My best friend has Fibromyalgia, which is getting steadily worse as her doctors seem to be giving up on her. There's been a lot of talk in the Fatosphere about marginalization of ill or differently abled fat people in the quest for acceptance for the "good fatties". All that does is ignore that thin line of sheer chance that seperates the currently abled, with all our privilege, from a state of otherness. If we leave anyone behind, we doom our future selves to be left behind in turn.
My friend wrote this as a way of coping with the changes she's had to make in her life because of her illness. She said she was "getting her tears out on paper". I asked her if I could post it here as a guest blog, because I think it says something we all need to hear. -Jo
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*The Window.*
I look out the window and I see her dancing. She’s happy and she is free. She moves with such feeling. There’s a fire she dances around. It sparks her soul and it makes her feel alive. She reaches for the fire. I watch her dancing with the fire as if they are one. You can see how happy she is as you see the fire move around her body.
She’s walking on the beach in the sand. The deep sand engulfs her feet. The sand feels warm and makes her want to run and play in the water. The water is beautiful. Just as she is. The high wave crashes against her body. She loves how the waves hit her with such force. You can tell how much she loves to fight the waves. It’s a silly game they play together. Will she fall and let the wave win? Does the wave really win if she falls? It’s really the game they play together that makes them both winners. Her free to stand up against the wave and the water free to create the wave. There are no losers.
I watch her walking through a forest. Picking up little trinkets of herbs and twigs as she goes. You can tell she can hear the trees and the trees love to talk to her. She approaches a steep hill where she sees some beautiful flowers she wants to pick. She climbs the hill with ease. She can smell the flowers even before she reaches the top. Bending over to pick the flowers, she smells each one as she makes a beautiful natural bouquet to bring home. She didn’t realize how high the hill was till she reached the top. From the top she looks out and sees the vastness of Lake Michigan. She watches the waves. She sees the forest below her. She sits at the top of the hill and watches the sun set. One of her very favorite things to do; watching a sunset from high places and beaches. Nothing is more beautiful.
She runs down the hill. Running is so freeing. Feeling the wind in her hair. It whispers to her. It twirls around her as if it wraps its arms around to embrace her.
I see her laying flat on the ground. A clear blue day. Just enough fluffy white clouds to gaze at. She lies there and she watches each cloud as it slowly passes and changes. She looks to see what she can in the clouds. A mighty dragon, A phoenix, a small bird, a fish and a butterfly. All from the same group of clouds. She is able to get up with such ease. Dandelions everywhere. She picks them and pops the head off for fun. Thanking each one as she goes for giving her such joy in there splendid color. The way they glow on her skin and eyes.
She walks up to her little girl and picks her up as if she was as light as a feather. They dance around in the dandelions. Her child in her arms. Giggling and playing. Ring around the rosies, pocket full of posies, ashes, ashes, we all fall down. They do this over and over. Never feeling exhausted. No pain, just joy.
Its near Christmas, I’m watching her create! Wonderful gifts made from balls of yarn and love. She is crocheting the most beautiful afghan. The colors just jump right out at her. Oh, how she loves colors. They make her feel alive inside. The afghan is going to keep someone warm and make them happy. Something that can be passed down to the next generations perhaps. Oh! I see slippers. They look so warm. She loves to make these slippers for her friends and family. Look, she made her son another warm hat. Her sister a pretty doily to put on her wedding table.
She reaches for a paint brush. The strokes of the brush make her feel so free. Nothing can take her places like color can. She turns on the CD player and she dances around as she puts paint on a canvas. So much ease in her dance and her brush stroke. The color gathers into a beautiful painting that she can either hang her self or pass on as a beautiful gift. She loves to create gifts. She loves to create…
No one is home. She is all alone. She is skipping and dancing through the house as she sings to really loud music. She moves with ease no care in the world while she dances and sings.
She sees her husband. She embraces him. She wraps around him and pushes him onto the bed. She sits on top of him and tells him how much she loves him. She leans down and lays her head on his chest. He embraces her and the embrace turns into a moment that will last long into the night.
I’m still looking at her through the window as the window slowly changes to a mirror. I see my own reflection. I take in a deep breath and sigh. Realizing I was merely watching who I used to be. Watching all the things I long for and can no longer do. The days before pain. The days before the days before. I want them back! I’m angry they are gone. I can’t do any one of those things anymore without pain. The things that give me the most joy cause me the most pain. Simple things like lying in the grass to watch the clouds. Climbing a hill, making my children gifts, embracing my husband with a long night embrace. All seem out of my reach.
I sat here today and asked myself why? Why are you so sad? Why do you feel so alone? A burden, a failure and these words flowed from my pen. I am not a writer for sure, but I want others to understand why even though I look healthy and normal on the outside, healthy and happy inside, I’m breaking in ways that have no words. I’m broken and I don’t know how to fix me. I don’t have a day with out pain. I can barely recall what its like to not be in pain. I would love so much to do what I could once do.
I do not want your pity. I’m blessed to have wonderful people in my life that bring me joy in other ways. I do not want you to share my pain. I just wanted to share this with you so perhaps in ways I can not express to you in spoken word, you would maybe understand why sometimes I may be distant, cranky, and sad. Why sometimes I don’t want to do things with you. I don’t want to hold you back.
So please never feel like you can’t go on with your life with out me. Never stop being you. Enjoy what you have. Freedom of movement. Freedom of movement is a terrible thing to take for granted. Don’t waste it. Dance when you can dance. Climb heights you can look off of. Create things with your hands you can pass on to others. Embrace those you love for long nights. Live a dream you have now. Don’t put it off till tomorrow. Because tomorrow your body my not allow you that grace.
Wendy Needham
September 12, 2009
Sit to Stand is important
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Washington Post has reminders of how to strengthen muscles as you age,
including the sit-to-stand exercises I wrote about in 2009.
I generated a Washingt...
11 months ago
4 comments:
Thank you so much for sharing this! Beautifully written and something that needed to be out there to be read. Wendy has a deceptively simple but powerful writing style. I hope it is not too painful for her to continue to do so.
I wonder if you would pass my email address on to Wendy.Mitch1066@gmail.com
i also have fibromyalgia and understand completely the stages of grief that she is going through.
My weight issues are interwined with my limited motion due to fibro and the meds that are given to "treat"this complex and disabling illness.
Michelle Jadaa
Jo thank you for your kinds words. And thank you for the honor of posting my writing. I didn't as you know write it to impress anyone. But to get my tears out on paper. To have something I could share with my friends and my family so they might hopefully understand more what I go through etc...
I love you!
She described me. And it brought tears to my eyes. I have fibro and rheumatoid arthritis (and depression, which has gotten worse, strangely enough, as my RA and fibro have) and days like today, when I can't pick up my 2 year old, days when it hurts to even /help him up the stairs/... yeah. That's it in a nutshell. And I never know when those days will come.
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