After the muscle biopsy 12 years ago I could not walk at all. No one had any idea that the biopsy would have this affect. My leg just would not heal. I could not walk on it. I did not have any motorized scooters or wheelchairs and had no upper body strength to use a manual wheelchair so my husband carried me everywhere and his supposed 3 days off turned into weeks. The muscular dystrophy association bought me a wheelchair ramp and an electric scooter months later and I was finally able to get around and get back out in the world. I did not walk across my yard. I did not drive. I could not lift my right arm to wash my hair. The little things I could not do. I could not grip my toes. You have to grip your toes to wear flip flops. Did you know that? It’s true! I didn’t even have the strength to turn the handle bars on the motorized scooter.
Two years ago I made a choice to try and see what I could accomplish. They were not short term goals. I knew this would take a long time and I had to be very patient with the progress, if I made progress at all. At the time I could not lift my legs to walk at all if there was any pressure on them from clothing like jeans. So I started with the little things!
I worked on gripping a pencil with my toes a few days a week.
I worked on lifting my legs just a few times with jeans on (that is after I could even pull the jeans on which was a success all it’s own).
I worked on lifting my arm a little bit higher each week. I did all of this in my bed.
I worked on turning the steering wheel in the car without actually driving it.
Next I worked on walking a few steps while holding a pencil in my toes.
Next I worked on walking a few more steps with jeans on.
Next I worked on reaching my arm to my head.
Next I worked on driving the car up and down the driveway.
The little things.
Just little things.
Two years later I can drive the car 5 miles. I can walk with jeans on into a bathroom out at a restaurant. I can walk with flip flops to the mailbox and back. I can walk barefooted in the grass just far enough to do yoga and work on stretching my arms above my head. I can hold my camera up above my head with both arms for a few seconds to get a moon shot.
I cannot brag about beating my best squatting record or planking time or sprinting time but I can very humbly tell you that I can do the little things I never thought I would be able to do again. Some may never even be able to do these things. Some people can only use one finger and you know at this point in my life I can SO appreciate the value of that one finger! I appreciate the value in every little tiny thing that we can do.
When you see me out in my scooter you may not know all of the little things I have accomplished but there have been many. So many that the little things are the BIG things. Perspective is everything. When you see me…really see ME.
My family always called my husband a hero because he just kept on loving me. The abuse aspect was never discussed as to him being a hero for loving me through which I’d more give him a gold star for THAT because even though I am easy to love (!!!!), It is not easy living with someone who has a trauma history even if you are as super fabulous as I am 😊. But they never cared about the trauma part he was the hero for taking care of their daughter with a disability and staying married in spite of it all!!!
My husband was put up so high on a pedastal for loving with me, taking care of me, being married to me, supporting me, JUST BECAUSE OF MY DISEASE. I can understand putting him on a pedastal because he is a straight up awesome individual! Or because he loves animals, rescues people, rescues animals, loves his daughter, is admirable due to his values and his core and his spirit and his heart!!!! I adore him for who he is as a person. I adore him for how he loves me unconditionally. But he is NO hero because he has chosen to stay with me and love me after the diagnosis of a muscle disease. He is no hero because he lifts my scooter into the car, or carries me when I need to be carried (fortunately he is a beast of a man strong as an ox), or takes me to appointments, or does all of the things that I cannot like grocery shop ( even though he says he is thrilled I can no longer grocery shop because I was awful at it which is so so true!). He is quite very simply a good husband. And I am a good wife. And we have a good marriage. Disability is just a side note.
My family felt that his ability to love me with a muscle disease gave him an award for husband of the year and their hero and they never stopped telling me so or him.
My husband is a wonderful man. I am blessed beyond measure to have him in my life. He is my partner. He is my best friend. He is the love of my life. He is MY hero because I look up to him and admire him for thousands of reasons. Not because he chose to stay with me because I have a muscle disease. I’ve always said, ” He could have a perfectly healthy wife that is a total bitch! I think he’d rather have me!”
If my husband became ill would I become a hero for loving him still? If he were in an accident would I be lifted to a pedestal because I stood by his side? He is revered because he chose to keep loving his wife after a diagnosis? How absurd! My husband will always be my own personal hero. He did infact save my life! He saved me from a boyfriend that was sadistic. He gets to be my hero. But no one else’s hero just for…well it always seemed they were assuming I was just a burden that they were happy he took care of. You are not a hero because you stay, support, love, empathize. It just makes you a good person. I am also no burden. He has NEVER made me feel guilty for these things that I DID NOT CHOOSE.
