Im so over writing about MS things that I decided to go the therapeutic route and write “Things About Me, part 2”.
I feel somewhat better now. ♥
Ended/turned the page of two chapters of my life today.
(The fact that goes with the feeling of “uhhh my life?!?!”)
Read more on The Sparkled Life website, http://www.thesparkledlife.org/2013/04/a-turning-of-page.html.
My mom has said to my twice now (if not more), since the beginning of “The Sparkled Life”, that sometimes I only show the good on this site…and forget to show the bad.
Not that every post must be pessimistic. It’s just that it is often protratyed that I’m better off than I actually am.
I answered with Pride: if I told the truth, who would then want to be my friend? Who would want to hang out with this girl? Who would want to date this girl? Who would want to take this girl seriously? Who would want this girl on their team?
I’m too much to love, too much of a liability.
My pride wants to “sparkle” my misfortunes out of fear in that showing my weaknesses, I’ll be left alone for the fight. Im afraid that people will eventually stop messaging me, stop asking me to hang out, stop wanting me in their lives.
Its already happened with some. So maybe that is why my pride built these walls.
But this time, truth must trump.
Because, if my end goal of this trip, The Sparkled Life, is to create Multiple Sclerosis, then Im not only doing myself a disservice but all those fighting the fight as well by not sharing.
The truth is, I’m really, really sick.
So sick that at the moment typing this draft is causing me pain.
Starting last Friday and trickling down through the week, my body relapsed to a bad point.
The real truth is that MS is destroying my body. And overnight, it took all my hard work of fighting MS away, without even asking. #howrude
Yesterday was suppose to be my 4th infusion of a drug that is/was suppose to help me manage this disease. However, once the hospital saw my condition, they immediately sent me to the neurologists to figure out what the hell was happening.
I can confirm that yesterday made it on the list of 5 worst days of my MS journey. I wont go into details but rest assured, it is up there.
The humor of it all was that during the chaos, my mom held my phone to answer phone calls, texts and emails. This is currently what my phone looks like:
(this is my “Today is ugly and I hate MS face”)
At least we could find the humor, bunny ears and all.
To spare details, today went a little bit more smooth. A hospital visit, another MRI.
(making hospital gowns look good since March 2012)
Honest truth: I wear the sunglasses to hide my worn, tired, cried on face.
We have no answers yet, no confirmations.
My team of doctors want what is best for me, they really do care and will start Monday on additional tests, treatments, therapies. etc. I have faith that the next steps will help bring me back.
So, again, the truth is Im very sick and I need, no, I beg, for your prayers, for your good vibes, for anything you have.
I’m tired of being that girl who one day is walking around town with her third leg to the next not being able to hold a fork, walk, type and trembles with pain all throughout her body. I’m so over it.
Sparkle I will forever. But those sparkles are now arriving in tears of discouragement. I need your love.
Love always, Eliz
As previously mentioned, I covered some of the bases for my sister’s bridal shower, which was lovely.
Here are a few of the turn-outs:
The “I DO” door hanger:
1. Gather supplies (letters, paint, ribbon, glue)
(I wonder if my parents mind me using my window seat as my painting/crafting bench?)
2. Glue items together, hang on door. Easy as that!
The “Wedding Bells” Sign:
1. Gather supplies (poster board, paint, frame, print-outs). Glue together.
The “Instagram our Wedding”
1. Instagram is an easy way to collect pictures from your guests for showers and wedding. Here’s how I advertised it.
The “Through the Years” Collage
1. Gather Supplies: Frame or Mirror, wrapping paper, duck tape frame, pictures, tape)
2. Put together and hang on wall.
The “Thank you Favors”
1. Pittsburgh is known for it’s Sarris Candy. So to leave some Pittsburgh spirit behind, we decided to use their chocolate bars as the base of the favors.
2. Around the bars I put a black glitter band, two hearts and a “thanks” tag.
Bridal Games can sometimes be a little….boring, lets be real.
So I tried a few different angels.
1. Had everyone sign a little wood plaque with a love note, advice, quote, etc. Will eventually make into a scrapbook.
2. Wooooo can guess the amount of “love pills” aka jelly beans and M&M’s in a jar?
Even though I was tired and my MS was acting up, I thought it would be time efficient to paint the owls toes. Priorities straight.
3. The Who Knows the Bride best game! (Printable available)
Thankfully, Mom won. (:
4. And last, an original game that I highly recommend to anyone planning a shower soon. The Pinterest Game.
It’s the perfect game. You have a bunch of girls/women together, discussing weddings, babies, decorations, etc. Pinterest is bound to be a popular subject. Which is why if it goes public, buy stock.
This moment captures the game in action. Shower guest Sarah was gloating about how many “pins” she had; which by doing so, lost her her pins.
And the prizes. My favorite:
I had some classy ones too but I couldnt resist.
Overall, it was a great party and I had fun with my activities and projects. Though MS thought I kinda overdid it (when does it not?)
Happy Bridal Shower sis!
PS: This isnt my doing but that of our wonderful friends and hosts…the table settings and the food (beautiful and delicious!)
The other part of March 17th was my sister’s bridal shower part 1.0.
The 2.0 version was in Baltimore the weekend after (I unfortunately wasnt feeling well enough to make the trip but I heard it was lovely!).
