Finding purpose

Posted by Reeve Staff in Life After Paralysis on October 23, 2019 # Caregiving

By contributing writer Amber Collie

Most of us want to feel like we are doing something in life that has a purpose. When my son Zack was paralyzed at age 15 and my world turned upside down, I did what I had to do. I wasn't thinking about purpose in those early years. I was surviving, focused on small and large goals, the highest being independence. We achieved that goal nine years post- injury this last November. It’s now been almost one year that Zack has lived independently from his parents and siblings. He lives with his fiancé and has outside caregivers. The first couple months of the transition I was still trying to offer help, nervous and excited wanting everything to go perfect. It took a couple of my own personal bumps in the road to allow me to see that it was ok for Zack to hit his own bumps in the road because he had to learn his own life lessons. Oddly we usually learn faster from the hard stuff.

The next phase for me was a letdown, mixed emotions and sadness. I was SO used to being insanely busy that having actual down time, I didn't know what to do or how to process it. I'm the kind of person who feels satisfaction through getting things done, I knew what I needed to do before, now I found myself with gaps of time. I wanted to concentrate on my three other children but I actually lost energy, motivation, went into a slight depression, which tunneled to deeper depression. I've fought those feelings before, but this was different. I had given everything to my son and lost myself in the process. Now I was facing me. Who am I? I'm no longer “Zack’s caregiver” I'm no longer depended on or needed daily anymore. These negative thoughts would run through my head. Be careful with these kinds of thoughts because they quickly turn into self-pity. I hadn't connected that caregiving for almost a decade had given me purpose, what I needed to feel good about myself.

Being crazy busy and problem solving was what I was used to, I lived in a state of business that kept me moving nonstop, I ate granola bars and handfuls of crackers on the go. I was lucky to shower quickly and get my basic needs met, I never minded it while it was happening, but what I was doing was slowly losing myself little by little so when faced with myself I no longer knew me, or maybe never did? I have been a mother since I was 22. I've dedicated myself to my kids and would do it all over again, I don't have regrets because I value my children. They are loved and one of my highest priorities, but I was out of balance. I suppose this is maybe a typical mid-life feeling of letdown, pondering this stage of life. Asking myself “why am I not where I thought I’d be at this age and stage in life?”

They wouldn't have a name for mid-life crisis if it wasn't a thing. More months go by and I experience continual ups and downs. The highs of seeing, hearing, watching my son literally turn into a man, a man I'm very proud of. One who is mentally strong like no other human I personally know. To the other end, who would really miss me if I were gone, and everything in between. I stopped caregiving for a quadriplegic and picked up a job caregiving for the special needs community. I figured it would be similar. I love my clients, but realized quickly that this is not filling me up but draining me more. I went through a stage were my job became looking for a job, I’d scroll through help wanted ads on multiple sites searching for the bells and whistles to go off to alert me of my perfect job. I’d read the help wanted ad and saw just how un-qualified I was. I have no college degree, I absolutely hate paperwork, don’t like dressing up for an office job.

My body has taken a toll over the years and I feel it. So, the physical jobs seem difficult. Then there’s the pride issue, now applying to similar places I worked at when I was 16 years old. Before I felt important, I was caregiver to my child in need, he relied on me, I had value. Now I’d seemingly lost my value. I was unable to put words to these feelings so instead I sink lower. I’m now literally counting the people in my life that I think “might miss me.” I knew this was irrational thinking but there it was in my head space. I know the good tools to fight depression. I got dressed every day, went outside, had a grateful list, but still felt empty. I kept looking for something new, maybe a mindless job, one that I don't need to think about when doing it that sounded good to me. Now almost one whole year has gone by. It’s my wake up call that I am wasting my precious time! What am I doing? I need to take my own advice, I tell others it’s okay to feel down but don't stay there. I would hear myself tell friends I can have a pity party for 20 minutes and then I have to stop, well it's been way longer than 20 minutes!

The transition was harder on me than I thought it was going to be. Since it was our top goal and what I wanted most for Zack I expected to feel elated, joyful and fulfilled. I was those things, just didn't expect the other side to be such a downer. It’s a new day, a new season of life which is a gift in itself. I had to go through this process to see more clearly. I am still not sure what job I’ll do next but my focus is getting back on track, remember those other three wonderful kids I talked about...well they are still here and deserve some extra mama time and maybe I’ll get myself a hobby or two!

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.