A few weeks after my mom lost her life to scleroderma in 2009, I was on my lunch break in Steveston, slurping a piping hot soup at Alegria Cafe. My return to work had been difficult; I welcomed the distraction and the normalcy of it, but was always on guard for the tears that came out of nowhere in the middle of a speech therapy session. That particular Friday, I was feeling a little more settled in my routine as I breathed in the aroma of the soups and paninis being enjoyed around me. I let my mind relax and my eyes wander.
I glanced over at the bulletin board on the wall opposite to where I sat and saw it there, in glaring letters, and my breath caught in my throat. ‘June is Scleroderma Awareness Month’, it announced. I finished my soup, slowly, avoiding the inevitable walk past the board on my way out when I’d feel compelled to stop and read. When I did, I read that there was some sort of event being held to raise funds and awareness for this auto-immune disease for which there is no known cause and no known cure.
It was the first time I’d been exposed to the word scleroderma since it claimed my mother’s life. And it was a punch in the gut.
It’s been 7 years since my mom died and although I’ve blogged about her condition since then (mostly on my old blog), I have never marked Scleroderma Awareness Month in any sort of way. Because I hate it. I hate this disease. It snuck in the back door of my family home when we weren’t looking and settled in my mom’s internal organs, leaving us to question for months what was wrong with her. Why couldn’t she breathe well? Why did she have these coughing fits? Why was she unable to keep down her food? It wasn’t until it presented itself on her skin in the form of discolouration and tightness that a doctor would request a skin biopsy and the diagnosis would be presented.
I remember every bit of this disease, even though I don’t want to.
I remember the loss of function, the alienation, the depression, the clinging to faith. I remember the grief that started years before she died. I remember the moment she told me what the doctor said. I remember her fingers, her eyes, her feet, her shuffle. I remember her pain. I remember her hope. I remember the blood tests and lung tests. I remember telling her she would be a grandmother in the midst of all this. I remember becoming depressed myself and my mother, ravaged by this disease, would be comforting ME. Reminding ME that God is always with us. Reminding ME that there are people so much more worse off than she.
I remember her walking and then shuffling and then in a wheelchair. I remember her daily prayers, never missed. I remember her hugs, large and encompassing, then thin and bony and frail.
I remember learning that my mom’s form was really aggressive.
I remember being filled with rage.
And when she died, I only wanted to remember her, the way she was before. I didn’t want to talk about scleroderma. I didn’t want to acknowledge it with a fundraiser or by opening up to people about this awful disease.
Because I remember scleroderma, but I sure don’t want to remind it about me or anyone else I love. I guess I always thought if I just forgot it happened it would stay out of my life.
But the other day I read an article that someone tweeted out about her mother-in-law passing away after living with scleroderma for 25 years (yes, you can live with it for a long time) and it triggered something inside me. It made me realize that I can choose to ignore it, but not everyone can.
There are still people living with tissue tightness, digestive issues, respiratory issues, mobility issues. And often they live in a world in which nobody gets it. Nobody understands what they’re going through. The same can be said about cancer patients – however, everyone has heard of cancer. When you tell someone, “My mom has scleroderma” they will likely look at you blankly. Then you try to tell them all the details but…it’s not cancer, so it can’t be that bad.
But it is. Even the palliative care doctor told me so. “There are things worse than cancer,” he said quietly when I asked him in his office how long my mom had to live.
I’m not telling you this to feel sorry for me or my mom or the other warriors who live daily with this chronic condition. I’m suggesting you learn about it, because even though we were told it affects 1 in 100,000 people you may still come across someone who lives with it.
So, after 7 years I am acknowledging that June is Scleroderma Awareness Month. I am thinking of the families affected and sending love and prayers for quality of life.
The one thing scleroderma did not, and could not, take away from my mom was her faith in a Higher Power. That unshakeable faith that she passed down to me has been one of my greatest gifts.
I love you, Mom. I remember. You are never forgotten.