Very good friends of ours put together a LOT of the shower, as well as were our hosts. I was in charge of the fun items: games, prizes and favors. I’ll do a DIY session with some of the creations.
It was a lovely time, having our family and our friends together. Having moved as much as we have growing up, it is nice to be in an area where we have community. Something to be very thankful for.
Bride with MOH and two bridesmaids
Mother of the Bride and Mother of the Groom
The girls of the family
Bride and MOH…aka sisters
For additional pictures of the shower, please visit here.
Thank you to all that made the day so special for my sister, those who traveled far, those who hosted and those who have loved and supported us through it all!!
Looking forward to the wedding in August!
PS: wouldnt be complete without a day after photo-shoot of normalness.
we’re so cool…cant even stand it
March 17th was a heck of a day! For two reasons: 1, my sister bridal shower and 2, my twin brothers birthday!!!
Yes, it is also St. Patrick’s Day. We celebrate/decorate for this day for two reasons:
- We are part Irish
- My twin brother’s were born on St. Patrick’s Day (it was planned)
So…my mom did a great job on decorating the house in green!
(My mom has a love for salt and pepper shakers; she has one (or two or three) sets for every holiday. Notice the Star Trek and Out-house shakers as well.)
Some of my dad’s side of the family came into town for my sister’s wedding and thus, the twins birthday as well. We had a very yummy brunch, sharing stories and catching up. It had been a few years since we had seen each other and it was just fabulous. It was funny to see the quirks we get from that side of the family. (;
I can remember it like yesterday when the twins were born. Its a beautiful story. My parents told us that our family was to become 5, we were having another sibling. Surprise!!
But then one day my mom thought she was having a miscarriage. We went to a friends house while she and my dad went to the doctors for a follow up. When they came to pick us up, my parents faces where priceless: my mom’s = excitement, joy, yay!!, my dad’s = stunned, blank stare.
Apparently when doing a “final” ultrasound the doctor found not one, but TWO healthy babies. Twins!! Surprise!!!
Then we found out they were boys…surprise again!!!
Oh and at one time there was a joke that there might be triplets but it turned out to be one of the twins doing tricks on the ultrasound lady. Surprise!!! jk
My mom was determined and drove herself to the hospital that March 17th day, though she could barely fit behind the wheel. Two healthy babies were born and our lives were forever changed.
Being a family of 6 kids seems like a lot for many. But for us, its just how it is. It’s complete. It was meant to be this way.
I interrupt this sparkly journey for a moment of, conflict, perhaps, words.
Ive been known to be a little aggressive on subjects that matter to me. More so in my past than now. But sometimes that little spark flies again and I feel that I have no choice but to speak up…or rather type it out.
I have MS. Currently, there is no cure for Multiple Sclerosis.
There is not much known about MS, except for some variables that include Vitamin D, living above a certain line across the hemisphere, being female, etc. But even those variables dont have the answers as to why behind them.
So with all this unknown, my first warning when diagnosed was to never believe anyone who can say they can “cure” MS. It is incurable. I am sorry to burst the bubble.
Research is done daily and I know we are close. But there is no cure at this time.
Some items are known to help relieve the symptoms and the pain. Such as acupuncture. But even my acupuncturists, on first meeting her, probably one of the most natural people I have ever met, said that she can help me feel better but she could not cure me.
This is all said to lead up to the purpose of this writing portion: if one sends me a message or says that they have heard of a cure or know of a way to cure MS, etc, etc,… I find it degrading to the disease that I have to fight daily, I find it degrading to my being.
I will not deny that there are natural ways in which a person with MS can help relieve their symptoms (as mentioned above).
But anyone who claims they were healed of MS by a certain product is either pitching a good sales pitch or didnt have MS in the first place.
MS causes scars, lesions, on the nervous system. These scars cause disabilities. They cannot go away.
And when someone who has a serious case of MS, to present flashy statements in her face is a sure way to light a fire of disdain.
As I said, it degrades my fight.
How i WISH there was an easy answer. How I could eat some fancy shakes and use essential oils and be “healed”. But this is not the case. Yes, Im on medication that isnt exactly lovely. I dont like being a pill popper or infusion user. At all.
But its a quality of life issue. Without these medications, I wouldnt be able to function. I would get worse daily. And excuse me, not to be morbid, I’d be led to an even earlier death. So please, dont mind if I take a few pills so that I get a more full-filled life out of it.
It degrades not only my fight I fight daily, my fight to get out of bed, but also the fight of 1000’s of others who are fighting the same. The fight their families are fighting. The fight their doctors are fighting. The fight all the Multiple Sclerosis associations are fighting.
It degrades my work to create awareness, all those walks, all those bike paths, all of it.
Yes, live healthy. Live strong. But please respect my disease and my fight enough to not underestimate my daily battle.
And educate yourself. Know what you are preaching prior to sharing.
I know why people share this information; because no one wants to see the pain. An easy answer is a great solution.
But we arent there yet.
So instead, help me by believing in the powers that will lead to a cure: prayer, positive energy, MS Awareness, hope.
We will find a cure. It will most likely be a combination of all the efforts out there, natural, alternative and medical. And when that day comes, we will celebrate. We can exchange messages on what great a day it is.
In the meantime, please feel free to share articles of positive research, positive movements. I encourage it and appreciate it!! But no more “cure MS” please. Im so over it.
