Image of a lightbulb floating against a blue sky and clouds. There is a tree and birds flying inside the bulb.

Conservation of Energy

When I was younger, I thought I would grow up to be a music therapist and structured my high school course work to match my projected career path. I took only the minimum required science courses – earth science, biology and chemistry – and not physics. I stayed away from physics because I could never remember all the formulas and equations. Density, momentum, power, work and energy – my brain hated this math dressed up as science. Even now, the only physics concept I relate to is the law of conservation of energy. This law states energy cannot be created nor destroyed, merely transformed from one form to another.

I relate to the law of conservation of energy because I live my life juggling energy. I talked about this before in this post when I wrote about Christine Miserandino’s spoon theory and how it applies to my life. I have “good energy” days and “bad energy” days. Unfortunately, I cannot predict when either will occur. Sometimes I will have multiple meetings scheduled for work, but I wake up and discover it is a bad energy day. When this happens, I know I must conserve what little energy I have so I can accomplish the most and still have energy to get home, go to the bathroom and get to bed. Sometimes I will have nothing planned, but I wake up and feel full of energy. When this happens, I try to accomplish as much as possible without overdoing it and accidentally causing the next day to be a bad energy day. Since my femur fracture in January the energy required to complete daily tasks has increased, forcing me to juggle enjoyable pursuits such as writing, with required activities, such as employment, with creativity.

Lately, my energy level has been more depleted because I am once again struggling to maintain adequate Personal Assistant (PA) staffing. I’ve written before about the importance of good PA staff and it turned out to be one of my most popular posts. This tells me I am not alone in my struggle. If you haven’t read that post about how my life is different when personal needs are met, please take a moment to go read it now. I’ll wait. Really – go read it.

In physics, objects have potential energy. I remember it as the stored energy of an object in relation to another object. I know, that definition is too simplistic, but remember I didn’t do physics. A coiled spring has potential energy, as does the string of a bow which has been pulled back by an archer. Potential energy is influenced by force. In my case, my body has potential energy and my PA’s impact the level of potential energy each day through the force of their work.

Physicists describe work as the force required to move an object. There is a formula to calculate work but as I’ve already explained, I am bad with formulas. What I do know is work transfers energy from one object to another. This I understand, because when I have adequate PA staffing, their work creates energy in my body. When my PA shows up on time in the morning to help me get out of bed, go to the bathroom, shower and get dressed, I have more energy. When my PA comes as scheduled to help prepare my meals and perform basic housekeeping, I have more energy to pursue those activities which matter to me (employment, writing, crochet, and more) because I have conserved the energy I would have otherwise spent on other tasks. Likewise, when a PA is late for a shift or calls out at the last minute, I am forced to waste expend energy on locating a replacement so my basic needs are met. And when the PA who is scheduled to assist me at the therapeutic pool with my outpatient physical therapy has car trouble or difficulty with childcare, I am unable to engage in exercise which helps build strength crucial to my ongoing recuperation.

Other outside forces impact my energy level. I have more energy when I am warm than when I am cold. The physicists might try to apply some law to this (thermodynamics?). To me, it’s as simple as cold causes pain and pain makes movement more difficult. I also rely on mechanical and electrical energy frequently – my power wheelchair, my electric bed, the transfer seat base in my van.

My life is a constant struggle for energy. Energy is a precious commodity which must be conserved and managed in order for me to engage in my community. When the force and work required to maintain my energy is not consistent, I go into survival mode. I stop doing the activities which bring me joy so I can preserve the energy required to get me through basic daily tasks. Over time, this drain on my energy creates stress on my mental and physical health.

Suffice it to say – I’m still recruiting new staff. Maybe I need to change the job title to “Energy Conservation Technician” instead of “Personal Assistant” to more accurately reflect the true value of the work.

Prioritizing Me

At the start of 2015, I read several blog posts written by friends describing how they selected their “One Word.” I have never tried selecting “My One Word” but I thought it might be an opportunity to incorporate more intentionality into my daily routine. After spending several days with a thesaurus and my thoughts, I decided on my word for 2015:

Charitable

I shared my word with this post, explaining my selection. The definition, “merciful or kind in judging others,” described a trait I wanted for myself. Instead of rushing to the negative, rolling my eyes, or silently huffing an exasperated sigh, I would try to be charitable.

