Prompt 1: CTRL (Control) – Write about control. It could be the ways you wish you could control your life, or the ways you might try to. It could be the ways others have tried to control you. It can be about control in general and what you think of it. Whatever you’re thinking, write it! Prompt 2: write about something that is not mainstream What do you do that’s alternate to what others do? What are some things you like that are not so popular? Alternatively, you can also write about an alternate route, alternate route, alternative music, alternative fashion, an alternate means of energy, or anything else you think of.

Prompt 3: If you could hit the DELETE button on anything, what would you delete button on anything, what would you delete? Would it be a person? A thing? A moment in time? Is there anything at all that deserves total deletion? If so, why? If not explore why not.

Control, what is it? Can I actually have it or is it just a dream?

I have learned as a person with a physical disability that controlling my environment helps in the sense that I need to know if I can walk with a prosthetic leg as an amputee through whatever surface and obstacles are in my vicinity.  Life wasn’t made for me.  I have to adapt. In order to adapt, I have to prepare my mind and my responses to the area I am in at any given moment.

For example, I went on a trip to the Great Smokey Mountains and discovered everything was on a steep hill.  I looked for any signs of an ADA friendly walking path or flat surfaces to the places I wanted to see. If the surface was on level ground, I found it to be bumpy, rocky and like walking through a little land mine of tall grass.  I couldn’t always tell if where I was walking was a hill, a hole or a rock.  I loved the cabins but at some point, it became too exhausting for me to get in and out of the car and trapse another trail when my endurance wasn’t built for that. 

The challenges of controlling a prosthetic leg in any environment makes me want to scream some days.  It's not like I slap it on and go.  Some days I have swelling issues and can’t get it on, or its too tight and rubs and leaves blisters.  If it is uncomfortable to walk in the leg, then the rest of my body reacts.  My back will be off kilter and start hurting, my muscles will start to shake and ache, and I get a bit fatigued.  You see, I use twice as much mental and physical power just to do every step when I’m awake, upright and walking. 

Just going anywhere without knowing what the terrain will be like and how far I might be expected to walk is stressful.  I’m not a young, 20-something athlete with a running blade. I’m a middle-aged woman who does yoga and likes to crochet and read books.

Alternatively, I also like to be with friends and do fun things. This has been a hard concept to grasp for my friends who are used to just getting out and going and can walk miles in a day shopping or sightseeing.  I like these things too. I just have to do them differently.  No one wants to lift my wheelchair up into the back of a vehicle because I use it when there’s more walking than I can stand where we are attending.  It could be an outdoor event, a concert, shopping or even a super large store.  I get just as frustrated when I’m not invited or asked because they assume I can’t do something, or they don’t want to make any accommodations so that I can participate.  I can walk some distance, I can stand for short periods of time, and I can drive.  I live alone and do everything I did before having cancer and losing my leg.  I have to remind them to let ME decide what I can and cannot do. 

I recently went to Phoenix Arizona to Empowerfest, put on by Hanger Clinic.  Over 200 amputees of all stages were there to learn adaptive recreational sports and things to challenge themselves to try such as horseback riding, rock climbing and wheelchair basketball.  Like I previously said, I’m not an athlete. But I looked forward to seeing what it felt like to sit on a horse after 35 plus years and as an amputee. 

That morning came to head on the tour bus out to the horse ranch.  It looked like a scene from Bonanza! I felt like we were in the middle of the dusty trails and there were cactus, tumbleweeds and little trees between miles of dry clay-like dirt.  When it came my turn, I walked, with help, up three stand-alone steps. Put my left prosthetic foot in the stirrup and hoisted up my body to the saddle.  Two strong cowboys helped me get my right leg over to the other side of the horse.  Up I popped and was like, woah! This is so cool!  I thought they’d lead me around, but they said, you’re ready, and off my horse walked along the fence.  I had a bit of a stubborn one who kept pulling the reigns because she was used to pulling a wagon and wanted to go faster. Nope, Nada…not today sweetheart. I talked to her like I would a small child.  I patted her and told her she was doing good and that I was proud of her.

If I could delete anything about being an amputee, it would be the attitudes and lack of inclusion and available access to many, many places.  I need a shirt that says, “I lost my leg, not my brain, treat me like a two-legged person.”  I have daily challenges just leaving the place I live and venturing out into the public.  I have to be the one to adjust to the nondisabled environment.  I get attitudes that are like, well, we’re not going to accommodate you because that’s expensive. Um, my leg cost about fifty thousand dollars, how would a level ramp that you can remove when not in use or a toilet that is higher with handrails be so expensive?  I’ve had to go the BACK of older buildings to the ‘service elevator’ just to get upstairs where everyone else has already arrived, and let me tell you, they are super scary. I’ve had to figure out how to get up 25 steps to an upstairs event because there weren’t any ramps or elevators.  Stairs are next to impossible when you have a robot leg and two bad knees.

The attitudes of people in general can be so triggering to the person who is just trying to be a part of life without being judged and treated as someone who may have to have accommodations. Anyone can join the disabled community at any given time. ADA rules need to be modernized and updated and more requirements for both old and new buildings to be accessible for everyone no matter what their physical or hidden disability might be.  Don’t get me started on handicap parking abuse and handicap restroom stalls that are used like storage or diaper changing tables that aren’t used properly and take up valuable space. 

I consider myself an advocate for everyone. Not just myself.  I am a highly intelligent, creative person who just happens to be missing part of my left leg.  I fought off synovial sarcoma cancer not just once but four more recurrences in the first 7 years of this 15-year journey. And I had to do it alone, by myself without anyone helping me on a daily basis.  I cried, screamed and fought my way to some semblance of a normal life.