Respect my fight. Respect our fight. Help our fight. Please dont discourage it.
Today marks the 1 year anniversary of being diagnosed with Multiple Sclerosis.
It’s been, thus far, the longest, hardest, most painful yet most exciting year of my life. This is an affirmative.
I spent my 1 year day with my family, Starbucks, one of my best friends at one of our favorite restaurants for lunch, came home to a box of goldfish and Starbucks giftcards (thank you!), had a good cry and treated myself to a hot shower.
I havent had a “hot” shower in such a long time…the heat is bad for MS, this we know. My showers usually include a light warm water stream with a blast of cold at the end. The hot shower was quite a luxury today.
March 20th 2012 was a bad day. I had already lost feeling in my legs and I was very concerned. I decided that if I woke up the next morning and it was worse, I’d call the doctor.
March 21st was a Wednesday. Wednesdays were BD Meetings at our company. Since I was the BD Manager that meant arriving a little early, prepping the conference room and such.
That morning my alarm went off and I sat up to get out of bed. It was then that I realized it was worse. The loss of sensation was up to my abdomen. When I took a step to walk, I had to tell myself “move your leg”.
I had a morning full of meetings. I kept telling myself “get through them, efficiently, then call the doctor. You can do this.”
When my agenda finally caught to a breather, I called the doctor I had seen a few days earlier. I told her what was up and she said to go the ER.
So I went. As I’ve shared before, I sat in the parking lot of that hospital for about 30 minutes, just sitting. First, I was alone. I cant deny I wasnt scared. Second, I kept going over “what if this isnt just a virus? What if this is bad?”. Third, I didnt want to walk that far. (:
But I did. They got me right in, admitted and sent to a MRI. Worst MRI of my life. My legs were starting to contract and I couldnt hold still enough for them to get good pictures. It took forever and I remember there were some tears.
After the MRI, I returned to my room. I was asked a LOT of questions by various doctors for the next few hours. My head was spinning.
I thought they might let me go home. Shows how little hospital experience I had…admitted meant an overnight. My first hospital overnight.
It was 10:30pm and I was going to brush my teeth and wash my face prior to bed. When I came out, the nurse was there with a phone.
On the other end was the neurologist. He had looked over my MRI scans. He confirmed that I had multiple lesions (8-10) on my brain, neck and spine. We would run further tests but he was confident of the diagnosis.
I had Multiple Sclerosis.
As I hung up the phone, I was a little stunned. And very naive. So naive. We all were.
MS. We knew people with MS. They live just fine. They go on to have full careers, have families, live dreams.
These MS sparklers still suffer, I dont deny it.
But a year later, here I am. Stunned still that this is my life, so far from the MS life I had googled and confirmed I would have that night a year ago.
I’ve spent the past year “keeping my head up”, staying positive, living each day because “its gotta get better”.
And I’m stuck, because no matter what I do, what we do, what the doctors do, I’m still very sick. I hide it so well somedays. Today is not one of them. I’m tired of being sick. I’m tired of MS. I’m tired of doctors, of MRI’s, of needles, of medicine, of appointments, of not knowing how I’ll feel tomorrow. Im so tired. And we’re only through year 1.
With that said, I have much to be grateful for. As tired as I am, I can see the benefits that have come out of this year. And if I keep my eyes and heart focused on those benefits and blessings, than I can only imagine what the extra years will bring.
Hope. I dont really have any other choice. So I just keep repeating it and believing it. As hard as it gets. Hope.
Yes, I could spend every day crying over this experience. And I do cry at times. I believe it’s healthy to let tears fall; its an emotion.
But in the words of Adiana Lima with regards to crying (and limiting it), “my mascara is too expensive.”
So with that, year 1, you sucked. But you were good too.
Cheers to that. Cheers to moving forward. Cheers to friends, family and puppies. Goldfish, Starbucks and Champagne.
Cheers to you. THANK YOU. For helping me get through year one.
Much love, Eliz
PS: this song has been going through my head all day. And while it doesnt exactly apply, it does have some underlining connection. Rolling Stones-Wild Horses.
Today I attended my first meeting in quite some time.
It was via Google + meetings and the meeting topic was “Bike MS: City to Shore 2013 Planning Meeting”.
For those that may remember, we participated in Bike MS: City to Shore last year with Team Sparkle, raising over $12,000.
The planning team asked me a bit ago if they could use my required “Why I ride” quote from the registration for their 2013 promotion. Of course I answered yes.
And I’ve been so humbled because they’ve taken that quote to their facebook, to their email campaign, to their mailing campaign, etc. Quote and more. It’s been such an honor.
A few days ago the planning team asked if I could be so kind and say a few words at their opening Planning Meeting for this year’s Bike MS: City to Shore.
Which occurred this evening.
And it was quite an honor.
The “speech” I gave:
Thank you Nicole and thank you Bike MS: City to Shore team for having me speak here today and for allowing me to help create awareness for the disease that has so taken over my life….literally
A year ago I was gladly defined as a corporate girl, climbing the corporate ladder and fortunately, despite the economy, corporate world was good to me.
I had completed my MBA and was working as a Business Development Manager for a technology company. Every sacrifice I had made to get to that point made it so worthwhile; for I was witnessing my dreams coming true.
