Guest Blogger: Denise DiNoto

  “How do you ‘manage’ life as a woman with a disability?”  This question is asked of me at least three times each month.  My initial response is typically, “What alternative do I have?”  I mean – really?  Who else has to answer this type of question?  I have come to learn that the question's source really has nothing to do with me and is often more about the person asking it.  I think the real thought in that person’s head may be:  “I see what you are doing, it terrifies me, and I don’t know if I would have the ability to do it.  If I figured it out, I don’t know if I could accomplish what you do with as much happiness/optimism/success.”  Again I say – really?  I manage because that is my choice.

All of us, no matter our physical ability, are given the opportunity to make choices.  However, as a person who requires assistance from others in order to live independently, there is a critical difference in my choices.   The distinction, for me and others who rely on caregivers or assistants for help with care, is we always make choices or consciously think about things most people never consider.  The able-bodied have the luxury of a life without these choices, a gift taken for granted; and, unless pressed, would never consider these common happenings real choices or decisions.

As an example, each and every day, from the minute I get out of bed, I choose when and how much liquid to consume so I can get through the entire day without having to use a bathroom.  Wheelchair users often refer to this as “pee math.”  Why does this matter?  This one simple choice influences so much of my daily activity and my ability to “manage.”  This choice means I do not drink during the day before 2:00 PM, other than my morning coffee, which I gulp immediately upon rising each day.  It also means the toilet is one of my first stops when I get home from work.  If my personal assistant is late or calls out, finding a replacement worker becomes the priority activity no matter what. 

My entire life is scheduled around when the pee math will become critical.  Those who are able to use a toilet at any location, at any time, without needing another person to make it happen, never worry about whether the choice to have a second mug of afternoon tea was a mistake.  Those who are able to urinate at will never worry about whether the clothes they are wearing could be sacrificed and cut off their body in an emergency if their personal assistant doesn’t show up and they NEED to get on a toilet NOW!  I have indeed taken scissors to my pants in order to get to a toilet before the pee math went beyond critical.

This choice to dehydrate myself daily – a choice many of my friends, family, and healthcare providers do not approve of - works for me.  Rather than spending my lunch break in the bathroom, using a toilet that is difficult for me to access, I get to eat.  That is my choice.  And it really does not matter to me if others do not understand or agree with it.

Every individual adapts to the abilities they have.  They take what they can do and they learn how to make it work, without focusing on what they cannot do.  Rather than dwell on what I am unable to do, I choose to focus on what I am able to do.  This way of thinking makes perfect sense to some, but to others it is quite illogical.

 Perhaps this trait is what makes me remarkable to those who lack the ability to easily adapt to challenges, and those who question me about “managing.”  But adaptation can be learned, and I think given the chance, most would figure it out.  As humans, we have been adapting to various environmental and physical situations over the course of our history.  It is within all of us to choose to make use of what is available to us in our situations in order to succeed.  

Denise DiNoto (Blog: Dee Scribes)

Comments

[Stacey]

Thank you Denise for sharing this with me. I look forward to understanding others challenges as I learn to understand my own.

Stacey

[Thepianist1221.wordpress.com]

Denise, your story is very inspiring. Thanks for sharing.....

I too am suffering from a disease that makes it difficult for my blood to flow into my legs. Fortunately, I can walk, but my legs have formed very ugly scars from wounds that took years to heal (I have one right now)and dead-looking veins that make me too awkward to wear shorts or skirts.

Whenever I do, I have to bear the curious glances of people. But then, like you, i choose not to let their stares affect me. I choose to be happy and to enjoy what life has to offer.

[Annepeterson]

Denise, I appreciate this post for two reasons. 1) You made me aware of how much I take things for granted, 2) I have a better understanding of the challenges a person in a wheelchair faces each day. Thank you so much for giving us a peek into just one part of your day.

[Denise DiNoto]

I'm late to responding to comments - sorry! Susan - feel free to use anything of mine, as long as it is OK with Lucia and the blog owners. If I can ever be of assistance with anything, just let me know.

Ann - you have always were and continue to be a mentor I can follow. Thank you for always believing in me and my abilities.

Charleen - I've been blessed to be surrounded by other achievers in my family.

[LG]

I am so supportive of you writing about pee math! Now I have a name for what I went through for years of my life. now I know I had to do "stool" math. It is indeed a blessing (from some part of some universe somewhere) to be able to take these daily bodily functions for granted and do them with ease and without a second thought. Very happy you feel free to write about pee!!!!! :-)

[Susan Frankel]

Denise, You and Jen taught me so much about how to face and manage limitations with a positive spirit. I would like to use your post and share it with the students in my human growth and development class that I teach. I dedicate 2 classes per semester to discussing disability issues with the class. I added it in because there are no disability courses taught at the college unless they are in the nursing department and I think it is critical to their own personal and professional growth and development. Now, I'm going to be thinking about whether I would choose eating or peeing if I had to make a health choice. Hmmm...what to do???

[Ann n obis]

Denise, you have always been a positive person! I love your thinking and approach. You inspire so many. You live the life you have as I have always taught Brie to to be happy and fulfilled. Love reading your blog. You go girl!

[Charleen Sastri]

Beautiful story of your daily life ; and also of the daily struggles that you accomplish within your heart. You are an achiever!!!!