Surviving Ms with Soul Intact: A Memoir

By Charmaine Zankowicz

The ups and downs of living courageously with multiple sclerosis is captured through personal journal entries while searching for the right formulas. Progressing from healthy to increasingly dependent, this MSer struggles along. Charmaines honest and candid memoir chronicles the twenty-two-year path of her disease and the gifts of family, God, and perseverance.
Through journal entries knitted together in brilliance, this memoir radiates daily resilience, detailed reason, and definite redemption. The words on these pages are a shining example of success amid suffering, and display a beauty far beyond brokenness. Writing with humor and wit, Ms. Zankowicz has created a masterpiece.
Aime Wren BA Eng. Lit.

Profound, honest, heart wrenching, brimming with joy and life; full of family values, not preachy, inspirational gratitude.
Shirley Buchanan LL.B

Charmaine Zankowicz shares her journey from infancy to maturity in both her faith and her struggle with MS. Along the way she proves that being tested in the furnace of affliction (Isa. 48:10) is a sure fire way to prove what you are actually capable of. It is also an example to others of how to follow in that tradition. Charmaine has used stories from the past along with insight from the present to illustrate what real hope looks like. Her story inspired the painting I did for the cover of this book Charmaine; always reaching beyond her grasp, now pulling others along behind her out of the darkness into the light. Adversity can be a wedge that drives us from God and hope or a magnet that draws us towards God and hope. Charmaines book is an encouragement to new Christians and especially to anyone who is struggling with chronic pain whether it is MS or any other physical or emotional difficulty. The "Furnace of Affliction" has helped Charmaine push out the edges of the envelope and embrace life outside her comfort zone she is real and she is inspirational read and reach for the light! Susan Rumford B.A., M.A. Th:S.C.P. (Counsellor / Psychotherapist)

The truth of what goes on in the mind, body and soul of a woman battling MS is shared in this book. It's not for the faint of heart. It will multiply your faith, increase your resolve; and if your belief is weak, don't worry - you can piggyback on Charmaine's. - Gunner

• Language: English
• Publisher: Xlibris US
• Release date: Jul 30, 2015
• ISBN: 9781503585911

Charmaine Zankowicz

Charmaine is a real-life certified occupational therapist and soul survivor of multiple sclerosis. Her favorite pastimes are being with her amazingly upbeat husband and three gregarious children. She loves reading, working, writing, and praying. Ms. Zankowicz, otherwise known as Trev, has been married for twenty-two years and has lived with MS both personally and professionally—for all those years, imperfectly. She resides in the land of milk and honey and loves a good cup of tea with friends. Trev looks forward to journeying on the crooked path set before her with whatever crutch will get her through.

Book preview

1

ADJUSTING

A nother Saturday. Not such a great day. I guess I expect weekends to be trending to include more excitement than loneliness. Weekday loneliness is less heavy than weekend loneliness. The regular workweek is over and most people embrace the days on the weekend. Not me. This is when I think about what it means to cease striving. Mostly because I have to reframe how my weekends look. I leave things undone through the week so I can look busy on the weekends. The laundry overflows, the bathrooms need scrubbing, and the muffins need mixing. But it’s not as much fun when no one is around. Through the week, the hours pass swiftly, even though my pace is that of a ninety-five-year-old in a forty-five-year-old body.

So sometimes, on the weekends, I lose my way, and I try to search for joy. I’ve watched Gene Bailey’s gospel YouTube flash mob video over and over again to prime my mood so that when my family returns home from regular weekend errands, I do not suck the joy out of them. This is when I want to seek refuge in my turtle shell. My shell is not impenetrable; it’s soft and fragile. It’s woven and braided the same delicate way women all over the world knit hats for sick babies and slippers for frail feet.

The following twenty years of journal entries venting through a chronic illness are not meant to suck the joy from you, my reader, but to cushion your suffering so you know you are not alone. The words are not toxic, but real and no longer protected. My voice has surfaced after years of stuffing the struggles. I have MS. It’s a progressive disease at its root. I have relapsing, remitting MS. That simply means symptoms get worse and then get better. The relapses leave damage and don’t always fully heal themselves. It is a disease that takes a young life and makes one old. It is a disease without a cure. It is a disease of hopelessness, of disappointment, of a crushing reality that may not lift. Mostly, it calls for a life decision to choose love and joy as default when reality may wish otherwise.

And it shall come to pass, that before they call, I will answer; and while they are yet speaking, I will hear. (Isaiah 65:24, KJV)

Dear reader, it is my hope that you see the immature new bride contrasted with the wiser, faithful middle-aged woman. I’ve used a present-day voice intermingled with my journaled twenty-, thirty-, and forty-year-old self. My voice carries on and interjects hindsight and insight in living a life of adjusting to health trials. I’m a little less cocky than the little girl preparing to be married, a little more graceful and inwardly and outwardly changed. Stick with me and visualize my head going in and out of my turtle shell of my chronic illness, from the reality of self-preservation, to the spiritual process of dying to self.

As Paul says in the New Testament 2 Corinthians 5:17, Therefore if any man [be] in Christ, he is a new creature: old things are passed away; behold all things are become new.

I am that new creature with a lot of crutches, the main one being my Lord.

2

YOU KNEW

Y ou knew my God, that I would ignore you my first twenty-five years, but that didn’t mean you would stop trying to woo me. The white picture Bible from my grandparents sits on my shelf, crayoned by little hands over the years, and beside it sits my grandfather’s Bible, which he could not read as he was illiterate. Side by side. At age thirteen I wore the pink confirmation dress that my parents bought for me. I felt beautiful with those French braids and a church full of well-wishers. But I didn’t really know You. Thankfully, You knew me. I loved being the vice president of the United Church youth group, but I was mad that I didn’t make president because I wasn’t a pimply-faced boy. It was me who pushed the limits for that group of teens in that unheated church basement. Chaperones beware: you knew not who you were up against!

