Life With a 60-Hour a Week Part-Time Job
My mom claims that she works part-time. She works mostly from home so there’s not really a way to accurately assess exactly how many hours she works. If you ask her about her job, she’ll say, “oh, well, I have a part-time job as an early childhood educational consultant. That way I can still have room for other parts of my life besides just my career.”
However, I’ve observed her. My mom actually works all hours of the day and night. This adds up to what I would guess to be at least 60 hours. She works on various extremely complicated and involved projects for her boss. Her boss is a billionaire philanthropist
She can be found awake on her computer at 2 AM perfecting a Webinar for a presentation. Otherwise, it may be 5 AM and she’s putting the last finishing touches on a children’s book she just wrote. Last I checked that is way more than a part-time job. That’s a job that’s taken over her life.
Jonathan’s Life Struggles
One of the reasons my mom decided to work from home and work “part-time” was to take care of us. Us, meaning my brothers and me. My brother Jonathan who was four years younger than me had severe learning disabilities and suffered from depression and self-esteem issues as a result. He was requiring a lot of assistance to just get through his last year of high school.
Every night my mom and dad needed to sit down with him for hours and hours at a time to go over schoolwork. Then they needed to talk to him about his feelings and cheer him up. He had recently started seeing a therapist and a psychiatrist and had started taking anti-depressants.
Michael’s Life Struggles
My brother Michael was still struggling with severe OCD, depression, and who knows what else. He would wash his hands until they were red and scaly. Michael had stopped turning in homework because he couldn’t make it perfect enough. He had stopped playing with his toys and touching his own belongings because he was afraid he would get them dirty.
The only thing he seemed to ever want to do was to lay in bed and sleep his life away. My parents had gotten him a therapist and a psychiatrist as well.
My Own Life Struggles
As far as myself, I still suffered from gastroparesis which meant my stomach was paralyzed, and my entire digestive tract was almost completely non-functional.
I also had chronic anemia, osteoporosis, malabsorption, hypothyroid, migraines, orthostatic hypotension, tachycardia, A-fib, SVT, GERD, asthma, and a form of some disease called dysautonomia that they were still working on isolating, and six days earlier I had just had a tumor surgically removed from my brain.
Once I got home from the hospital, I started getting a home health aide who would come in a couple of hours a day and help take care of me, to take some of the stress off my mother who had her hands way too full with the three of us.
Life with a Home Health Aide
The home health aide would come in in the morning, help me shower while sitting on a shower bench that the OT at Mass General had ordered. Then she would blow dry, brush, and French braid my hair. It felt so awkward to have someone seeing me naked for such a prolonged period of time, but she made it seem natural, which in her line of work it was.
Once my shower was done, she would get me dressed and put me in my wheelchair. If I needed laundry done, she would do my laundry. She would also tidy up my room and help me with my physical therapy exercises. Basically, she would help me do things I used to be able to do for myself but couldn’t anymore, things everyone else in the world could do.
I chose to look at it differently though, I looked at it, as her helping me do things to make my life a little easier.
Working My Butt Off to Go to Nursing School
Dr. Swearingen made sure that I had physical therapy and occupational therapy at home as well. Physical therapy came in three times a week and occupational therapy once a week. They both gave me pages and pages of exercises to try and do so that I could get strong enough to at least walk farther with the walker. I worked my butt off, doing all of the exercises twice a day, even without prompting or anything.
My goal was to get strong enough to go back to school for the spring semester. I had just gotten into Elm’s college with a $40,000 nursing school scholarship for having a 4.0 GPA at the community college and I wanted to keep on pushing forward with my life plans.
While I knew I would still need the walker at the beginning of February, it was my hope at least that I would be able to lose the wheelchair and use only the walker as my primary mode of transportation soon.
“A student with a walker typically wouldn’t pass the nursing schools’ required physical examination needed to attend the educational programs for a nursing degree, however, you have a unique situation. So we will allow you to attend the classes but not the clinical hours in the spring semester and do the clinical hours in the summer once you have recovered further.” The head of the nursing department explained to me.
Throwing Myself into Therapy
The first two weeks at home were emotionally trying, physically difficult, and painful. When my mom took me out in the wheelchair people stared at me. When I stayed home I felt useless.
Even Corrie and Sarah weren’t able to find the right words to cheer me up. I threw myself into Physical therapy and Occupational Therapy exercises for the major part of each day.
Then, on the Monday that was exactly 2 weeks and 2 days after I’d been discharged from the hospital, I was successfully able to stand up and get myself into the wheelchair with no help. The feeling was one of pure exhilaration! My hard work was paying off. This whole being weak and needing constant assistance was temporary.
Solid Proof of Recovery
After that, the funk, that had been pervading my whole being, began to lift. Now that I could independently stand, my aide, brought the scale out of the bathroom and into the living room. The room with the pull-out couch that had been tuned into my bedroom. With my aide standing close by, I was able to step onto the scale and get an accurate weight. I had lost over 17 pounds in the last two weeks. I was ecstatic. Part of me thought it was too good to be true, so I got off the scale and then got on it again, two more times just to make sure it was reading right. My heart was soaring.
This tumor had come on sneaky, slowly engulfed more and more of my life until it almost swallowed me whole. Now it was gone and I was coming out on the other side, with a few stitches in my stomach, some sinus congestion, and medicine I had to squirt up my nose. This, in the scheme of things, was not bad at all. I could get on with my life. I could go back to nursing school, get my degree, become a pediatric nurse, maybe find a nice partner. Hell, I had my whole life ahead of me now.
Getting my Life Back with an Attitude Change
The following day I called up Corrie and Sarah myself instead of waiting for them to call me. Sarah answered the phone.
“Do you guys want to go to Starbucks with me?” I asked her.
“Of course, you sound so much better!” Sarah said. “Is the surgery helping you feel better already?”
“More of an attitude adjustment,” I explained to her. “But I did lose 17.6 pounds from the surgery.”
Over the next week, life settled into a routine.
The aide would come in the morning and then physical therapy and/or occupational therapy, and then I would read, write, paint, sketch and hang out with Corrie and Sarah for the rest of the day. At night before bed, I would redo all of my OT and PT exercises with the walker standing in front of me and the bed behind me.
Getting More Mobile
I was seeing improvements every day and by the end of my third week home, I was able to put my wheelchair across the living room where my pull-out couch bed was and then leave my walker next to the bed and walk with the walker to the wheelchair every time I got up.
“I don’t think I’ve ever seen someone work quite this hard ever before. You’re doing better than anyone could have even hoped for,” the physical therapist told me.
“I know what I want,” I explained to her, and I did. I had big plans for myself and I wasn’t going to let some disease take them away. Now that the tumor was gone I figured we’d just have to deal with the gastroparesis and whatever this dysautonomia thing was. I still vomited frequently and couldn’t eat much, and got dizzy, but that was old news. We’d just have to keep trying new ways to deal with that, but I imagined life would get a lot calmer now.