The Face of MS

I anxiously walked towards the sound of my family’s conversation filtering from my sister Janny’s hospital room.  Each step I took revealed another family member from around the corner, all surrounding Janny’s bed. In our family, we never set a time to meet. We just instinctually know and manage to congregate at the same time…one large circle of supportive chaotic love. If one sister is missing, she is there in spirit through texts or phone calls of concern and solidarity.

Janny’s eyes met mine, and our smiles reached right to our eyes. She opened her arms wide for a hug and I drank in her affection with a strong hug hoping to transfer all my support and love within it.

She was admitted to the U of A Hospital after suffering another bad MS attack. Even though she’s been living with MS for 20 years, we as a family haven’t quite become accustomed to the devastating effects MS takes on our Janny each time an attack of this magnitude hits. Yet we have.  It’s all so difficult to articulate and sort through in thought. This is why I seek clarity and solace within writing.

MS has proven to be a slow and methodical disease as it chips away at my sister’s ability to live the way she wants to, the way she deserves to. The devastation comes and goes in waves, each time taking a little more of her capabilities, awareness, and spirit before settling into a steadfast state. And then out of nowhere, one big attack knocking her down and leaving her vulnerable, confused, disoriented, limited.  MS is a disease that is a different beast for each person it afflicts. It is unpredictable and relentless.

As I watched my sister staring at the clock while we visited, I was taken back to a memory from years ago when I hosted thanksgiving (or perhaps it was Easter) which was the last time I recall her having a bad attack. I ran around my kitchen as I hurriedly prepared for company at our new-to-us acreage. I was excited when I looked out my window to see them pull into the yard. My excitement washed away into a sad revelation as I watched her needing the aid of a walker for the first time. Tears streamed down my face as I watched my brother-in-law take the walker out of the back of the vehicle and get it ready for her. She wore an intense, determined expression as she walked to my house. The tears flowed not because I felt sorry for her but rather because I admired her tenacity and strong will. She amazed me and humbled me. I was proud of the Grace she displayed as she coped with all the horrible changes happening as her body betrayed her heart.

The other night as we huddled around her bed making small talk, and her devoted hubby gently swept a stray hair away from her eyes…I remembered her. I remembered who she was and who she is, because both are important.

How often have I walked by a soul whose body has forsaken them without being aware that they are an evolved soul through their disease? At one time, they must have expected good health like a sunrise…just as I do. Who were they before and who are they now? Both beautiful souls deserve respect, understanding and compassion.

How often have I so selfishly picked apart the areas of my body that I want to change without feeling deep appreciation that these legs of mine work? Forget the egocentric vanity of the aesthetics and embrace the beautifully complicated functionality of the healthy human body with sincere gratitude. I can run, jump, walk wherever and when I choose.

It’s all so hard to articulate now within my longing for my sister to have her health. My track-star sister. I mourn for the vitality she has lost to this disease.  There’s a part of me that is also thankful that the deep seeded anger she so justifiably felt years ago gave way to a loss of awareness within her mind as MS attacked vital parts of the brain which comprehends those types of things. I feel guilty even typing that. I want you to understand how much of a blessing it was and is to finally see her smile and laugh again even though she had every reason to wake up daily with anger ranging within her soul.

So these past few weeks as she’s recovering I have spent time remembering her then and admiring her now. I love her like I love my own children.

Janice2000 web
Janice, 2000

I remembered my sister’s zest for life…the way she used to pace the kitchen while she talked because she couldn’t sit still for a second. She would walk or run places rather than drive.

The way she used to look you straight in the eye when she talked or listened as you talked, 100% genuinely present with the desire to know you better.

The handwritten notes she mailed me (and many others) full of hopes she dreamed for me, for her family, for others. She prayed for me at a time I had no direction and was struggling.

This is Janny’s heart encapsulated within a letter, written in 1992 before her diagnosis. She poured her heart into this letter, asked forgiveness when she didn’t need to. I was an immature teenager, and she always challenged me within my bad behaviour to be the best I could be. That’s what you do when you love someone, you advise with love in order for the other to grow and evolve. There are no words adequate enough to express my gratitude for the impact she had and continues to have on my life.

Janice 1Janice 2 web

She prayed for strangers. She organized meals for those in need. She loved so intensely.

