(A still from Edward Scissorhands* showing Burton’s vision of suburbia, source)
Picture it if you will. A Saturday night in a small town. A nondescript suburban house. Cookie-cutter brick. A collection of impractical right angles. The token attempt to differentiate with the others on the street. A swathe of green lawn. Wind blown plants set out in a rock covered garden bed. Unremarkable to the dozens that surround. Inside. A small beige ensuite. Coffee-coloured tiles. Glass and chrome. A large mirror sits on the wall, reflecting the scene unfolding before it. A couple. The man standing before the woman. He in shorts and t-shirt. She in red dress and grey stockings. Something about his stance suggests a mixture of concern and uncertainty. Something about her stillness jars.
She is sitting, bent in half on the hard toilet lid. Chest pressed to knees. The lights above beat down on the tangle of black hair on the back of her head. Pain-sweat sticks random hairs to the nape of her neck. She catches her breath with each heightened burst of pain. Cold smooth tiles anchor her feet to reality. She holds tightly onto that feeling, focussing on the texture below her heals. Overly controlled breathing, a futile attempt to control the situation. She continues to fight long after the battle is lost. Pain, misery, and lost dignity are thick in the air.
He is murmuring soft words of encouragement and comfort. Concern flickers on his face as his composure slips. Gone as fast as it appeared. Calm replacing worry.
She is unable to unbend, stomach pains increase. Partial paralysis of your digestive system is not what good times are made off.
He gently lifts her weak leg. Holding her trembling foot against his thigh as he slowly unrolls resisting compression stockings down her pasty, wasted legs. First the right, then the left. Her legs dropping to the floor. Each foot making a small smacking sound as they hit the floor.
She hunches over as he helps her take off her dress. A reflexive shudder with each attempt to unbutton and unzip. A gasp of pain. Their uncoordinated, combined efforts, would be funny, except for the ever present pain. A moment of fear intertwined with a wave of relief, as the fabric gets caught and is suddenly released as he gently pulls it over her head.
He places her pajamas, the soft, old, comfortable pair, kept just for days like this, on the marbled bathroom bench. The only height that she can reach from her bent position. He steps aside so she can have a moment of independence to dress herself. But not too far. He stands ready in case she needs help.
She emerges. Clothes rumpled and askew, but all parts covered enough. She stumbles, bent in half to the bed. Curling up in sheets as pale as her flesh. Pain and misery eclipsing the world around her.
He helps her sit up slightly at the edge of the bed. A contorted mess of distressed flesh. A fragile dam of tears.
He gently holds her shoulder so she doesn't tumble from the edge of the bed. Handing her the cocktail of pills one after the other. Waiting patiently for her extended hand to indicate she is ready for the next. Gentle words, encouraging, barely heard, between pain and concentration. But the feeling, the emotion behind the words, soak into her.
Shaking hands bring the glass of water to her mouth. A small moment of panic as a pill starts to stick. A small moment of relief as it manages to go down. A cycle repeated for each. Big, small, pill, capsule, an eclectic mixture of sizes and colours. Trying to swallow, when your limbs and body are at awkward compressed angles is not for the faint of heart.
Him, quite unwavering support. A rock. Her rock. Anchoring her tonight, and all the other nights that have become part of the pattern of their lives.
She retreats, shrinking, back down into the bed. Exhausted. Pain, always pain. Spiking and slowly reducing. But always pain. Tears held back by shear will and the strength that stands next to the bed. The strength who has stood next to this bed more times than they can count. The strength that has stood in waiting rooms, in hospitals, in clinics, room after room after room, each step of the way.
He covers her with the sheets. Gentleness out of keeping with what others see, but so familiar to her. He moves quietly out of the room. Turning off the light. Closing the door softly. A quick parting word to let her know he is close by if she should need anything.
She radiates unspoken gratitude for the presence beyond the door. She knows she can do it. That it'll be alright. Because of that presence beyond the door. The super power that is love, flows through the door to cradle her weakened flesh. And she can disappear into crumpled sheets and broken sleep as exhaustion finally wins over pain.
