Tuesday, July 31, 2012

Don't Be Alarmed


I am on my way
I am on my way
I am on my way back to where I started


 ~Head and the Heart (“Down in the Valley”)

My Mom never learned to drive.  Ok, right before I got my license I remember she got her learner’s permit but it eventually expired (little known fact - that happens if you don’t take the driver’s test).  I don’t remember it being that much of an issue growing up, at least not for me.  I guess you only know what you know and as far as I knew, my Dad drove and my Mom didn’t, that’s just the way it was.
Sometimes, my Dad would go on multi-week international business trips but it was never anything my Mom and two older brothers couldn’t handle.  I remember all of us walking to church, hitting the grocery store for a quick shop (two miles each way) and even on some special occasions, we’d venture out to the shopping mall.  That was a three mile hike, taking us through such exotic locales as East Springfield (if you lived in Springfield, you know what I am talking about.  If not, then you are better off not knowing) and over the intersection of I-95, 395 and 495, which used to be called the “mixing bowl” – just in case you don’t believe me, it has its own Wikipedia page.

On most weekends, though, my Dad was around and a pretty standard Saturday for my parents would be for my Dad to drive my Mom to a mall so she could enjoy her favorite activity -- “shopping”!  (I use quotes, because she rarely ever bought anything when she went shopping.  For most men, this is still a mystery we have yet to understand about the art of “shopping”)  After dropping her off, my Dad would then go to a stamp or coin store (he was a collector) or other times sit on a bench at the mall and work his way through another novel. 
I don’t remember my exact age, let’s estimate it was somewhere between the ages of 10 or 11 years old, and on a few of these Saturday’s while my parents spent most of the day shopping, I was up to something at home.  It was a secret.  In fact, as far as I know they don’t know about this until now.  But there I was at home….my parents out shopping/stamp collecting…my brothers out of the house doing whatever it was my brothers did…and I was at home – baking.  Yes, that’s right, baking.
I’d fumble through one of my Mom’s cookbooks and find the most random recipe that called for the least amount of ingredients (with the easiest directions) and I’d give it a shot.  I struggle to remember anything specific that I baked, this only occurred two or three times but I do know that it was always in the cookie genre.  It wasn’t about rebellion.  Sure, I got the “if you leave, lock the door”, “no friends over while we are out”, “do your homework”, etc. but it probably never occurred to my Mom and Dad to declare “…and Michael, remember, no baking!”  And this wasn’t about feeding myself.  We had plenty of food in the house and nothing I made was edible, anyway.
I just enjoyed it.  The measuring.  The science.  Creating something of your own.  Unfortunately, I had no idea what I was doing.  I’m guessing most unsupervised 10 year olds would have about the same fate. Without much success, whatever short-lived baking phase I went through eventually passed.  It got buried under school work, friends, sports, trying to (usually without much success) make girls laugh at school and other general nonsense that a teenager floats in and out of.

LET THEM EAT CAKE

Around two and a half years ago, I was feeling pretty down about my health.  My new exacerbation's were becoming pretty common, in fact, most days I woke up afraid to stand up, worried that I wouldn’t be able to.  Sometimes, I couldn’t.  There were many instances of my legs just giving out from under me.  I’d try to play it off, hoping the children wouldn’t notice and reassuring Angela that I was ok.  I was struggling with potentially permanent changes to my vision and various other MS symptoms.  It wasn’t the happiest of times and I needed a change…something else besides thinking and worrying about my disease. 

