I will fight with you

“The only thing that could keep her alive is her will to live or a miracle”.

Those were the words of one doctor seven years ago during an extremely bad flare. Imagine being a loved one hearing such a hopeless pronouncement from someone you expect to give you a ray of hope.

Well guess what? She has had both. Today, April 21, 2018 marks the 10th anniversary since Shoy was diagnosed with Lupus, after months of testing and months of uncertainty. Last night, for an hour or two, I sat listening to Shoy recounting the story of her Lupus journey. As a husband, a listening ear is the least I could offer, yet it was agonizingly painful going through those painful memories with her.

Shoy spent the entire day yesterday experiencing waves of conflicting emotions, from moments of extreme sadness and loss, to moments of joy and celebration just for life. Many days we awake and go on with life, not even taking a moment to thank God for the blessings of life, to be grateful for the breath that eases through our nostrils, feeding our organs with life. But for Shoy, each day is a blessing.

Last night, she disclosed some aspects of her journey that she had never spoken about for the past 10 years. One such, was her friend Lisa. The week prior to her diagnosis, Shoy shared her hospital moments with another young lady who had been suffering with Lupus for at least two years. She was struggling, holding on to life by a single thread, even afraid to go to the bathroom alone. Although afraid to go to the bathroom herself, Shoy found the strength to accompany Lisa, and together they found comfort, despite the pain and the confusion. Then suddenly one morning, Lisa gave in, and Shoy looked on as the doctors drew the curtains, until they walked away, and she saw Lisa’s body wrapped in a blanket. Not long after, she witnessed her friend’s lifeless body being removed from the bed. Later, when the same bed was cleaned and fitted with new sheets, a new patient occupied it. All she wanted to do then was go home, because she realized that she had also replaced someone else in the bed she was laying in. Would she be next?

After months of unexplained illness and frustrations, after hospital admissions, ambulance rides, drips upon drips, pricks upon pricks and pain beyond the reach of medications, the diagnosis finally came: “You have Lupus”. The dreadful words seemed to have shattered her world as reality sunk in. She was just diagnosed with the same disease that took her friend’s life only two days earlier. She not only questioned God. She was furious with him after feeling like her faith had counted for naught. “God, how could you allow this to happen to me? This cannot be real. I cannot have Lupus.” This was followed by the next few months of daily struggles, going through one procedure after the next, drifting through many moments where she felt like she was living her last. She tells of one moment after being discharged from the hospital where she was in such a bad state that she woke up with her mom at her bedside praying and pleading with God and while she thought it was Monday, it was actually Wednesday. Two days had vanished and her pains were so great, her mind had not realized.

My words could never justifiably recount those moments of struggles, where the only source of strength was family and a few devoted friends who themselves, were struggling to come to terms with what was happening to their beloved, and how bleak her future appeared to be.

Today though, a full decade later, she fights to contain those emotions because while this journey has had too many moments that had her struggling to be hopeful, there were so many blessing through it all. Her sisters, Sashoié, Shantayaé, Jodi-Kaye and Beth-Ann and her parents, Janet and Neville Grant, shared the struggles and the pains and they were the hope, the strength and the laughter that would, at least for moments, allow her to forget the pain. And then there are those precious, loyal friends whose love and support have been like a refreshing spring. These individuals are not even aware of how much they have helped in giving her a reason to fight, especially on the most difficult of days.

As a husband, no day is easy. It is truly heart-wrenching to watch my wife combat Lupus every single day, to try to give her some of my strength when all of hers has been used up in bouts of vomiting, to not even be able to touch her because even her skin hurts, to witness the struggles to sleep at night, the fight to get out of bed in the morning, the swellings and groans from painful joints and muscles, and the list goes on and on. It is hard watching her even in those seemingly good moments, being fully aware that under the bright, beautiful smile, under the passion and effort she puts into helping her patients daily, under the laughter and the sassiness, under the slaying and the thriving, there is always pain, always frustration and always tiredness from having to deal with this dreadful disease. But she does it every single day.

As I listened to her, I bent my head backwards, looking up at the ceiling, the only way to hide my tears. I need to be strong. Strong for her on the outside while my heart pumps tears instead of blood. I am gravely unable to explain how painful this journey is, yet it has taught me so much, and through her life, I have found great value, enough to be thankful for every minute, every second that I live, whether in pain or pain-free. And even now, I think of her fellow Lupies, who somehow, despite having to deal with issues that no one would wish for, are among the most vibrant, colourful and inspiring people I know.

Sometimes I wonder why God allows the best people to go through such trials, and though I do not know the answer, I know that He is using their lives to inspire others. If Lupus has not broken them, if Lupus has not stopped them, if Lupus has not taken their joy, then I will not let my adversities take mine. I salute my wife, I salute all those who struggle daily with Lupus – you are all my constant inspiration. Keep on fighting, keep on smiling, keep on impressing, and keep on allowing your lives to make a difference in this world. God has a special love for people like you.

Together, Shoy, we will win the fight against lupus – I stand with you!

Ten years down and a lifetime to go, my love – I will fight with you!

Ashley Massicotte ©

April 21, 2018