It’s been a haunting memory for life: watching my grandmother carefully and painstakingly try to hook her bra with swollen, nearly purple fingers. I can hear her sigh as she misses the hook yet again, I can see her turn the bra from back to front and try to look directly at what she was doing while singing my cousin and I a song or giving us instruction on where to find candy she had hidden in her top dresser drawer.
She looked crippled from wrist to fingertip. That is exactly how I remember her- swollen, claw like hands that just looked stretched beyond comprehension. Skin-tight and taught, the joints bent and curved.
She always took great care to talk to me while fighting with her hooks and buttons. She would look me in the eye and tell me a story, as if nothing were bothering her. Yet even then, when I couldn’t have been more than nine or ten, I knew she was hurting.
I look back now and realize the similarities. Her very round, rosy cheeks. The fingers she could not straighten. The endless hours of sitting next to her while she rested. My grandfather’s devotion to her, getting her whatever she wanted and needed despite years upon years of trials and tribulations, the reality of marriage.
A similarity in which I would normally find comfort sends chills down my spine. Similarities I hope will end soon. While I admire my grandmother, and even named my daughter after her…I need our stories to take different paths.
I found myself last night cooking dinner and talking to my own children. Trying not to let them see me wince as I cut chicken and breaded and baked. It might as well have been a hook, or a button. It might as well have been my grandmother and I in that kitchen. My round, rosy cheeks…my swollen, pained fingers, curled into a ‘c.’
I was her.
And when the kids left the room to play elsewhere, tears rolled freely down my face while I struggled to finish.
Grandma, I love you. I just can’t be like you. I will win where your doctor’s failed. And I will continue, where you left off. I hate that I now understand the pain and I hate how hard you must have tried to not show it to me. But I will take this genetic burden and lift it for us both, so that my granddaughter is immune and ignorant to what we’ve endured. This will end with me and we’ll be the only two who know. Her partner will not fret with the doctor over which experimental medication to try next. Her children won’t see her cringe as she tries to get out of bed. And she will not carry with her the vivid memories of simple tasks, like her grandmother trying to hook a bra. I wish you were here so that I may ask you your tricks in getting through the day. I wish you were here so that we may commiserate together over ailments and pain. But even more than that, I wish you were here so that I could help you hook that stupid hook, and you help me hook mine.
What a wonderful tribute, Erin. God Bless You with healing and freedom from this burden. You are an inspiration to so many. I pray for you every day.
My Aunt was that way…
We will find a way to carry on
huggs
Heartwrenching. ((hugs))
You just made me cry. *hugs* Erin.
When you ask my dad about his mother, he will talk about a woman who battled pain most of her life and was sometimes crippled by it. When I was diagnosed and truly suffering from rheumatoid arthritis (in my mid-30s), I couldn’t help but think of the tiny, bed-ridden old lady and how I would morph into her more quickly than I imagined. There were some very dark days around the time of my diagnosis when I could barely walk the stairs. Mornings I cried out in pain as I willed my sore, stiff hands to make a fist (it took days or weeks for me to realize that they were mostly useless until mid-day whether I did my little exercise or not).
With time and proper medication I have returned to a life that once seemed impossible to me. I wish you the same.
If your spirit were in charge of your body, you’d be healed already. But guess what? Your spirit is partly in charge of your body, so I predict success, and am rooting for you all the way, along with so many others. Thanks for reminding us that being brave doesn’t mean not being afraid.
Sad and beautiful 🙁
You are amazing. What a wonderful tribute to your grandmother.
*chills*
Just reading your post made me cry; I can’t imagine what it feels like to write it, much less live it. If your unflinching honesty and courage doesn’t get you through this, I don’t know what will. Keep on keepin’ on, Erin.
As usual, tears. I hate that you are going through this. Wish my grandma were around, she’d smack lupus upside the head for ya.
It is not lupus my family fights, but rheumatoid arthritis. My sister and my father are both bound in pain as they fight their very personal battles with this disease that has tormented my ancestors for years.
Everyday I wake up and pray that I won’t be joining them on this battlefield. I want so much more for my children than for them to have to see that struggle too.
I wish I could help Erin. But I admire you so and I know your children are blessed to have you whether they are witnessing your battle or not.
That was heart renching. Although I don’t know you, you and your family have been in my prayers. Political views don’t matter. People and families do.
No words. Just big ((((hugs)))). And hope that treatment will help you soon.
Touching post, beautifully written, echoing a sentiment many of us are finding as we age and begin to recognize painful syndromes, once just a part of our mother’s or father’s lives, creeping into our reality. I will look forward to reading more of your work.
You are so strong and brave in the face of everything.* Hugs*
you are inspiring in that you are in touch with your feelings and can face your challenges in the eye. My niece has Lupus. She doesn’t seem to be struggling on the outside. Both of her babies were born early, but they are healthy little girls now. I’m going to ask her about her illness and how she is feeling more often. You’ve shown me I needed to let her know I care. I hope you find relief and kick your Lupus in the butt.
Tears and hugs! Amazing post I can see your grandmother and feel her (and your) pain. xoxo
*hurting for you* Many prayers.
Perfect. This is really beautiful.
I’ve read this post several times. I keep saving it as unread and coming back to it thinking that I’d eventually find my words. My grandmother had rheumatoid arthritis. We grew up next door to her and my brother and I always helped her with all the small details in life…the little things she couldn’t do with her gnarled hands.
8 years ago I was diagnosed with RA. For the past 6 years, I have been either pregnant or riding pregnancy hormones that have kept me in remission. (We have a 6 yo, 4yo, 2yo and newborn.) The baby I just had is our last, and the doctors tell me that all my symptoms will probably all come back. And so this post makes me tear up, but also encourages me. There are new drugs, new therapies that she didn’t have available. But, just like you, I still wish she were here for me to talk to…how did she do it?
Thanks for sharing.
I can see her so clearly. I wish you had no reason to write this.
Very touching story.. (( hugs)) for you… thanks for
sharing…
We always see our grandparents as a good example in
marriage life. This is a great tribute to all grandparents.
I was teary eye..i know what you feel.
Erin,
You truly are an inspiration. I met you just a few weeks before this awful thing took hold and ravaged your tender body. I can still see your smiling face and stroppy ‘whatever’ attitude and I know that if anyone can climb a mountain then it is you.
Beat that BITCH.
xx
My grandmother had lupus too. I never met her – but I agree with you – I’m not officially diagnosed yet – I certainly have an autoimmune disorder with “lupus-like tendencies” – we will succeed so that granddaughters of the future won’t have these same memories!