So one day, I decided to bake a cake.  Not just any cake, no, one of my favorites – German Chocolate.  It wasn’t about burying my worries in food, it was about the peace of certainty.  You don’t add a splash of vanilla, no, you add one teaspoon exactly.  In a world of, “not sure why you have MS, don’t know what your progression will be, etc.”, following a precise recipe was a welcome change.  My health, my future had become the great unknown and I craved a sense of order and resolution.  It was time to replace the odor of  doctor’s offices visits with the inviting aroma of a freshly baked cake.  So after a little research, I found a recipe online, picked up a few things at the grocery store and to the kitchen I went.
I’m pleased to say the cake was a success.  That’s the good news.  The great news is the moment I started baking, it was like I was being reborn.  Outside of a couple of those clandestine baking expeditions when I was much younger, this was a largely unexplored part of who I was and it had remained nearly untouched for over two decades.  Think about that.  Am I alone in this?  I doubt it.  I bet most people go through life, missing out on or never fulfilling dreams, passions, hobbies…just because, well, regular life gets in the way.
What started as german chocolate cake carried on to homemade twinkies, apple pie, numerous birthday cakes (including a football field for Vincent and a butterfly for Gianna), Boston cream pie, carrot cake, cookies, fudge, cupcakes, brownies and everything in between – I’ve covered a lot of baking ground since then.  I’ve attempted to replicate some of my Dad’s favorites, using recipes passed down from my Grandma (and I hope I’ve done her justice).  I had the pleasure of baking my Mom one of her favorites, Black Forest cake, on her 70th birthday.  As a family, we’ve started new Christmas traditions of baked goodies.  On a few occasions Vincent has been my helpful baker in-training – we even have matching Redskins aprons.  The special moments and memories are priceless and I look forward to what the future brings to this part of our lives. 


 

A NEW ME

My writings have done much to document the hardships that come with having a chronic disease like multiple sclerosis.  The symptoms can fill a book, but aches and pains dull in comparison to the larger picture - guilt for not being the husband I had set out to be on the day I said “I do”, realizing that I’m not going to be the father that I had always hoped I would be, seeing my career put to a premature end; those are just some of the heavier issues that weigh on a person that is diagnosed with MS in his early 30s.

I write to help bring awareness and understanding to multiple sclerosis.  It is a very hard disease to understand, for those that have it and even for those that treat it.  But to highlight only the darkness wouldn’t give an accurate representation of my life.  MS may take many things and I choose to not tempt fate by presuming that it won’t take more.  But one thing I know it can’t take is my spirit, my zest for life and my belief that every day is a new day to be a new you. 
This isn’t a self-help blog entry, I’m not that guy.  This is about showcasing how a disease that has torn down so much, has also left in its ruin a second chance to become a new me.  I know I would have never started baking if it wasn’t for MS and the intrinsic rewards it has provided reach far and wide:  a new avenue to foster creativity, bond with my children and the chance to shower family, friends or Angela’s co-workers with baked goodies.  Best of all, it’s given me an opportunity to continue the tradition of some of Grandma Wentink’s recipes, in her honor and warm spirit.
I’m not starting a bakery tomorrow.  I have to keep this a casual enjoyment, my body wouldn’t allow anything more serious.  We’ve made the kitchen MS-accessible, bringing in stools while I bake to eliminate most of the standing required.  I have a drawer and cabinet dedicated to only baking so I don’t have to spend energy pacing the kitchen for tools or standard ingredients.  We make sure to schedule rest before and after I bake because even a small amount of time spent in the kitchen can drain me.  Often, when needed, Angela is on call to help give me a break – for example, cutting up strawberries or scooping out dozens of cookie dough balls and, most important of all, the clean up. 

I can’t cure myself.  I go to my treatment, I try to eat right, be active when possible, staying as healthy as I can.  But MS isn’t going anywhere.  Becoming at peace with this has allowed me to let go of who I was and start on the journey of who I now am.  I don’t say this for dramatic effect, or to overstate the light that baking has shined into our lives.  For Father’s Day this year, Vincent made me a present at his school.  A question was posed to VIncent, “What makes Daddy the best?" - his response, below, was as surprising as it was touching. 
We all live day to day not knowing what tomorrow will bring.  Having a chronic disease like MS highlights this paradigm; it’s an alarm clock that won’t go off.   Some might view the constant beeping as a warning sign of potential trouble ahead.  I can’t and I refuse to see it that way – my “alarm clock” is a reminder that every new day is a gift, a day to be a new you – and sometimes that new road leads you right back to where you started.

 


Wednesday, July 11, 2012



Humpty Dumpty sat on a wall,
Humpty Dumpty had a great fall.
All the king's horses and all the king's men
Couldn't put Humpty together again.



28 Days Later


Angela and I never had “the talk”.

