You are not a “hero” because you love someone with a disease

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.

Meet Marigold

I have listened to Marigold do her nightly screaming rounds for months and infact she screams quite frequently outside my bedroom window. She often startles me by jumping OUT OF THE BLUE onto my deck outside my window, looks at me, then runs off. Today was my first actual introduction to her though. I was out photographing the owls Johnson and Chrysanthemum. Johnson was scared away and missing for days after july 4th and he finally came back only for us to discover that his eye was not looking well again. He is underweight and has been struggling. I’ve been photographing him for months now and he was just perking up. Then he was gone. A few days ago I photographed him and his eye was not looking well so I, being how I am, barely slept worrying that he would not be ok. But it was a wasted time of worry! We found him tonight out attempting to hunt with both his mother and father and sister with him. He was fed twice which took away all of my worries. Knowing his parents are by his side and still feeding him just makes my soul say ahhhhhh okkkkkk. While out witnessing all of these beautiful moments my husband pointed out the fox! I’d been trying to get a photo of her for FOREVER! Finally there she was. I thought she would run away but I drove my scooter up slowly and just close enough to use my zoom lens to try and get a shot. As soon as I did she did a big stretch and flopped down on the ground and rolled over. I immediately loved her!!! Isn’t it funny how an animal that was startling me daily and getting a bit on my nerves won my heart over in two moments. Just shows that you cannot judge someone from a few meetings and chance encounters. Sometimes it takes a little longer to see their heart!

Straight up happiness photos

In the MIDDLE of our car breaking down, me breaking down, etc, we pulled over to assess the car situation and THIS happened and really and truly nothing else mattered!!! After we finally made it home and I got to look at these photos I was so proud of us for seizing the moment. My husband brought out the duck food that I mixed and we keep in the car, and sprinkled it around for them. Many ducks came. Even a cat came! These moments are why photography has simply saved my life! I hope they make you as happy as they make me.

Hannah, Scarlet, and little red

The cardinal family takes care of each other. The males feed the baby. The males feed water and food to their mate. The female feeds her husband and her baby. They work together. They are loyal. They are devoted. And the love they have just radiates from them. I watched them for months raise little Scarlet. She now has all of her color and is still with her family. They know me so well that when I sit on the deck they will fly in and drink from the birdbath. Watching them gives me hope.