Just before New Year’s Day 2016, I started reading about the words my fellow writers had selected. I was not feeling successful with the word I had selected for 2015, and had not considered repeating the exercise this year.

Did selecting a word actually make me exhibit more charitable behavior? I certainly tried. But all too often, I would roll my eyes, sigh in exasperation and spout off negatively without demonstrating mercy or kindness. Then, I would remember my word and curse at myself for not being charitable. Honestly, participating in My One Word often made me feel like a failure in 2015. Rather than actually demonstrating charitable behavior, I repeatedly realized (too late) how many times I rushed to judgement. I felt it called attention to all the instances when I could have done better, but failed to.

The exercise was not be a complete waste. After all, I may not have recognized my behavior if I had not been focused on the word. Having awareness in the moments when I failed to act charitably did encourage me to take a few moments to seek out positives about other people. For example, when my Personal Assistant ‘J’ consistently displayed difficulty following verbal directions, I began to react with impatience and frustration.

No, I said the cabinet under the toaster, not the cabinet under the microwave.

They go above the dishwasher, not over the stove. I don’t keep things I regularly use over the stove – I can’t reach those cupboards!

Were you listening? It’s in the pantry, not the linen closet. Why would I keep a box of crackers in the linen closet? 

I actually said these things, and other statements like them, many times. True story.

This communication did not help either of us. She was doing her best, but J was unable to follow complex verbal instructions such as “Dry the mug (instruction 1) and put it in the cupboard (instruction 2) over the dishwasher (instruction 3).”

Once I discovered her auditory processing difficulty, I compensated by changing our interactions. I used written lists when I could. I broke complex tasks down into step by step activities and only gave her one verbal cue at a time. It was not easy, but she was a reliable employee – always showing up on time for her shifts, willing to cover for others, kind and considerate – and I felt I could manage to be more charitable and accommodating as her employer. Every time I got frustrated and began to think less than charitable thoughts, I reframed the voice in my head and ran down the list of good qualities she possessed. I knew she needed the job, and even though we didn’t work perfectly together, I thought we were alright. Things weren’t exactly as I wished, but this was what it meant to  be charitable, right? I took deep breaths and attempted to continue to make improvements in our working relationship as the months went by.

This worked until January 13, 2016. At 2:36 PM, (I know the exact time because I looked at the clock as it was happening) I was transferring from my wheelchair to the bedside commode with J’s assistance. Suddenly, my right knee gave out on me and I knew I was not going to be able to remain on my feet. Calmly, I instructed J on how to best assist me. I was too far into the transfer to safely make it back to the wheelchair. The bedside commode was not sturdy enough to stop me if we tried to move onto the commode. The only thing to do was to have J slowly lower me backwards onto the floor. I gave instructions, which J ignored. In fact, she began to argue with me stating that she couldn’t let me go to the floor.

Months of attempting to be charitable flew out the window when she dropped me. As my leg snapped under me and I began to scream in pain, I recognized the cost I paid for my “charity” in allowing her to continue employment with me when I knew inside we were not a good fit.

There are many instances in my life when I can afford to be, and should endeavor to be, more charitable towards others. When it comes to my personal care and my safety, I no longer have room for charity towards those who are helping me. Tasks must be done as I instruct, without question or hesitation. The consequences of my Personal Assistants not following my directions can be dire,  life-changing and life threatening.

Think I’m being dramatic? The last time I had surgery and ended up hospitalized, I almost died. My broken leg has changed everything in my world. I am unable to put any weight on my leg, for at least another three weeks. I cannot drive right now, so I am truly home-bound unless I convince someone to drive me. I now require additional adaptive equipment to safely transfer in and out of bed, to and from my wheelchair, on and off the commode.

I have hired new staff and I am setting the ground rules from the get go. I will not compromise on my safety. I cannot afford to.

Even for the sake of being charitable.

X-ray photo of a knee and femur. The femur is broken and there is a metal plate along the side of the bone with 13 screws.
My new hardware, installed in January 2016. See the fracture?

Adventures in Hiring

Since coming home from the hospital, most of my time has been consumed by physical therapy and hiring new Personal Assistance (PA) staff. I terminated the employee who dropped me in January. leaving me with a huge vacancy in my PA schedule. In addition, I am home-bound now (at least for the next six weeks) and require assistance during the day. During my hospitalization, the staff and other patients often asked me about the process I use to recruit and hire new staff. This is my routine. It may not work best for you or someone you know, but I have found it to be successful.