You know, the whole “Are we exclusive?” or “Let’s define our relationship!” exchange that most dread and for some couples might work more as a bad luck charm than a step forward. Our friends teased us about how we were “just friends” although it was clear to all (including us) that we were anything but. Why fix what’s not broken? It didn’t take long for me to realize I wanted to marry Angela (the first night we hung out together) but I figured it was better to keep things “breezy” than make any declaratory statements about how she was going to be my wife one day. So, almost overnight, we went from friends that “hung out” pretty much every day to Angela telling me the night of my friend Randy’s wedding that she wanted “to be next!”

And so she was. Sure, I was wearing a tux that night and gave the greatest best man speech ever known (*) and that might have contributed to her request. There was also an open bar. But really, she was just saying out loud what we both knew already.


When the magic happened...


(*) Ok, maybe not the greatest. But certainly in the Top 10 of Best Man Speeches given in Ashland, Virginia on October 2, 1999.

Although we didn’t have “the talk”, we certainly discussed our future together. Our dreams. Where we wanted to be in 10, 20 or 30 years. If we wanted to start a family. How many kids? What kind of parents we wanted to be. Thoughts on finances. And most important of all, our mutual dislike of mushrooms. But this process wasn’t perfect and some things didn’t get fully fleshed out until after our marriage.

I‘m a fan of scary movies and soon learned Angela most certainly was not. I’m not sure how I missed the clues - she had nightmares after watching “The Sixth Sense”. Angela did graciously give it a try but honestly watching a horror flick isn’t that important to me – it wasn’t meant to be and watching anything from that genre for me is now a thing of the past.

One of our final attempts was the movie “28 Days Later”. I don’t remember a whole lot about the movie (it was ten years ago!), but I think it went something like this - virus that turns people into zombies, with only a few survivors who attempt to save civilization, etc. – can’t even remember how it ended but I'm pretty sure there was a sequel a few years later.

NOT A WALT DISNEY PRODUCTION


Little did I know in 2002, what a defining mantra the term “28 Days Later” would be in my life a decade later. Ok, so there is (thankfully) no flesh eating bacteria or zombies in my “28 Days Later” but it is not quite a Walt Disney production, either.

Every 28 days I have my IVIG treatment.

For me, the most frustrating part is the impact it has on my family. Everything Angela and I plan – grocery shopping, date nights, vacations, Vincent’s soccer practice/games, Gigi’s gymnastic, holidays, friend/family get togethers – everything – revolves around my “time of the month”. And it’s not like living with MS doesn’t already require us to live like this but it adds a whole new dimension.

Here is a peek into “my time of the month”.

FEED ME: DAYS 25-27


Usually two or three days before my next treatment, my body runs out of fuel and is not shy about letting me know. How it tells me might vary month to month but the primary way is through pain. But this discomfort is a more unique brand than my regular MS fun. For example, my lymph nodes get really sore and tender. Sometimes, this tenderness spreads to the rest of my body, almost as if I have the flu.


My legs get a case of the “twisties”. Imagine a loaf of bread that you just bought from the grocery store. At the top is a “twist tie”, used to keep the bread fresh after using. The best I can explain is that it feels like somebody is taking some of those twist ties and tying them around the veins in my legs and well, twisting them.

twist, twist go away and don't come again some other day

I won’t list out an exhaustive list of my other “Feed Me” symptoms; what’s relevant is that they serve as a not so subtle reminder that my next treatment is near. 

 

DADDY GETS HIS MEDICINE: DAYS 28-29


I don’t remember a lot about my first treatment. I was still working at USAA and had intentionally scheduled it the first few days of the month, around the time that my team would be waiting on financials to be completed, monthly product #’s to be released, etc. – the proverbial calm before the recurring month-end storm. That wasn’t my biggest worry; the more pressing issue in my mind is how I was going to explain my new schedule to Vincent. Gigi was too young to sense any change but Vincent was another story. Sometimes I think he knows our daily routine better than we do. This is back when I worked from home on Monday, Wednesday and Friday, so when I left early in the morning – for three days in a row – he knew something was up (I’ve since graduated to finishing my treatment in only two days).