Then, a year ago, to the day, I realized there was a slight problem: I couldnt feel my legs. I woke up March 21st and I couldnt feel up to my abdomen. It was suggested by my doctor that I go to the hospital, led to believe it was most likely a virus.
So I went. Up to that point I was perfectly healthy and this was actually my first hospital admittance. After a long (gotta love it) MRI, it was concluded at 10:30pm that evening that I had Multiple Sclerosis. They had found 8-10 lesions on my brain, neck and spine.
As naive as we were about MS (at the time, I didnt even know how to spell sclerosis), we were optimistic. Fortunately this has stayed our constant theme.
After a steroid treatment, it was suggested I go back to Pittsburgh (where my family lives) to spend a few weeks. I was living in an apartment three stories high, alone and the suggestion to move back to my parents was a good idea and place for recovery.
But a couple weeks turned into a couple months. From March through May I went through 4 additional steroid treatments, many more MRI’s and stumped many doctors. I wasnt getting better, only worse.
But then one Friday I did feel better. I drove myself to Target, got a Starbucks, even went to a movie.
And then, I woke up the next day without the ability to talk, to walk or to be able to do fine motor skills. Just like that, overnight.
I spent 2 weeks in the hospital, then moving on for 4 weeks in rehab. Steroids were already counted out as they could provide no relief. I had 5 plasma exchanges and this provided me enough positive change that the doctors allowed me to go home.
It was during this time that we, my family, my friends, my community, realized MS was here to stay. In the words of my MS specialist “I just have an unlucky case of MS, lesions in unlucky spots”.
I’ve never been lucky so I didnt find this too discouraging. Rather, we kept up the optimism and kept on moving forward.
Though the doctors had done “all that they could” and I was on a disease management drug, and various other drugs, I was left with permanent disabilities. It was and is still today, challenging. I also had to leave my corporate world for the world of disability, a humbling experience.
Two positive things came out of this realization that MS was now my life: The Sparkled Life (my blog) and Bike MS.
The Sparkled Life began as an easy way to update many people on my status. One blog update vs. 30 emails…I’ll take it. But its grown. It’s been my ability to express my words when I couldnt speak as well as an opportunity to share MS Awareness. So many gifts have come from the sparkled life and I look forward to continuing its path.
As for Bike MS…it was also fortunate find. I am the eldest of 6 kids. My dad is an avid cyclist and thus, so are we. Prior to being diagnosed, I was biking 20 miles,5 times a week on my recumbent. It’s what we did, together or apart.
As we researched a little more about Bike MS, we discovered City to Shore. Upon finding it we decided right then and there we had no choice but to ride it.
My dad grew up on the Jersey shore, it’s where I was born, and lived for most of my childhood. We actually lived in Ocean City two blocks over from where the race ended.
So as I worked with outpatient PT and OT to help with my disabilities, Team Sparkle, our team, started to prep their legs and butts for the long two day ride. Team Sparkle was a team of the men in my life, joined because they knew they couldnt fix me. They couldnt heal me. They couldnt take my pain away. But they could bike for me. And so they did, without a complaint.
I had a moment one day in August, realizing despite all I had lost, I still had my ability to bike. We had two recumbent bicycles in our house I used often and it was what we used for PT exercises.
So hell, I decided to join Team Sparkle as well. We found a tricycle recumbent (since I have issues with balance) and we were ready.
Crossing the finish line at Bike MS: City to Shore I was overcome with emotions.
First, hardship: all these people were here because of me, because of a disease I had, a disease that leaves me most days in bed or in a wheelchair.
Second, humbleness: again, all these people were here because they believed in me. They believed that the daily fight I fight is worthy of a cause. And a long bike ride.
Third: hope: MS is a challenging disease. Many people do not understand the disease or what it is like to be diagnosed with it. Add on top of it that you’re 26 and already far down the road of a disabling MS case, it can be a hard burden to carry. But to witness all the people who biked, who volunteered, who planned the event, YOU provided me with enough HOPE to last all year.
As already expressed, MS has taken away a lot from me, leaving me with disabilities in their places. It causes fatigue to the extent that I’m happy if I’m out of bed for more than 6 hours. It took my corporate dreams and ladder and drowned it with many other of my dreams. Its even cost me relationships, for some people do not know how to cope with MS or disabilities.
But it hasnt taken my sparkle, it hasnt taken away who I am. And it wont.
Because, as my tag-line says, its a very simple answer as to why I Bike MS: to show, at the end of the day, who is, still, the boss.
I want to thank you, for allowing me to speak to you today but more importantly for your work with Bike MS: City to Shore. I’m just one of the 1000’s who you help provide hope for, a hope that keeps them, me, fighting and sparkling. Thank you!
I will always be thankful and honored for this opportunity. And how fitting that it occurred on the eve of my 1 year Anniversary of MS.
I come from a faith filled community. When first diagnosed, I was greeted with many “I’ll pray for your healing” sayings. When it was becoming apparent that I was not going to be healed from MS, I could sense the discouragement in people’s response. “Well, I’ve been praying….”.
Eventually I just asked people for prayers of support, hope and the ability to take this diagnosis and use it as a way to create MS awareness.
Well, God heard that prayer. Why He choose that prayer over the healing prayer I’ll never know.
As I mentioned, tomorrow is my one year anniversary with MS. Look where a year has brought me to with regards to creating MS Awareness.
