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 CAKEAround 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 MEMy 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.