I thought I was protecting Vincent by telling him that Daddy had important work meetings to head into the office for but really I was just making myself feel better. Feel better that I was taking time off work. That the progression of my MS required more aggressive treatment. I wondered, how I would I react to the treatment? Would I be able to adjust back in time for my job? Would the treatment help or would I continue to get worse? What will my wife think, sitting there watching an IV drip into me over a period of 4-5 hours for three straight days? I remember not being able to look Angela in the eye those first few treatments. I don’t want to say I was ashamed of it but maybe I was…what I do know is that it was far from any future I had envisioned.

Running on, running on empty
Running on, running blind
Running on, running into the sun
But I'm running behind


WALKING ZOMBIE: NIGHTS 28-29


During my now two days of treatment, I’m a walking zombie – but not like in the movie -I use that term as my Mom used to when I was much younger. She would tell me that I shouldn’t stay up late or the next day at school I’d be a “walking zombie”. Not sure about back then but no doubt it is certainly applicable now. I’ll return from my treatment around noon and basically just lie down in bed until Angela and the kiddos get home. I don’t really sleep, its more exhaustion, my body doesn’t want to move and lying down provides a sort of comfort. At night, I try to hang with the family but usually I’m having a hard time keeping my eyes open (it’s not about sleeping, it’s about having the energy to keep my eyes open!)

GUMMY BEAR ICE CREAM FOR DINNER? DON’T MIND IF I DO!



Yes, please!
Eating – well, I could do a journal entry on my appetite alone. Let’s just say that during these the two days of treatment and one to two days after treatment it is quite bizarre. Usually, I don’t have an appetite for much. Of my usual dinner portion, I’ll maybe have about ¼. But that is if I can stomach what is even in front of me. I’ll usually crave odd items – which have varied by the month – gummy bears, chocolate bars, ice cream or maybe salty chips. Angela would ask me what I want to eat and there is not one meal that would ever sound appealing to me. Usually by the day or two after my treatment I need a big cheeseburger…or some waffles (protein vs. carbs – again, it varies by month) to act as the meal to start re-charging me.

We no longer tell Vincent that Daddy is going into the office for special meetings. Obviously, I’m not working anymore but I stopped before I left USAA. The night of my very first treatment, Vincent and Gigi came running inside the house to find me. I was upstairs lying down in bed. Vincent led the charge into our bedroom and the first words out of his mouth were “You are the Incredible Hulk!” It took me a moment to realize that he was referring to the green bandage I had on my arm from my treatment. I realized at that moment that I was going to be just fine with my monthly infusion. Vincent turned all of my anxieties about my IVIG treatment on its head – instead of feeling shame, I was his super hero. And so I’ve been, month after month, from The Hulk to Silver Surfer to Iron Man.

DADDY GETS HIS GROOVE BACK: DAYS 1-4


Start of the new cycle. Lots of rest and recovery. Elation that another months treatment is over. As much as the days leading up to my next treatment are spent with dread, disappointment about all the things I haven’t accomplished during the previous 28 days, my days are now filled with hope and optimism of the bright days ahead.

It’s a bumpy road to recovery. Imagine the worst flu you’ve ever had – that’s how the side effects were described to me before my first treatment -and it’s a pretty accurate description. Now imagine having that flu 12 times a year. I used to create Excel spreadsheets to support business decisions at work, now I have one to track my monthly IVIG infusions.

Beyond the physical ailments, is an emotional toll, seeing the role Angela must shoulder while I’m “checked out” during this week. Vincent and Gigi, the little bit of innocence that is lost each time they see their Daddy get his medicine. They are much too young for me to explain the why but they know their Daddy is like “Humpty Dumpty” and I need time and help to put myself back together again.


This wall seems sturdy, what could go wrong?


EPILOGUE


As dreadful as this period is, it is a blessing that we’ve finally found a treatment to give the progression of my MS pause. And that’s a relief. Before I went on IVIG and took an early retirement from USAA, my life with MS was becoming a “based on a true story” horror flick but it didn’t have a runtime of 90 minutes, there was no popcorn, no over air-conditioned movie theater and certainly no Mike & Ikes.




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