What my parents neglected to ever say was to HIM, ” You are so lucky to have married such a wonderful wife!,” or, “SHE is my hero for overcoming and facing all of these obstacles and I am so glad you two are together!” He was never the lucky one. I was always the lucky one because someone dared to love me in ways they could not. Let me repeat that. Someone dared to love me in ways they could not.
A hero implies that I or they needed someone to save me. That someone was my savior and he was to be put on this grand pedestal for doing so. He does not get to be pat on the back for doing what a decent human being should be doing. I do appreciate everything he does for me but that is between a husband and a wife. I don’t need to be saved because I have a muscle disease. I need help that’s for darn sure. This world is NON-ACCESSIBLE. I need someone to open doors for me, help me with my scooter, drive me to appointments, pick up my prescriptions but I do NOT need a hero.
I am my own. I have made it through Lyme disease, a bone disease, a muscle disease, abuse, and more abuse, and more abuse, and I am still fighting. I am still persevering. I am still keeping my head up and trying to lift others. I have self worth, finally. I have chosen to save myself. My faith is always steadfast as well.
As for having a physical disability and PTSD I love to be loved for who I am. But I will not rate anyone a hero for choosing to stay in my life because one aspect of it is disabled. What I lack in physical ability I more than compensate for in my ability to wholeheartedly give myself and my heart to whoever needs me. I can be present. I can listen. I can empathize. I can love. I can be kind. I can have compassion. I will have your back and fight for you with all that I have. Ask my friends! They will tell you that I will most likely hurt myself just to be there for them. Does that make me a hero? Nope. It makes me a friend. See?
If you know someone in a wheelchair, or who has an invisible illness, mental illness, or all of the above, don’t praise others for their ability to still be there. It minimizes our worth and that is the last thing we need. Our loved ones are not “heros” for still being there any more than I would want someone to call me a hero for taking care of my husband after knee surgery WHILE I HAD A MUSCLE DISEASE. Oh right no one did that. I guess guys are just heros for staying with women who are disabled(insert sarcastic tone).
I’m not a hero for doing the right thing, for choosing to go out and take photographs on days I am in pain. A random stranger thinks they are saying something uplifting when they comment on my choice to go out to the park in my scooter and take photos, “GOOD FOR YOU!” Yeah I don’t need your encouragement thanks! I was just out trying to be normal and not singled out for being in a wheelchair actually out doing something. Are you praising me for me or for you? People in wheelchairs don’t ned any unnecessary comments about ” Oh I wish I had a wheelchair right now it’s so hot….I bet you run over lots of toes…don’t get a speeding ticket…you’re my hero for being out here…” My husband is not a hero for putting my scooter in the car. We are just two people trying to be good people in this world who happen to love each other fiercely.
Take hero out of the sentence when you are talking about someone with a disability. Just do that. And we’ll be good.
Thought I would share my instagram so that anyone having a bad day could go and find something positive. I started it about a year ago when I wanted to have something to positive to do every evening. I download all of my photos and I post them there. You will have thousand of photos to look at that are uplifting. It is how I end my day every day.
I was out in the rain last night with this fella. Little blue heron. He was shaking off all of the rain. I was trying to protect my scooter and my camera from the rain while taking his photo. It was a challenge but so rewarding!
Wild horses on the prairie, purple gallinule eating flowers, anhingas, whistling ducks, and owls in my backyard.
I did not allow any negative thought into my mind. It was filled with photography, focusing 100percent on what I was photographing, and filling myself with the colors and the light around me.
It was a good day. I savor those!
So many of us feel trapped in a cage. We feel we are behind the bars of stigmas, society, traumas, limitations, disabilities, invisible illnesses. We live in these prisons unable to speak our truths and be who we are meant to be, unashamed and free. The scars and the pain seem too hard to share and even in our joy we cannot express ourselves in fear of judgment.
So I went out today to the park
with prison bars on my face. I thought if I could face the world with courage to just be me, scars, wheelchair, pain, suffering, AND excitement to be out taking photographs, covered in a cage, then perhaps others can too, minus the cage make up or hey wear it if you want! I didn’t hide that cage that I felt. I accepted it but I also pushed through it in front of everyone to see.
Do you know that not one person, and I passed about 10 people or more, said one thing except hello.
So here I am, out at the park, unafraid of what others will think, and just being me.
*a special thank you to Angelica the anghinga who posed in a selfie with me