple Sclerosis, but unfortunately I will likely spend the rest of my life with it, and I am ok with that.  It would save us all a lot of paper, time, and energy (not to mention stress on my part)  if they would just get a clue already!

Forever Friend

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I have always been of the mindset that I don’t need oodles and oodles of friends. I just need a few loyal friends with whom I have a deep connection. Some have come and gone through the years, as life happens. And it isn’t the quantity of friends that I hold dear, but the quality. Through all the ups and downs of life, I am blessed to have a very special “forever friend”, a name she coined for us back in the 1990’s.

Us… circa 1993

Meg and I went to high school together, but that was just the beginning of our friendship. We also worked together and we spent most of our waking hours together. We spent many hours driving around in her car (usually), car dancing, smoking cigarettes, or just hanging out. Beverly Hills 90210 was a given that we would watch together, and some of my most vivid memories center around those times. Of course, we got into our fair share of trouble together, but we were young and we were not tethered to much more than each other.

With my beautiful “niece”, Peyton.

We connected on so many levels, not the least of which was our shared socioeconomic background and the roles that our parents played at various times through the years. It seemed that no matter what I was going through, she could relate due to her experiences, and vice versa. Sometimes there were little gaps of time when we were both too busy adulting that we didn’t see each other as often, but when we did, we always fell right back into sync like no time had passed at all.

We survived our hormonal teens together, our crazy college years, and even the brutal years of trying to start our lives as adults. We have been there for each other through multiple divorces (in our respective families) and the inevitable drama that ensued, our family homes being sold, moves out on our own, medical issues, and about a gazillion other things. No matter where I am in my life I know that I have my forever friend who has loved me longer and supported me harder than just about anyone else in my life.

Even though life happens and we live farther away from each other than I would like, we still try to get together as often as possible. I absolutely love the way we have grown together even while not living 10 minutes from each other like back in the day. For example, we are both very fitness minded, and Meg has recently become involved in Spartan races. I find it more than coincidental that competing in a Spartan Sprint has been a goal of mine for quite some time, as a way of acknowledging my 15th MS diagnosiversary next year. I discovered that there is a race on the exact day (June 2, 2018), and when I mentioned it to Meg, without hesitation she signed up right along with me. And even though she will have already completed the “trifecta” by then (a sprint, a super, and a beast all in the same year), she is still willing to dial it back as I compete in my first. What’s more, she said it will be her best race ever. I can’t think of a more perfect way to acknowledge this date than with my lifetime friend who knew me before MS, before spinal fusion surgery, and before breast cancer, and who has been by my side through it all.

Proof. We are doing it together.

Megan is loving and kind, thoughtful and compassionate, selfless and sweet. I could never ask the universe for more in a person who I have leaned on so heavily for the better part of the last 30 years. She can still read me like a book, without even seeing my face, and friendships like ours don’t come along very often. In fact many people live an entire lifetime and never get to experience what it’s like to have someone like Meg to call their forever friend.

I remember vividly a session with my therapist long ago, when I first stopped working and was feeling abandoned by so many people. She told me that day that people come into your life for a reason, a season, or a lifetime. With Meg, there has never been a question as to where she fits for me, because she is the only person in my life who actually defies that saying. Megan came into my life for a reason, has endured the seasons with me, and will remain in my heart and soul for the rest of our lives.

(P.S. I know Meg is happy as can be right now because I have not included any incriminating photos and that we were young and free before the digital age!)

Bad Ass

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This is definitely not a term I would use to describe myself. I mean I was the chubby kid who was bullied through elementary school and spent more time crying than laughing. My dad’s job moved us from rural New Hampshire to Bergen County, NJ (a very metropolitan area just outside of New York City) at this very crucial time of my childhood. I’m a lover, not a fighter, so I viewed the bullying as something I deserved, and cried over it in the privacy of my own bedroom. That chubby little kid never would have thought that people would look at her as a bad ass for simply living her life the only way she knows how.

Yet in the past few weeks, I have been called a bad ass on numerous occasions, which definitely makes me laugh. I mean I certainly don’t feel like a bad ass. I spend most of my time smiling, laughing, hugging, and laughing. Did I mention I spend a fair share of my time smiling and laughing? I’ve never even been in a fight where I actually threw a punch, though I certainly was pushed around plenty during those early days living in Northern NJ.

Me on the first day of school, slimmed down after a summer at camp.

I’m the rule girl. When I was working, I consistently enforced the rules in my classroom, and I’m afraid that the same attitude bled into my personal life as well. I am still bound to rules more than I’d like, but not working has made it easier for me to let certain rules slide. Still, in my eyes, that makes me boring, not bad ass. Not that I find this term negative… in fact I find it quite a compliment and also very empowering although I am not sure what qualifies me as bad ass.

I mean, I have dealt with Multiple Sclerosis quite openly for over 14 years now. I used my voice as a teacher to educate my students and colleagues, raising awareness (and money) for the cause, with my only motive being a sincere hope that the next generation can live in a world free of MS. I let them see the good, the bad, and the ugly, but I always approached it as my calling to show that overcoming adversity and rising to challenges in our paths simply make us stronger, more sympathetic, and more grateful individuals. Is that bad ass?

Here I am with my “core” MS Walkers (2010), who represented the over 450 members of our team.