With The Sparkled Life tumblr alone:
- Visits: 11,743
- Unique Visitors: 3,776
- Page-views: 31,682
And then with this honor of partaking in the Bike MS promo, which speaks for itself.
I cant deny that there’s some reason behind it. As ugly as I get at the disease and what it has done to my life, I have to trust that it will be used for good, for MS Awareness.
So that one day, a girl with MS can wear heels and walk normal because there is medicine, there is a cure.
If I cannot, then wear yours proudly. For the future ones.
Much love, Eliz
(ps orange love necklace…perfect MS awareness piece! From ReduceReuseRenique aka friend Nicole)
I feel like a cat sometimes. A cat with 9 lives. But instead of lives, it’s careers, chapters.
Before business, before technology, before higher education, there was politics.
I started my political career in 2003, when George W. Bush was running for re-election. I worked with various organizations on bringing the voting power to the swing state of Ohio. I had two high achievements that year: 1, putting together a public event for “Get out the Vote” tour with Sean Hannity and 2, receiving an official letter from the White House thanking me for my work.
Heading off to college, I didnt know exactly where I wanted to land in the political world, but I knew thats where I wanted to be. I began and completed my BA in Legal Studies, a pre-law program. During my three years of schooling, I participated in many political events on campus. Off campus I worked in 2006 for a Senator in CT and in 2007 I spent the summer in Iowa working with a Presidential candidate with regards to the Iowa Caucus.
(Presidential Candidate and I)
I was good at politics, if I may be allowed to brag. Though I didnt recognize it at the time, I treated politics as a business, campaigns as a project. Strategies were built around the principles and promises of the candidate, the products so to speak.
It was also during this time I learned how to gain that oh so lovely sales quality of trust. I could walk, door to door, passing information on our candidate, with a smile and a “You can trust me” handshake, winning votes.
Then one day I was sitting outside, watching the stars. Random that I remember this moment. And one day I will write further words around it. Now isnt the time to point fingers and name names. However it was during that moment that I realized I was doing it wrong.
I joined the political world because I wanted to make a difference. And I thought I was. But only for some.
For example, the candidate I worked for had a strong stance on the pro-life issue, of guarding the unborn. I believed in that. But while standing for the rights and for the love of the unborn, the candidate, and those on the campaign, myself included, were disrespecting the lives of the living. We would bash other campaigns. We would protest other events. We would play dirty politics.
To win. That was the end game.
And at that moment I realize that it wasnt my game anymore. I wanted to love everyone, regardless of born or alive. Regardless of democrat or republican.
Yes, we may disagree on issues. That is called democracy. That is called freedom. And why I have my own opinions on what government is doing right and/or wrong, Id rather discuss them than fight over them.
At the end of the day, I decided to just be an American. Red, white and blue.
I left the campaign three days later. Came back to school, pushed as hard as I could (including taking 22 credits in one semester) and graduated a year early.
And that is where I found business and higher education admission consulting.
But I still kept one foot in the political world. More on the consulting/volunteering side however. For three years I worked for CPAC, meeting just about every Republican and Tea Party person there was (including Ron Paul, my favorite).
(some of my favorite CPAC ladies)
I ran into (literally) a Sarah Palin and John McCain rally one time during a business trip. I was dressed in a suit and it was raining (my meetings for the day were done so I wasnt concerned). I walked in with the right crowd however for security thought I was “part of the Palin party” and escorted myself and two older women to the front. Granted, I could pass as Palin’s cousin. Back then. Her new additions to her face have changed that resemblance somewhat.
The same trip I took the back way out to beat the crowds (campaign crowds are always…interesting) and while doing so ran into John McCain. He is a lot shorter than he seemed on tv. It could’ve been the heels I was wearing that day as well.
I also spent 10 seconds of fame on Drudge Report back in the year 2008. I was working for CPAC and in our “contract” we were asked to exclude ourselves from any interviews. I was approached by a young, dishevled man who didnt ask for my name, just wanted to ask a question, with a little hand held camera. I told him sorry, but I cannot as I showed my badge. He said it was for a school project. Which I believed. His question “which candidate will you vote for?”. Since it was just for a school project, I decided to pull one of my ditzy reporter voice and moods and responded with an answer that went something like this: “Well….most likely Romney because his sons are like soooo adorable and cute. Their hair. Omg. Yes Romney.”
At the end of the day CPAC always holds parties. As I entered one of the ballrooms, some kid pointed at me and said “look, its the girl in the pink shirt from that video on drudge!”. I had worn a hot pink shirt that day. Points for me.
(Before the coffee am of the “oh so lovely drudge ditzy” video)
Eventually I retired too from CPAC world. This past election I didnt even raise a finger, mostly because I was pretty sick.
But it is CPAC week now again in DC. And I cant deny that I miss it a tad. It is glamorous. Great outfits, lovely shoes, meeting famous people, chick-fi-la for almost every meal, ending the nights with wine, making friends, discussing politics.
However, I dont miss leaving the political world. There are some people cut out for it. I was for a few years then retired early. Enough time to write a book about it while still getting out without any wounds.
Why this long story?
Because, while I feel I have lived “many lives”, or rather, have various chapters, I will say that I came back after the summer of 2007…different. Something had changed. My heart, yes. My dreams, yes. But also (and I am speculating), my health. If I had to pinpoint a time in which I felt a bodily change, it would be then.