Another Saturday night done and dusted. A moment of greatness. In an unremarkable house. On an unremarkable street.
Love isn't grand gestures. It's not choreographed flash mobs. Diamonds, or dozens of roses.
It's quiet moments on Saturday nights in the tiny coffee-coloured ensuites, of everyday brick houses. It's a steady, gentle presence in the midst of pain and illness. It's the hand that holds another's when they sleep. Transferring strength and comfort in equal measures.
It doesn't shout. But is more powerful for the whisper.
*Mr Grumpy took me to see Edward Scissorhands for our first date way back in 1991. I knew he was keeper right away.
wow. just, wow.ReplyDelete
Thanks Anon. :)Delete
So moving and so brave.ReplyDelete
Thanks Lesley xxDelete
wow, this is so beautifully written and so true.ReplyDelete
might have cried. just a lil bit.
Thanks Anon. I'm sure it was just something in your eye ;)Delete
I loved this. What strength there is in your marriage. Everyone deserves this sort of love.ReplyDelete
Thanks Carly. Nothing like a really rough weekend to really crystalise things. Makes me realise how lucky I am. :)Delete
gorgeous writing. xxReplyDelete
Thanks Bianca. :)Delete
This is an incredible post Michelle, you capture the raw emotion so well. Your husband sounds like an amazing strength for you.ReplyDelete
He is Emma. Couldn't do it without him. :)Delete
Thank you for sharing xxx
Thanks Lana. :)Delete
This. Was. AMAZING. I never thought that such a horrific personal experience could be so beautifully put into words. I am so grateful that you have Mr. Grumpy to support and love you through it all. These kind of nights were the reason my ex gave me as to why he couldn't be with me anymore. I was very upfront with how bad things can get with my fiance and he is still here and wants to always be there by my side. I hope that many years from now I can still say the same. I envy what you have and strive to be that strong in my relationship.ReplyDelete
Very sorry you had a rough night but very glad you have such love to see you through. More love coming your way! xo
Thanks Portia. We've known each other wince we were 17 and 18, 23yrs together, 20 married, 2 kids and 8 year illness. He's great when I'm really ill and I can't imagine having anyone else by my side when things get rough. I also know he'll go into bat for me when I'm getting dicked around, which is half the battle. I am so happy you have your fiance now. I wish all of us could have someone who would just be there for us xxDelete
Thanks for the gift of your prose... How delightful to read as. I am popping midodrine and balancing between that prodromal feeling of.. oh no I am going to faint lying down and my reasurring voice that says .. no this will pass, I will be okay soon...ReplyDelete
You shoukd write romance novels for the dysautonomics out here... I am laughing at my self, the low bp is giving me word finding problems... I couldn't remember the what my illness was called..
You a big blessing to so many simple people who sit on that line between being upright and a faint...
You are loved anyway you slice it...