I have accepted the brutal cycle that MS is… one step forward and two steps back. I have worked hard to keep my body moving, even through the times of limited mobility and function, because I am determined to stay strong. I have changed my life, my body, and how I look at exercise, fitness, and nutrition, because it takes on new meaning when it’s not about how you look, but rather it’s about how it makes you feel: strong and in control of the only things that you CAN control. Is that bad ass?

A few years ago, I endured a five hour spinal fusion and laminectomy surgery, not because I wanted to, but because I had to. This was not part what I had imagined my life would be, but I accepted it and embraced it as part of my journey because there was no choice. I worked hard to rehabilitate afterwards and get back to the place where I am most comfortable with my body. I kept moving rather than using it as an excuse to stay still because I needed to take control. Is that bad ass?

My spine and the hardware that holds it together, in all its glory!

The next obstacle in my path was a curve ball, to say the least: breast cancer. I approached it the same way I approach everything in my life. I did what I had to do, never questioning why it was happening to me. I did it with a smile on my face because of the love and support I felt in my heart. In the grand scheme of things, I knew it could have been worse, and it was a huge learning experience for me. I learned about myself and what I am capable of, as well as about the people I surround myself with. Some people live an entire lifetime without having the opportunity to see their own strength and capabilities, which is a true shame since most times we don’t know these things until we are tested to prove them. As difficult as it was, and will be for the next several years, I am grateful to have learned so much. Is that bad ass?

Post-op picture after my lumpectomy and lymph node biopsy: looking blue (literally) from the radioactive dye used to highlight the lymph nodes that were removed.

Finally, and most recently, a little tumble down a flight of stairs left me with some broken toes. Compared to all I have been through, this (although totally painful and extremely limiting to my mobility) is nothing. I laughed my way through the visit to the Urgent Care, the x-rays, the doctor’s attempt at humor (I’m not so young that I’m just growing bone overnight anymore and I must not have given enough in the collection basket that week, as this little accident happened on a Sunday), and even laughed at the silly, ugly boot which will be an extension of my body for another 4-6 weeks. It’s a small setback in the bigger picture of my life, and I just have to laugh at myself because I can do so many difficult things without consequence, but apparently walking down stairs is not one of them. Is that bad ass?

These are my toes after having been re-set by the orthopedist.

My conclusion is that “bad ass”, like beauty, is in the eye of the beholder. I never thought of myself as bad ass, I’m just living my best possible life. It’s funny that I would never label myself as a bad ass, but other people do. I’m fairly certain that the chubby girl who was so often bullied never would have thought that being pushed around by some assholes would seem so small in comparison to the real obstacles that I have had to face as an adult. And even though I don’t exactly see myself as a bad ass, I can guarantee that she sure would.

Yup. My shirt says “FC” and my socks say “bad ass”. If you don’t quite get the “FC” part, let’s just say that the “C” stands for cancer.

Nephew

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Just over 28 months ago, my life most certainly changed for the better, and I never expected it to happen this way. Especially since the reason for such an amazing change entered this world at just over four pounds. That’s right… I am talking about my nephew, Lucas Scott Rankin.

 

I have a small family, and like most, we have our fair share of dysfunction. But even before he arrived, I swore to him that I would always be there to be his cool auntie, and that I’d never leave his side. And as cliche as it sounds, I have loved him from the first moment I found out about him.

It’s pretty awesome. Although he isn’t my nephew by blood, he most certainly is through my heart and soul. I have always felt a deep connection with him, and he is an endless source of happiness for me. This little guy has huge power. He has brought our little Rankin family even closer than we already were, which I never thought possible. Last year on Christmas night, Lukey gave me the best gift ever, when I heard him say “aunt” for the very first time. I thought my heart would burst right out of my chest because I had never felt that kind of pure love before, because I don’t have children of my own.

“Uncle Booce” with Lukey. Ahhhh those curls!!!

 

These last two and a half years have been a great experience, marveling at how much more he can do and how much he learns in between our visits. I have made a conscious effort to be a constant in his life because I always want him to have the same sweet memories that I do. Quite frankly, there is nothing I wouldn’t do for Luke, and I am hoping that as he grows up he will never doubt that his auntie is there for him. I will love him unconditionally and forever, and I hope he will trust me enough and confide in me because nothing will make me happier.

When I’m not feeling well, a visit from him, and now that he’s old enough, even a FaceTime call makes a world of difference and is better than any medication I could take. This past weekend, he sweetly pointed at my foot (in the oh-so-lovely boot) and asked about my “boo-boo”. Then he kissed it and hugged me, patting me on the back as he did so. Every time he says my name (Aunt Wennie), I melt because hearing it in that little voice of his is something that I have never experienced. He fills up my heart with so much love, and I find myself awe-struck by how this little boy, just twenty-something pounds, has the ability to make me smile so hard, laugh with my whole entire body, and love so deeply.

Although I wish he would stop growing up so quickly, I look forward to many fun times with him as he gets older. I envision sleepovers with me and “Uncle Booce”, and going on many adventures together. But for now, I am drinking in every last detail of him while he is toddling around, talking up a storm, repeating everything (uh oh.. time to start censoring my potty mouth!), and playing trucks everywhere. Plus, nothing in this world feels as good as Luke’s little hand in mine, and I will savor that feeling for the rest of my life. Even though we don’t share the same bloodline, we do share a last name. That automatically makes him the littlest (and most adorable) member of #TeamRankin, and I know that he will someday learn that membership does, indeed, have its privileges!

I showed Lukey the leaves that look like hearts so he pointed at it and told me “heart”. He has mine, that’s for sure.