There have been many moments in these last few months that created flashbacks to when my mom was ill. First, just the unknown of the disease. There were days with her that we knew things were seriously not as they should be, but we didn’t have any answers. Exactly as I felt being turned away from emergency over and over. Spending days laying in bed, pondering and worrying for hours as to what was making me so fatigued and ill. And the days leading to my diagnosis.
Then once I was in the hospital and over and over again I was asked about my family health history, I would say my mom passed from Creutzfeldt-Jakob Disease. Some would have a blank look, others would nod in vague recollection and one of my favourite rheumatologists replied, “What’s with your family loving rare diseases?”
As the weight and muscle mass came off, I remember looking at my legs and seeing extreme definition of my shins. Just bone. And immediately I thought of my mom’s legs. She too became so thin, and I have specific memories of how her shins looked. When I looked down at my own legs, weakening each day, I saw her.
And then I remembered Vegas. Vegas was the last trip my mom took before her illness became more apparent a few months later. And I too, took in the sights of Vegas right before my symptoms worsened.
I have received such positive feedback about my attitude towards my situation and disease. And I take that from my mother as well. One of the last things she kept saying to her best friend was, “If you can’t laugh, what else can you do?” And I took those words, and held on tight and haven’t let go. (Even though I am crying as I write this now.) This is how I approach life. You need to find the humour in the hardest of times. It’s not to disrespect the seriousness of the illness. Or be in denial of my diagnosis. It’s to still find joy in my life. Focus on the positive. Laughing feels so gosh darn good. And when there are so many struggles each day, don’t you want to be able to laugh?
When recounting these similarities to one of my closest friends, I closed with, “There are so many things the same with me as when my mom was sick…but I’m not going to die yet.” And that’s my plan. (No offence mom – I want to be just like you in every other way.)