Its all speculation. Doctors will never say when my MS “started”. It could’ve been years prior to that. But that summer had something to do with it. Maybe it was the “get out of politics” card I needed to prepare myself for the storm ahead. Who knows.
In the end, I feel that that summer did end one chapter and began anew. The one that led me to where I am today. Where I am today isnt exactly where I wanted/want to be.
But if I may be so bold….I feel as if I am a good person. I am surrounded by fabulous friends and family. I know what it takes to listen, to smile to strangers, to not judge. To suffer, to cry, to know that life is full of disappointments. And then to recognize at the end of the day, life is still precious.
We’re a week away from my 1 year MS anniversary. During this week I will be approaching two goals: 1, recapping the moments leading up to March 21st (more for my sake, for documentation for future reference) and 2, thanking those who have been along with me for the ride.
It’s been a hell of a week. It’s been a hell of a year. It’s been a hell of a life. And I’m only 26!
If I can only but learn and share one lesson it is that life goes on. It takes months, tears, bottles, shopping, starbucks…whatever your recipe is. But tomorrow’s will come. New chapters will begin.
And as I ask God tonight why in the hell I’m where I’m at today instead of where we, or at least I thought we, had planned upon, I hold on to that lesson. I hold on to the next chapter. Or rather, the continued chapter of…
the sparkled life.
I consider myself a good driver, well-balanced.
I stay within 5 mph of the speed limit and have only gotten one speeding ticket. (In my defense, this speeding ticket was in a “catch-you” speed limit spot).
I’ve had two accidents: 1 my fault and 1 not my fault. The one that was my fault was actually before I could even drive. I might’ve bumped/crunched a car with a lawn mower.
I give pedestrians the right of the way and I always slow down for cyclists.
My driving has stayed the same since diagnosed with MS. Actually, I’d say its improved. Im more patient, not in a rush and like bigger cars instead of my little sports packaged green love.
In addition, I have a legitimate reason to access the princessest of all princess parking…disability parking spots.
These spots are guaranteed for those with disabilities, those who have the blue and white disability pass. To apply, a doctor’s note is required and an application. A few weeks will pass and then low and behold, your pass arrives.
Due to what reasons you are claiming the need of the disability pass determines how long the expiration date lasts. My first one doesnt expire until 2017.
I keep it in a little leopard case and I cannot express how many times it has been useful. Walking is tiring and to be able to park the closest to the door allows me to have the energy to actually do things.
However, I have a confession to make. I’ve become a passive aggressive parker. When I see a car parked in a disability parking spot with no sign, I become very…confused.
I understand the rules of entitlement, the rules of “Im running late”, the rules of “Im old”. I cannot understand however how those trump the ability to park in a disability parking spot when not disabled.
This has occurred a lot in the past few months. Granted, its Pittsburgh. Its cold, no one wants to walk far in the snow/rain/sleet/wind.
But at least you can walk.
So whats left is me, who cant really walk, driving around to find a less than perfect spot. Yes, it might only be an extra 20 feet, but that 20 feet costs me more energy than I’d like to share.
I’d be completely happy to trade in my blue and white princess parking sign if it meant I could walk and park like a normal person.
Thats not the way life has turned out though.
So, in the direction of being that passive aggressive parker, I have created little cards. These cards are specifically designed and for those that take advantage of disability parking spots without the sticker.
Today was the first day I used one. I was gathering some supplies for my sister’s wedding shower and was thankful to find the last disability spot still open. There was a car in the first spot, happily parked, with no disability sign (I walked around the whole car to check prior). They also had a “Jazzercise” sticker on their car, publicly illustrating they work out. Good for them.
I put the card right over the sticker.
Yes, being passive aggressive is not an answer for everything. And these acts perhaps arent a good way to remain positive and encouraging on my outlook on life.
i’ll admit, I’ve become MS, disabled entitled. I expect certain things due to my misfortunes. I do however understand that these are above and beyond the norm moves so always try to remain gracious.
I allow myself these entitlements because I’ve lost so much. It doesnt even out the spectrum, but it helps. It helps health wise, and spirit wise. And as I said above, I would turn it all in to go back to where I was. But that’s not my life story anymore. This is.
In the meantime, I hope you think twice before taking a disability spot without a blue and white sticker. Otherwise, you might be greeted with my passive aggressive card on your windshield. With love of course.
Thank you to those who walk the extra 20 feet for those who cant!!
Much love, Eliz
(Curtis Kulig spreading his love tag)
Ive been thinking a lot about love lately. What it means, definitions, etc. Ive been fortunate to make observations of love, especially since I am blessed to be surrounded by very loving relationships.
Ive also had some interesting reads with regards to love. Which has only made the subject more on my mind.
First, the book “The World’s Greatest Love Letters” complied by Michael Kelahan. It was an impulse buy at Borders prior to heading up to Big Bear last week.
See, I usually am not into the romantic side of love. Romantic comedies, yes. Romantic vampires, sure. But romantic grand gestures of “oh my goodness, he touched my hand! We will be together forever and ever!” are not necessary something I lean towards. I dont believe in destiny or soul mates. I believe you fall into love and from there it is a daily choice to stay in love.
However, the book captivated me and I thought what inspiration for writing (I’ve been in a writers block…Im blaming my medication) than that of love letters. Love letters are writings of the naked soul, or so Michael Kelahan claims. And I’ve been quite impressed. They just dont write like they use to.