Thank you Corrine. I think our romance is very different than most of the mainstream depictions. I mean I wouldn't say no to a blue Tiffany's box, but in reality the moment like that and last night in the ER where he just held my hand or rubbed my back are far more precious. xxDelete
I'm so glad you have someone to be there for you who obviously is a blessing and a rock of compassion. I can tell you that stumbling down this road we have been placed on totally alone is a cold and lonely journey. Hug him and never let him go. The post was beautifully written Ruby Slippers.ReplyDelete
So many are alone in this and it breaks my heart. Others don't realise the pain, fear and loneliness that accompanies sickness. And sometimes those with a partner are even more alone for their presence. I want all of us to have someone who lets them know they care and can hand over the role of strength even for a little while. xxDelete
So true, Michelle. I wish we could somehow send you hugs across the oceans, but at least we know you are in good hands. Thank you for writing this.ReplyDelete
Thanks. I am in good hands. Hands I'm really grateful for. :)Delete
Michelle...this disease has taken my teeth, my dignity, my career, often my happiness(but not my joy, thank you Lord), my hobbies, relationships, but it has NOT taken my marriage. Praise God, I can so relate to this. Its the little things, that our spouses learn, and do, seemingly small but so big and wonderful and living. Thank you for sharing this.ReplyDelete
I think we've been indoctrinated to think that it's big showy expressions of love that matter, but you're so right it's the little things. The tiny acts that show they care, that they listen, that they know you and that you matter. That they are still there, mind, body and soul when it gets tough.Delete
I am reading this for first time tonight. And as I lay in bed, I am propped up by pillows my husband placed behind me and drinking the Pedialyte that he was kind enough to run out and purchase. We should be out to dinner this evening for my father's birthday, but I am too weak to make it. Instead, my husband took off work early to care for me, to help me to the bathroom because I'm too dizzy today, and to be available to hold back my hair as I vomit yet again. It's not a glamorous love, you're right. But it's real and strong. Thanks for your eloquence and vulnerability.ReplyDelete
There is no one that reads this that isn't crushing on Mr Grumpy just a little bit :P But seriously, beautifully written as always xxReplyDelete
Hi Michelle, I'm incredibly sorry you have to endure so much. This was so beautifully written that I was moved to tears many times. I had to blink away my tears and swallow the lump in my throat before I could read on. Thankyou for your bravely and immense strength in writing and sharing this. It amazes me that you so perfectly put into words what I cannot even begin to express. You always manage to make me feel less alone with this illness and I wanted to thankyou for that gift <3ReplyDelete
I was weeping by the time I finished this. I don't have one of those partners. I have another kind. I'm so glad that you have someone who helps you feel not totally alone in all this. I've been nutting over for years whether to get a dog, again. Family had almost succeeded in talking me out of it -- too much trouble, too expensive (vet bills etc.) but I am so alone during the worst days, and desolate and, often desperate, during those sleepless pain-filled nights. And I remember nights before this illness hit hard and I had a dog and how she would keep me company through the worst of it all.ReplyDelete
I feel that every rght has been stripped from me by nature of this illness. There is no one to speak for me. When you are chronically ill, one of the things you seem to lose is social validity. Nothing you say is not taken with a grain of salt. Because after all, you are not a fully functioning participating member of the workforce. You are not a childminding grandma. You are not a sister who can ever again be relied upon in crisis (although heavens -- you would think all those years you were the sister to go to when in crisis would count for something) so slowly, you get forgotten. And you start to talk about how bad you feel, both hoping to be understood and as a way of apology. But no one wants to hear. Not even a doctor.
For example: Last week you tell the doctor that Zofran is working anymore for the nausea. He shrugs and says that it doesn't come any better than Zofran and you are offered no alternative. So you leave, wondering how, when the next migraine strikes -- in the next minute, hour or day (it won't be 'week' because they come more frequently than that and last a great many days) -- you are going to be able to be able to bear the sick feeling that makes the migraine pain so much worse. Just one example.
I don't have anyone to speak for me. My partner was worn out and overwhelmed in the first couple of years of the appearance of this illness. He had a number of doctors trips in him and he did about half a dozen trips to ED with me. But that stopped. Six years ago, experiencing anaphylaxis and knowing it, the best that I could arrange was a drop off at ED courtesy of a sister who continued on to take her young son to school (as she needed to and should do). At that moment, the realization I was alone with this crappy fucking illness.
So, I will get my dog and be damned anyone that finds fault with me. They aren't living my life, they don't get to tell me how I should live mine, anymore.
Michelle, I've let this go on and on because I needed to speak out to someone. I am embarrassed by the length of this guts spill. You probably will decide not to publish this and I think you may be right in doing so. I don't know anymore what is right. I have lost my sense of self. I don't know what's appropriate or not anymore. My body spills over. And my emotions spill over. I never feel 'right.' I always feel 'wrong.' But I needed to feel heard.