It is really frustrating being stuck in a body that cannot keep up with your mind.

When I think of all the hobbies, jobs, or activities I would love to do vs. what the

list actually is, I am really limited. In actuality, the “things” I am able to do on

my own, are very few. I wonder, as I think about my limitations, how many

people do the majority of their activities entirely alone? Yes, I have a rather

large support system, but is that really a negative quality? I am not sure.

When I think of all the hobbies, jobs, or activities I would love to do vs. what the

list actually is, I am really limited. In actuality, the “things” I am able to do on

my own, are very few. I wonder, as I think about my limitations, how many

people do the majority of their activities entirely alone? Yes, I have a rather

large support system, but is that really a negative quality? I am not sure.

Maybe my lifestyle, minus the physical limits, is how to raise a productive family.

You know: “it takes a village”. Honestly, years ago this why extended families all

lived in multi-family homes. In other countries, this lifestyle is still a common

practice. I don’t know if this is just wishful thinking, so I won’t feel different

from everyone else.

I guess the best way to describe a small army is to describe them by levels, which

does not mean in any way they are ranked by worth. The ranking is

actually more like my emergency contact list. First, you call to contact one and

then go down the list.

At the core of the system I created for my family, is my younger sister. She is my best friend,

best friend, caregiver, and in many situations the working body I so desperately crave.

I do try to return the gift as much as possible but, unfortunately, the elements that I

bring to the table are a lot less visible and tangible. Helping someone learn to rewalk,

and drive their kids around to all there appointments, is measurable with obvious

needs that are met. She knows what I want to do next before I do. Monetary

compensation can be made for the time, as well as the cost of gas, etc. Somehow these

compensations feel inadequate payment for the ability to choose so many parts of my

life that I otherwise would not have.

The second level of my support system is my PCAs (personal care attendants) staff which

consists of 6 people who get an hourly wage to help me live my daily life. For

example, showering is something I can no longer do without the assistance of these people.

Among these 6 main people areis that very same younger sister and my mother. The rest of

this small group is made up of people I have “collected” over time, through either different

website made to find caretakes, or word of mouth. This group of women has changed in

number, age, and talents over the course of let’s say a decade, but in various shapes and

forms, I have them.

y same younger sister and my mother. The rest of

this small group is made up of people I have “collected” over time, through either different

website made to find caretakes, or word of mouth. This group of women has changed in

number, age and talents over the course of let’s say a decade, but in various shapes and

forms I have them.

The level of support as I find almost everyone else landing includes family and friends. Really

I tend to consider it anyone else in my life that I spend any time with that is not on

my payroll. This is not to say that these people aren’t good to us, they are willing to help

when asked. They, however, play little to no role in my family’s day to day function.

Really I tend to consider it anyone else in my life that I spend any time with that is not on

my payroll. This is not to say that these people aren’t good to us, they are willing to help

when asked. They, however, play little to no role in my family’s day to day function.

I like to think with a greater level of understanding of the complex working of my day to day life,

attendance of all said family and friends would improve. I do understand that

everyone, at least that I am aware of, is very busy and lives hectic lives. I also comprehend

the idea that all aspects of life are relative. What I am able to handle or manage might be

more items but we are both at our max.

Life, I am learning is a series of choices. It is all about our priorities and values.

Example for me- self-care has moved up on my list of priorities.