When I started my first real job at the flower shop, you knew what you were doing by introducing me to traditionally churchy bosses, with a spunky religious lady as my manager. I’m thankful I was placed around godly people who acted like their faith was real. I Javexed the flower bins in a rush to end my shift at the flower store on time so I could hang out with friends. I even closed the store one Saturday and put the Back in 5 minutes sign out so my best friend and I could run to The Work Warehouse to buy jean jackets for the Boss concert at Exhibition Place. But You knew that too.

Oh, and then there was my first co-worker! Smiling, brilliant, wide-eyed joy-filled employee! Now there was something different about her. She was actually the first person who seemed Christ like to my sixteen-year-old self. There was something magical about her. Those were your early seeds—churchgoing religious folk—but I still needed more. I needed a distant cousin to come in and unconfuse my United Church and newly yoked Catholic mind. I needed both the United Church minister and barely-English-speaking Polish priest to press on during our wedding service, because I was starting to doubt both religious doctrines. Who was Jesus for all these people? I needed each of those mustard seeds to come into my life in human form—gently, calmly and willingly. I love looking back at how Jesus was wooing me; it’s so very clear now.

Becoming a mom really sealed the deal between Jesus and me. How could I have anything to do with this miracle of birthing another? Certainly, I was changed forever. Jesus is Lord of my life! Please enjoy these pages of transformation, and forgive me for being thickheaded and self-centered. May you not waste as much time as I did getting to the point where Jesus is Lord! For you created my inmost being; you knit me together in my mother’s womb (Ps. 139:13). Pick your yarn, don’t waste time; notice the gauge, color, texture, and feel; and submit to the woven threads of scripture and community. Don’t stay too long in your turtle shell.

3

CASTING ON (1992–)

September 1992

Dear Journal,

I received this journal from my sister Veronica for landing my first real job at the local hospital. Veronica is what I will call her in my journal because we lived on Archie comics growing up. What a dear, dear sister—so much more glamorous than I will ever be! What a week! I’m hoping to sleep soon; there is so much on my mind! The next thing to do is find an apartment. The one Zank and I want is on Cornerstone Road. It’s everything we want starting out together: sun streaming in, treadmills and a pool and easy access to the highway. The worst part is rationalizing it to everyone else! I know people want to help, but advice is tiresome when I’ve already thought everything out. Sure, money may be tight, but why live life so conservatively all the time? Boring! Zank and I are bright, mature adults and are so much in love. This apartment is just the answer. It feels right!

The mother-in-law situation is upsetting, and I know I’m going to have a tough time loosening the strings. I wonder about this mother-and-son relationship? I hope I don’t put my own sons through the same things Zank has had to deal with. A good moral base and all the love we can give them while teaching them responsibility will be my goal. Wow! So much stuff to think about! I just thank God Zank is the man he is. I’m so lucky! What a mate I have. I can’t wait until our wedding day!

We went shopping for Mom’s mother-of-the-bride dress. She prefers the sequined look. I find Mom is feeling less stricken about Gampy’s death. I feel peace about his passing. He was such a great grandfather.

My mind is so full of thoughts that it’s hard to get everything down. I don’t think I’ll make the Dean’s Honor Roll. I saw through the liquid paper on the secretary’s desk; it noted 9.4. I keep thinking back to that stupid C I received in Block 1 of first year in occupational therapy (OT). I’m pleased that I received two A’s; however, I would have loved to make Dean’s Honor. I guess I shouldn’t give up hope, but it will be a big disappointment as I’ll be one of the minorities not receiving Dean’s Honor. I go to school with such smart people! Well, I’ll have to wait and see.

I’m really tired this week. I need to schedule more time for myself. I would like to buy some new clothes, but I have to curb my spending. I like my new job—my first! I’m a little low on energy right now, but it will pick up. I have little or no interest in presenting my client’s case in psychiatric rounds, but heck, I have to. Both of my bosses will be good.

I think I’ll call this my real true-feelings journal and leave my thoughts uncensored. I hope if Zank wants to read it that he’ll understand it’s a good outlet, helps me stay honest, and will keep me from holding everything inside. Feelings, especially the true, raw ones, can be hard for others to read. One may want to distance self from real feelings; that’s why I don’t know if I’ll let Zank read this journal. Although it hardly seems fair as he has let me read his. I can just picture us sipping tea, looking at the stars and discussing life. I can also picture us getting ready for bed and cuddling and making love. I can’t wait—less than two months to marital bliss! Anyway, I believe this is quite enough for one night. I was going to work on my hodgepodge craft deer, but I may just watch TV instead! Night, night, Gampy. I miss you.

2014 Present Tweets: Twenty-Two Years Later Responding to the Past

#memories #imperfect #safeinshell I just gave my Gampy’s sweater away to Goodwill, as it had lost his smell. I miss him today more than ever. I miss the willow tree with the swing and taking a ride on the lawn mower. I miss naming his cows and then teasing Veronica that Rachel was on her dinner plate! He was the perfect grandfather. Quick to laugh, hardworking, loving to all he met. He loved soap on the rope and peas at every meal. He was big-bellied, and his laugh matched his size.

Now that my boys are reaching dating ages, I’ve decided I’ll be a lovely mother-in-law. I’ll wear running shoes and practical dress pants at their weddings. As for not giving up my boys gracefully, well, my true feelings will be shared with my friend Gunner who has two recently wed children. I doubt I will let them go too willingly!

I still have the mate of my dreams and the fact that he puts up with me everyday must make the heavens sing. Haven’t thrown anything at him since the frozen grape juice can to his head in the mid-’90s when he arrived