The way she held her boys hands as they walked and ran after them as they played. She was very active in their lives, volunteering at their schools any chance she got. She was and is proud of them. She was and is a devoted wife. Side by side they have shared all of life’s adversity.  I have a memory from when I was a little girl of the two of them giggling together during one of their visits. Janny buried her head into his shoulder and whispered something and the two of them just broke out into laughter that was so light-hearted and free yet intimate…I felt odd invading their moment. I have no idea why this memory is so vivid, I couldn’t have been more than 8-10 years old at the time.

2004

The way she worshipped in church, arms outstretched, eyes closed singing with all her might. She worshipped God with all of her heart. She served those in need as well, organizing meals for the sick. She took the time to reach out in a personal way to those she came in contact with.

I remembered her stubborn streak, the one that made her family have to hide the car keys when she was first told she couldn’t drive. She was fiercely independent and losing her license was very hard for her to cope with. I recall many times looking out my kitchen window and watching her drive up at mock-chicken, and defiantly getting out of her van walking through a cloud of dust. I would open the door with a disapproving look and she would tell me to shush up and make her a coffee.

She loved people. She still loves people. She loves being in the middle of the most animated of conversations. She’ll put her two bits in here and there and look down her nose over the top of her glasses when she doesn’t approve. She loves talking hockey and is a huge Oiler’s fan no matter if they make the playoffs or not. 😉 She puts all of her being into each gregarious laugh, and she laughs often (usually followed by a tap of the back of her hand to your shoulder). Her face lights up when she greets each family member. Whenever I visit, she always yells across the room “Chris! Come over here and give me a hug!” and she sure does pour her heart into those hugs. She takes the time to talk to each of my kids and asks how they are doing. She is all about family, always has been and always will be.

Jan, Beenie and Chrissy
Me, Janny, and Brenda (3 of the 6 sisters) March 22, 2015

This is the face of MS the way I’ve experienced it within our family love story. The complexity of the mourning for all that is lost and the gratitude for all that still remains. The ever-changing and evolving face as MS continues to invade. You would be hard pressed to find a family that doesn’t understand the face of a different type of disease, but this one is ours to watch, feel, experience with sadness and I pray there’s a cure someday soon. For my sister and for anyone who’s been touched by MS.  Hope is what we crave.

I encourage you to reach out to those you love and express your gratitude for their impact within your life.

In the words of my sister “Remember, don’t keep anything bottled up inside of you”.

I wish for you health, happiness, and a humble heart as you grow in life. And most importantly, I wish for you awareness of your blessings and a united family standing tall and proud within LOVE as you tackle adversity.

I love you Janny.

From my heart to yours,

Christine

16 thoughts on “The Face of MS

  1. Christine, thank you for sharing your sister’s story and how you both manage to gain strength and inspirarion amidst adversity. We can choose to respond with love, hope, faith and grace in whatever challenges we face. Your stories remind me of that and for that I am truly grateful.

  2. This blog brought me to tears…I love you Christine and your family. Your words always seem to help people understand & to also remind them how life shouldn’t be taken for granted. To embrace the ones around us & to be thankful for everything we have.

  3. Having been through our own journey with MS and ALS, your wonderful tribute to your sister is heartfelt & deeply moving. She sounds like an amazing woman, and what a special bond & memories you have. I enjoyed reading this touching post.

  4. It is a very sad story and makes us who are healthy realize how lucky we are your sister is an angel down here on earth showing us a message of to learn to appreciate what we have and not to be so selfish of ourselves. You and your families have been strong and other people should take heed to this. We must learn to respect ,love and most of all forgive one another IT is situations like this will bring people together. You all are fantastic people for all you have been through. Keep up the smiles and good faith…Mitch barr

  5. I’m a friend of Roxanne’s, she shared this on Facebook. This is such a beautifully written tribute. I may not know you personally but this brought me to tears–not from sadness, just the beauty of your family’s love. There are no “bad times,” there are just moments where we truly need and appreciate the love of those closest to us, to cherish it and see it for the amazing gift that it is.

  6. Beautiful tribute to your sister!! I know her sisters are all very important to her as she is to you! I admire you all for your strength & support! Keeping you in my prayers.

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