These letters, they do bare the writers soul. Who knows, perhaps the writers are writing pure bs. But I cant help but believe in the true intentions of the writer and what they put down on page. Especially when I google the lives of the writer and the one who is on the receiving line; many of these famous love letters did not end with happy love stories.
Yet they were written and their love was proclaimed. And now, for all to see. And read. Embarrassing? Perhaps. But to share a story of the soul should never be something to be embarrassed of, for it is real truth. So my comment earlier about them being BS, I should take back. Because If these men (and women) were willing to write such things and let it be known, then it must have been real.
In addition to my love letter reading, I stumbled upon an article written by a lady who finishes her essay with “A.L.Kennedy”. She is a 40 something woman from Scotland, a lady who very early on decided that brains were her go to and exempted herself from the pursuit of prettiness and the thought that it offered its own rewards.
She began a life of study, a life of books and writing and intelligent conversations. But she recognized the “other side”, that of prettiness.
“Once I started school, I encountered attractive girls. From their first entrance, they glistened and giggled and seemed visible in a way….which seemed to make their lives easier. When they answered a question correctly, they were correct. When they got one wrong, their wrongness was somehow taken to be cute and forgivable. I observed them, pondered….then studied even harder, to make up.”
For girls, there is a love spectrum. One side, beauty. The other side, brains.
Due to many resources, a person can really work on finding themselves on either side of the spectrum. Make-up, education…all resources.
Not one side is better than the other. Most girls go through different stages on the spectrum throughout their lives. In high-school, it usually sways more towards the beauty. Then eventually, once career season hits, a girl realizes that brains might be a good advantage.
By the time a modern girl is 25, she is hoping for two things: a happy marriage and a happy career.
So she will spend time and resources to find a middle ground, a place in the middle of the spectrum of both beauty and brains. And wait for Prince Charming, for love letters.
I have always been blessed with a good attitude when I looked into the mirror. I knew my looks werent perfect, my body not model-esc. But I knew how to work what I had. I started down the world of my fashion and make-up, hair styles and what worked best. I was finally coming to a place where I was the killer word: confident. This is a key in the beauty part of the spectrum.
I also would pride myself on having some brains. Even if some of the brains were more so connected to “how to work the system”, I considered my tactics smart and took pride in my work. I was a girl who was not ashamed to start discussing politics or philosophy or religion when first meeting a person. I was not concerned with walking into a boardroom full and producing a presentation on any subject. Maybe some of this was grown/due to my political roots starting before I could even drive but again it came down to the killer word: confidence.
So there I was, confident in my beauty, confident in my brains. I had love and was loved and had a job that was reserved for those who had more years experience than I. Was I in the middle of the spectrum? Had I found my resting spot?
Instead I found a hospital room with a doctor who I could barely understand tell me that my immune system is eating away at my nervous system and I am sick. Oh and no feeling in my legs. #awesome
Granted, one can argue, “MS is no excuse to change where one is on the love spectrum”.
I have to slightly disagree.
For while my looks havent changed, they’ve become more complicated. I’ve added a third leg, my fatigue makes even taking a shower a hurdle. I cant wear those beautiful heels that add height and the clicks that only add beauty boosts. If my excursions find themselves longer than a few football fields, I find myself in a wheelchair. People stare and when they do I wonder if its at my beauty or due to the complications. And if a poll where to be taken, Im pretty positive the majority would be on the complications side.
Then there are the brains. Well for starters, lesions are in my brain, eating away at the nerves that send signals correctly. So my brain doesnt work properly to start with. I now begin with a disadvantage. And when I do find myself willing to express what is on my mind, I sometimes cannot even get the words out. A friend once asked me if I wanted a shirt that said “I actually have a MBA and probably could argue you on any subject for hours whether Im right or wrong”. A reminder to the people who stare that guess what, I’ve still got the smarts.
Has MS stripped me of my beauty and brains? Where do I lie on the love spectrum now, with all these complications? Am I even on the spectrum?
Ive had many conversations with friends lately on love and on finding a lover. On how it would be nice actually if someone just touched our hands and decided yep you’re it, lets get married and live happily ever after.
Do I get the pleasure of that? I have limited offerings now. However, Im still me. I still have the same spunk and sparkle and looks and brains, sarcasm, ability to get my way in most situations…just limited and more complicated.
The killer word of love though, as stated already: confidence. Add to it my life anthem: hope.
Confidence and hope. Beauty and Brains. Love.
With these words, I have to conclude that one day I will see myself in some man’s eyes, a man in love. With me. With me and MS. Because apparently, no matter how hard I’ve tried to “shake it”, we’re a complete package, third leg and all.
The author I mentioned prior, Ms. Kennedy, says she rapidly choose a profession that would make her willingly invisible: she became a writer. And for 20 years she stumbled through the love spectrum of beauty and brains, all while remaining to her profession of invisible writing. Then one day, she met a man. “I fell in love. Thats worth a laugh. Or at least a smile.“ And this man finds that she fits perfectly in his life and due to this love, she has gained that killer word: confidence. And where she fits on the spectrum of beauty and brains doesnt matter for she has found love.
Some people need a man to help them find that confidence. Some find it in fashion, make-up, books; again, going back to what resources one uses to define where they fit on the love spectrum.