The first thing I always tell people who are new to hiring PAs is to remember you are seeking an employee. You are not hiring a friend. You are not looking for someone to take control of your life. You are hiring an employee who will assist you in living the best life you can live. You may develop a friendly relationship, but at the end of the day that PA is paid to be your staff. Treat your role as an employer seriously, and learn your responsibilities. This may include learning some basic information about how to write a job posting, how to conduct an interview, what questions are illegal to ask, or when to make the job offer.

One of the best resources I have found for recruiting new staff is Craigslist. I place my job posting, and within an hour I have applicants sending me emails expressing their interest. Granted, not every applicant is worth an interview. But for sheer volume of potential employees, I find Craigslist to be the most economical.

Last year, on the advice of peers, I began using an online screening survey to help weed out select potential candidates for interviews. This brief survey includes questions about prior experience and the qualities I deem essential for employment. Most applicants are willing to complete the survey and the results have made my recruiting and hiring efforts less taxing. The survey is the best tool I’ve used to help me identify candidates worthy of a phone interview.

The phone interview is important for many reasons. First, I schedule the interview with the candidate so they are required to call me at a set time. If a candidate cannot keep an appointment for a phone interview, they will never be able to make a scheduled shift on time. Of the candidates I invite to participate in a phone interview, approximately 50% fail to call at the scheduled time. Second, the phone interview helps me eliminate people who are not good candidates for in-person interviews. I can ask questions about any of the candidate’s survey responses which may have caused concern or seemed not quite truthful. I am surprised at how many people say one thing in the survey but then contradict themselves on the phone. And third, sometimes the candidates simply are not interested in pursuing the job after learning more during the phone interview. I would rather eliminate someone who knows my job is not the right employment opportunity for them at this stage. It saves time and energy for both of us to not have them come for an in-person interview for a job they know is not a good fit.

Last week, I received eighteen responses to my job posting in just three days. Seven candidates completed the online survey. I held two phone interviews (the third person never called). I knew after the phone interviews there was really only one person I wanted to interview in person. She came to my house on Saturday for an interview. After telling her more about the job, and my expectations for an employee, I asked her questions. In addition to saying all the right answers, she had an upbeat personality and glowing references. Her questions for me showed maturity and understanding. Thankfully, she accepted the job offer and will start this week.

One of my most popular posts last year was this post about the importance of meeting personal needs. It takes a carefully curated team of paid PA staff, family and friends to maintain my independent lifestyle. Since returning home from the hospital, my support network has gone above and beyond expectations – assisting me with personal care, doing laundry, bringing me meals, doing my errands and grocery shopping. Their help allowed me the time required to successfully recruit and hire new staff without worrying about how to meet my basic needs.

With my personal care needs met, I now feel like I can finally begin the process of adjusting to my new “normal” at home. Having adequate staff means I can complete my home exercise program three times each day as recommended. I can drink more fluids since I have more consistent assistance using the bathroom during the day. I am able to focus more on recovery than the tasks required just to stay alive.

Current status: Sitting in a sunbeam in my dining room, preparing to write thank you notes, drinking another cup of coffee because I can go pee later!

Redefining Disability Challenge – Question 41

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the forty-first question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

Free post day! Write about anything on your mind today. Any topic that the series doesn’t cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.

I hate winter weather. I despise being cold. It causes physical pain when my feet get cold, and they are almost always cold from November to May each year. I dislike having to drive in snow with other drivers, most of whom never seem to remember to be cautious. I can’t move my arms if I have to wear bulky sweaters and jackets. Every movement requires more energy and takes more time.

My friends and family know I hate winter. I do my best not to complain. However, it is a safe bet I will put on a bright face in public yet privately curse the cold in my head for months on end. I spend far too much time and energy being miserable about something I cannot control – a behavior I routinely advise others to avoid.

Why do I stay in upstate New York where I am miserable due to weather for six months of the year? Wouldn’t it just make sense to move to a warmer climate?

I stay in New York for many reasons. My elderly parents live in New York, and I like being able to get to them within a couple of hours if needed. Most of my other family members live in New York, and they are part of the support network I rely on to live independently. But the main reason I continue to live in New York is because my disability requires me to use personal assistance to be independent, and New York has one of the best consumer directed personal assistance (CDPA) programs in the United States.

