The little things you don’t see when you see me.

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.

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!

Spur of the moment adventures with the husband

My husband got off work early and we totally spur of the moment drove to Cedar Key, Florida. There is no sea salt breeze or the sound of waves like when we go to St. Augustine Beach but that trip is 2 hours and this one was only an hour. The birds were magnificent. I was very excited to see the spoonbill. I love looking out over the water to see the little islands that are out there that I would LOVE to go to one day. There are places to rent canoes and such to get out there but I don’t think I’d be able to do that. Cedar Key is not the most wheelchair friendly place but it works. The view is worth it! We were there about an hour before a storm came in. I will post the photos of the pelicans, the sea gulls, the spoonbills, and the little islands over the water. I hope you all enjoy them. It was a relaxing trip home of back roads with no traffic and no buildings, just trees, everywhere trees. We pull back into the city but then get to drive the five mile trip down a back road to our own house that is covered by trees and surrounded by nature. We are so fortunate to live where we live.

It’s been a hard few nights of little sleep and painful muscles. I’m thrilled that we decided to just let all that go and have an adventure in the face of it all!

The lighting was not the best but there was something about each photo I liked anyway, like the sparkle in the water, or the veins that showed in the spoonbills face, and the little seagull on the line of posts, and the storm coming over the water.

A day in the life of me: steps

It takes 42 steps to walk from my bathroom to the kitchen.

It takes 77 steps to walk from my garage door to the mailbox and back

It takes 36 steps to walk from my back door to my car but only 16 to walk from my garage door to my car.

From the disabled parking spot to the front door of Piesanos restaurant it is 60 steps.

From the disabled parking spot to the cash register at the supermarket it is 100 steps.

From the disabled parking spot to the prayer garden it is 95 steps.

I can walk exactly 100 steps before I have to sit down and rest.

I started counting my steps one day when I thought that my own perception of how far something was, was hindering me from doing it. So I walked around my own house counting my steps until I had to sit down. It was 100 steps. I assumed to the mailbox and back it would be at least 200 steps. But nope. Only 77! I had stopped myself from walking to the mail box because in my mind I had made it an unattainable goal. Until one day I just did it!

I thought I could only drive to the supermarket. Until one day I decided to drive a little further. Then a little further. The only problem with driving is, when I get there I can’t walk very far because I’ve tired myself driving. YET, when my husband was out of town and my daughter had an allergic reaction, I drove further than I ever had to get her to the doctor and walked further than 100 steps to get her into the office. I paid a heavy price for weeks of weakness and pain due to that but I learned my limitations.

“That’s too far” turned into “ I think I can do that.” I just had to not let my mind limit my potential. I also had to realize my mind would allow me to push myself further than my body could handle. Boundaries, and limitations, and respect for my body, and keeping the faith helped me to understand my capabilities and inabilities.

My neighbor was out the other day walking and commented that she needed to get her “steps” in. She had one of those step counters. I kind of smiled on the inside. We both had our steps but mine were not the same as hers at all. I counted my steps earlier in the day for a completely different reason. Because of this muscle disease each step matters. My steps matter for different reasons than her steps. Not that her steps don’t matter. We each have our steps to reach our goal and to know our boundaries. Steps to recovery, steps to reach an exercise goal, steps we can take before we have to sit down. When she said this I was going around the block in my wheelchair. I had already gotten in MY steps for the day and was in cruise mode doing my photography.

Earlier, I had driven to Piesanos to pick up food for my daughter and me. I had promised her the night before that I’d get us food. It was not turning out to be a good day though. I stopped by the church on the way which added to my steps so I rested for awhile under the cross. I then went to get us our food. I open the car door and a little frog is in the door hinge still alive. My plan was to get into the restaurant and carry him and ask for a bag to put him in until I could get him back home and set him free. Well…as I was counting my steps (even though I know how many it takes it is reassuring to me) that little frog squiggled and wiggled his head out. I told the frog do not escape in this road!!!! I’m limping from too many steps. Just as I make it across the road that little frog did the longest leap a frog has ever made into a bush that I could not get him from RIGHT next to the road. So I said “ Mother FUCKER!” Much to a mother’s dismay who was walking past. How could I say, “ it was this frog I was trying to save!” Which my husband later pointed out that i was about to take into a restaurant anyway and who knows what would have happened. Along that way I got an intestinal bleed and blood started dripping down my leg. There was no way I could make it to the bathroom and then back to the car with our food. I always carry alcohol wipes so I wiped up my leg with the frog pee hand and picked up our food while making sure to not sit and rest or touch anything with that hand! I am a huge germ phobe because of my illness and my daughter I do NOT want to sick and would never expose anyone else to germs. I used my alcohol wipes and scoured my hands too much I’m sure. I lost count of my steps. Am walking back to the car and drop the food. Again saying FUCK because I am a cusser and it just comes right out. Call it the pent up anger of a stifled girl for 40 years. I make it to the car and have to rest a LONG time before getting home at which point I know I cannot walk the distance inside so I crawl carrying the food STILL mad as FUCK that that little frog wasn’t set free in my own yard. The idea that that little tree frog got stuck in a little bush next to a road makes me very upset even 3 days later! I brought the food in and lay on the floor for a long time. At that point I realize that I smell onions. Red onions are a huge trigger for me and PTSD. Miraculously my legs work as I stand up and frantically search for the onion smell. They are on the salad even though I asked for no onions. I try to scrape them off only for them to land on the floor and I almost break down. “Must get rid of onion smell. Can’t have onion smell. ” I’m frantically cleaning the floor when my daughter calls me and I tell her the onion situation. She says, God bless this child, “ Mom throw away the salad.” So I did. Then I looked at all of the food. Their it was (sorry for my there/their issues with spelling my brain can’t sort that out right now). My stomach had cramped for a week and I had barely eaten anything. I sat looking at all the food thinking of my old ways of anorexic controlling thoughts on all that food. I was so hungry. I was bleeding all over myself. My legs were shot. I just started eating. I ate and I ate and I ate. It was so satisfying. I then crawled the “steps” I would usually do to get to the bathroom but my legs could do no more steps. And I was not going to get blood on my scooter. I think it’s equally as hard to crawl and atrophied shoulders as it would be to walk but if my legs won’t walk they just won’t.

I flopped into the bathtub and then got into my bed. I’m pretty sure I met my steps for the day and more. I still went out later in my wheelchair to take photos because I honestly believe that a photo a day keeps all of the bad thoughts away! My daughter was so happy to get the food for lunch. Success. Made the daughter happy!

Just one day in the life of me.

*this is my 5th intestinal bleed. It stopped 2 days later.

Adventures with my preciousness husband

I wasn’t sure what would happen on today’s adventure because as soon as we got to the park it started to dump rain. We were in a pavilion type thing that had a tin roof and I must say if the only moment was listening to the rain on the roof while watching the dragonfly in the sun/pouring rain, that would have been enough. While we waited we chatted with a really kind family. Then we met an astronomer who was like a tour guide as we went out after the rain on our normal path. But he knew the names of all of the birds which was so cool!

We encountered a snake which was very awesome. He looked like a turtle to me. My husband took the photo of me so you could all see that I wasn’t THAT close but well kind of maybe close!

The lightening I sat forever to get it with my finger on the button just waiting and hoping. So excited to get that photo.

One of the birds in flight was an osprey who I have YET to get a clear photo of. If I could hold my hands over my head that would help but I can’t so…one day!