But perhaps confidence is something that is in us all along. Perhaps its what demands the desire to show our naked soul, to write a love letter in the purest form; and through this, we only build our confidence, regardless of how the letter is received. And no one, no thing, can take that away, those words, those feelings, that love.
In closing, I suppose my summary would be: dont spend more time finding your place on the love spectrum, a place between beauty and brains, that you miss out on expressing real love and finding your true self. Find your confidence.
(Im preaching to the choir; this is on my to do list: find your confidence again Miss Eliz).
Give it your best shot. Whether you are already in love or whether you are still searching for it. Keep your head up. Fight for it. Be confident in it. And know that loving yourself for who you are is just as important, if not more, than receiving love from another.
Except from God. Because His love is pretty awesome and guess what, always there.
I’d like to end with a piece of a love letter. It’s a love letter that is not followed by a happy love ending. But I’ve always found this relationship fascinating and thus, the letters, beautiful.
Josephine to Her Ex-Husband, Napoleon Bonaparte (1810)
A thousand, thousand thanks for not having forgotten me…Yours (letter) has been true balm for me. Be happy, be as much so as you deserve; it is my whole heart which speaks to you. You have also just given me my share of happiness, and a share which I value the most, for in my estimation nothing can equal a proof that you still remember me.
Adieu, dear. I again thank you as affectionately as I shall always love you.
Much love fellow sparklers, with all your beauty and brains!!
With confidence growing, Eliz
Today I leave for the beautiful state of California.
I actually spent a few years growing up in California, the northern area. Beautiful.
This trip however is to go and spend some time with a good old best friend, Bethany.
Beth was one of the first people I met in college way back in the day. She was an upper classman and took me under her wing to show me the ropes of the college.
After a few more years of friendship we became roommates in a cute little house we made a home. We were both working and doing our Masters at the same time and it was quite a trip. But we survived (even when we added a very crazy…like legit crazy…third roommate for two months) and became as close as sisters.
We’ve had our ups and downs. But one thing has always remained in our friendship: when we need each other, all it takes is a phone call and the other one is there.
We’ve both been tested a lot in our short lives. Tested by friendships, tested by relationships, tested by jobs, tested by sickness, tested by loss of a loved ones.
I know we will always be there for each other. And I am thankful to have such a friend as her.
Please take time today to read Beth’s story on life and love: http://cherylwilliamsjourney.blogspot.com/.
Please also send some prayers, love, good vibes, to Beth, her mom Cheryl who is fighting brain cancer and their family.
Here’s to my first MS flight, to good friendships and to love…forever and always.
PS: You can always follow my daily happenings on instagram (I take a lot of pictures) by searching #thesparkledlife.
There are certain things that happen in daily activities that bring me back to previous memories.
Before ms memories so to speak.
Today I had a very specific one.
I was driving to starbucks (surprise). It was a gorgeous day, sunny, warm enough to have your window slightly opened. And a breeze.
The breeze was what got me.
It took me back to about a year ago. I had gone to the DC office and was headed home.
DC traffic is awful, truly awful. But if you leave at a certain time, sometimes you can miss it, or at least skip the stop and go traffic and maintain a speed higher than 10 MPH.
This was not one of those days. It was a stop and go, 1.5 hours to get home kind of a day.
But it was beautiful. Last winter was very kind to NOVA.
Sun-room open, fun songs playing, thoughts twirling through my mind. Thinking about the meetings I had that day and how we could make that potential lead a client.
Phone call…”Eliz, we need a proposal, looks and sounds like this, get it by Wednesday?” Sure thing. Mind turns to proposal writing and creating an outline.
As I remembered and relived these memories, I couldnt help but let a tear fall.
I was on my to becoming Miss Corporate America.
I even had the picture ready.
I had worked so hard to be where I was at. I had sacrificed so much. And I was happy, content, pleased with my job. I liked going to work, and it wasnt just because we lunched and I worked with my friends. It was because I felt I was making a difference, I was working for a company with a strong corporate purpose. It was cutting edge, modern, new-age, and I was right there with it.
All my life, I wanted to become either the first woman President or the CEO or President of some company. Those were my dreams. Those were my hopes.
And a year ago, I could say that I was on my way.
Now, I feel like I peaked at 25.
It hurts so much to think of the potential that was left behind. The potential in me that cant arrive because of a disease that’s eating away.
Yes, this causes me to question why I worked so hard, question God even. Why?
Why couldnt I just live the life I had worked so hard for? Why do I have to live this one instead? The one that has me tied down, the one that dictates how my days go.
I want to hate this life. I want to kick its butt. I want to run away, run back to a year ago and press pause. I want to go back to the moment that my immune system went cray cray and take some extra vitamin C. I want it to stop.
And then I come back to the realization…there’s no use. This is just the way life is.
Its not fair though.
I dont know why I get to live this life and watch while others get to live the one I so wished for.
But I do.
Its good to recognize my frustration, my disgruntles with my current life status.
Its also good to realize that I cant go back and change it. I can only learn to adapt and make sure I have control over what I can, such as my approach towards this new life.
Which today isnt a good approach. But its a real approach. And sometimes, at the end of the day, thats all I can give. A real, honest, I hate MS approach.
And if I cant be Miss Corporate America, I guess I can settle with Miss MS Sparkling Princess.
To sparkling tomorrow.