A baby taking their first steps. A toddler mastering potty training. A child’s first day of daycare or preschool. A teenager driving down the driveway for the first time. A young adult going off to college. There are millions of examples of how people experience independence. Finding freedom is a vital part of growing up and becoming an adult. Most teenagers crave the foreseeable independence. Often, seasoned adults tell kids that they really don’t want to grow up, but, until reality hits, younger people don’t understand why. When you’re young, the concept of being independent seems so desirable. The idea of being able to do things yourself is an exhilarating feeling.

As I’ve discussed in other entries, almost 23 years ago when I first started at UW-Whitewater, was when I first experienced real independence. I moved in a few days before the other freshmen. My mom and sister moved me in, and, when they left, I walked them to the door. After we said our goodbyes, I turned to go back to my room, but I accidentally turned the wrong direction and went to the “boys wing.” My mom and sister saw this and laughed which definitely helped during an emotional time. Why am I sharing this, you ask? That was my first ah-ha moment of independence. In college, I learned how to figure things out on my own. Everything from deciding what I want to eat, to figuring out how to get help with my school work, to navigating the whole care situation, I had no choice but to figure things out by myself. Looking back, I don’t know how I ever made that transition. I think the fact that I had absolutely no idea of what I was getting into and “going to college” was just the next normal step among my peers made me not think twice about it. Simply put, I learned how to be independent during my time in Whitewater.  To this day, I tell people that it was the best decision I’ve ever made.

I broke down and cried as we drove out of UW-Whitewater after graduation. I knew that I wanted to live “independently,” but, at that point, we had no idea what that would like. Eventually, I was able to move into an apartment in Oshkosh and have caregivers support me with my daily needs. For over nearly 14 years, I had what I call “split shifts” People would come assist me for an hour or two a few times throughout the day. I was used to that because that was how it was in college. It worked well for a few years, but it became incredibly difficult to find caregivers for short shifts. After moving back into my apartment a few months after COVID first hit, we moved to having two shifts per day—a two hour one in the morning and then a seven hour one in the evening. I was alone for seven hours during the day. While initially it may have been a little easier to recruit people to work, as we moved further along, it became apparent that it didn’t make much difference—it was challenging finding people regardless of the shifts. When I had a short shift and long shift, I tried to feed myself finger foods for lunch. I also wasn’t able to use the restroom at all during the day. While it worked OK for a few years, it wasn’t healthy or safe.

About a year and a half ago, due to various reasons, I brought up the idea of 24-hour care to my rehabilitation doctor. Not to judge, but I know others who have seemingly fewer physical needs who have 24-hour care. My doctor fully agreed that I would indeed benefit from more care hours. He wrote a letter in support of 24-hour care. I got a letter from my general physician as well.

As I wrote about in previous entries, the thought was to let an agency take over. Unfortunately, we waited over a year only to find out that the one and only agency that could meet my needs couldn’t staff me after all. The agency had said that they would be able to do 16 hours a day to start, so that’s what we did all the budget amendment paperwork for. When the agency fell through, we decided to still go for 16 hours a day.  I’ve heard that 24-hour care is getting more challenging to get approved, and, for the time being, I’m usually OK by myself overnight.

It took months, but I finally have a pretty full schedule of workers. Initially, having someone with me all the time was daunting. I seriously questioned what I was doing. What was I doing giving up my independence? Right or wrong, being independent has always been a major source of pride for me. With the severity of my limitations, I’ve been told many times that it’s pretty remarkable that I have been as independent as I am. What was I doing giving that up? As it turns out, I’m realizing that I’m not giving up independence. I’m actually gaining independence because I have people supporting me during the day which allows me to be able to do things. While I haven’t ventured very far yet (because we are just getting started with new people), I’m looking forward to actually going places during the day. I’ll be able to meet friends, go shopping, etc… I already have seen positive effects with being able to eat an actual lunch and use the restroom whenever I need to. For most people gaining weight isn’t a good thing, but, for me, going up a pants size is a great thing. I’m also finally able to hydrate properly which will be so helpful to my overall health.  It’s also so nice to have someone here when things drop or something happens to my wheelchair or another piece of equipment. I used to have to be so careful when I was alone during the day because if I accidentally hit something or something happened, I’d have to wait hours until the next person came. As minor as it sounds, if the straw would fall out of my water bottle, so I wouldn’t be able to get a drink sometimes for many hours. I can’t tell you how nice it is not to have to worry about things like that.

Until recently, I was skeptical of people who had a caregiver with them all the time. Why do they need that when they have more ability than I do? Do they want to be as independent as possible? Now, I get it. As people getting older, life isn’t about doing as much as you can by yourself. Independence isn’t about showing off. It’s about being able to create a safe and healthy lifestyle you choose!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.