As I have mentioned in prior posts (you can find three of them here, here and here), I rely on the Personal Assistants I employ through CDPA to perform daily tasks most nondisabled people don’t think about. Each day, these dedicated women get me in and out of bed, help me on and off the toilet, assist me with showering and dressing, style my hair, prepare my food and clean my house.

If you required this level of assistance to meet your basic needs, and could not afford to pay for them out of pocket (private health insurance does not pay for long-term home care), you would want to live in a state with good services. I have decided to tolerate single-digit Fahrenheit temperatures and below-zero wind chills because I do not have $50,000 to spend on my personal care each year and I want to have control over how and when I receive my care.

In the United States, most people who require long-term home care rely on Medicaid to pay for care. Some states do not offer self-directed services to Medicaid recipients. Some states have waiting lists for home care, forcing people to remain in institutions. Some states limit the number of hours or care a person can receive. Most states limit the amount of income a person can earn and still remain eligible for CDPA through Medicaid.

New York has a comparatively generous Medicaid Buy-In Program for Working People with Disabilities. As a single person, I can earn almost $60,000/year and still remain eligible for CDPA. There are very few states which permit that level of income while retaining services.

I am not saying New York is the best state in the nation. There are many reasons to want to leave. But when it comes to how I live my life, there are many reasons I stay.

Even if it means another day of freezing cold. Spring is only three months away. I can make it.

Unless I win the Powerball tonight. Then all bets are off because the meteorologist just said it is 6° Fahrenheit this morning and I’m cold.

 

 

Redefining Disability Challenge – Question 37

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty-seventh question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

Have recent advancements in medicine or technology had any effect on the way you manage your disability?

This may be a question of semantics, but I have never considered “managing” my disability as something I do in my daily routine. Some medical providers talk about “managing” your diabetes or blood sugar, or “managing” hypertension. Changing technology has made it easier for me to function in a world designed for the nondisabled, but I have never defined that as “managing” my disability.

Because I am a word geek, I did what I often do when I am writing. I opened my dictionary and read definitions of “manage.” According to my trusty Merriam-Webster, manage is a transitive verb meaning “to handle or direct with a degree of skill; to treat with care; to exercise executive, administrative and supervisory direction of; to succeed in accomplishing; to direct the professional career of.”

There are other uses as well. As an intransitive verb, manage means “to direct or carry on business affairs; to achieve one’s purpose.”

I have always said I cannot “manage” a progressive neuromuscular disease. I cannot handle or direct with any degree of skill the manner in which my muscles deteriorate.

But, I do strive to treat myself with care. Certainly, I know I exercise executive, administrative and supervisory direction of my life. I have shown success in accomplishing and directing a professional career for two decades. I most assuredly direct or carry on business affairs. I manage my Personal Assistants (PAs) on a daily basis to achieve my purpose of living what I consider to be a good quality of life in a body which does not always function as I wish it did.

Yes, my progressive neuromuscular disease is going to progress as it will. I have no control over it and cannot manage that part of life.

However, I do my best to live a healthy lifestyle, get adequate sleep, eat nutritious food – all things which in theory should help me function at my best. I use technology to my advantage to be as physically active as possible in my community – an elevating wheelchair, an electric hospital bed, a modified van and more.

There is not an approved drug treatment which will slow the progression of my disability. Physical therapy and stretching may help slow the progression of joint contractures and muscle atrophy, but insurance will not pay for continued “maintenance” treatment which is not “restorative.” There is technology which improves my independence. I communicate with my PAs using text messaging, eliminating the need to wait for a return phone call when I am looking for a back-up to help me get in or out of bed. The emergency response alert system allows me to call for assistance with the touch of a button. Yes, I have one of those “I’ve fallen and I can’t get up” bracelets. I don’t wear it, but it is next to my bed should I need to summon help when I am alone at night.

I wrote about “managing” life as a person with a disability last year for the AbleBodies blog. In that post I wrote how I view managing as merely making choices in life.

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.

We all make choices to help us “manage.” Everyone adapts to the abilities they have and makes life decisions for a variety of reasons. I choose to focus on making choices which maximize my ability to engage in the activities which are most important to me. Whether or not anyone else agrees with these choices, they are my choices. It is how I manage.