I never was able to get a job as a young teen. Many kids when I was sixteen were getting jobs. My job was being home.
Huntington’s Disease consciously and subconsciously made me a nervous wreck. I stayed home instead of getting a job to occupy myself and learn important skills because I was afraid something would happen to my mom. I was afraid she would cut or burn herself while she was preparing a meal. I was afraid she would trip and fall and break a bone. I was afraid she would take a nap and never wake up. Some pretty rational thoughts for someone in an HD family, irrational thoughts for someone “normal.” So, I made my job mom-sitting and protectoe even thought at this stage of her HD she didn’t need that much care.
I missed out on a lot of work related skills. To this day I still have only held two “jobs,” if you’d even call them that. Babysitting and a Professor’s assistant for a semester. Caregiving at home was all I knew. So after my mom passed away, I became more jobless than I was to begin with. This disease had made me afraid of many things in the “real world.” I went from a semi-outgoing and loud teen(13-16) to a quiet, kept to herself, shy teen/young adult. One thing I can say is that while I may lack the skills that others may have gotten through a job, I have gained other skills different than theirs through my years of caregiving, and just living my life the way I have.
I learned to be patient, compassionate, motivated by bad situations, perseverance and emotional strength. So while I may not have the social skills that I once had, and wish I had now, I have qualities that make a good person and that is all I ever wanted to be. Now, at 22, still shy as can be, I am pushing myself. I have been for years now, trying to break the shell I have off completely. My shell has cracks but it still holds on. I am now taking steps to find a job and get some of those skills I missed out on. While thinking what type of job I’d like to be my first I sat and thought, pizzeria? Teaching Assistant? Convienece Store? Then it hit me. I want to try to work in an environment I’m used to. It is my goal now to try and find a place such as a nursing home or assisted living to work if not hands on with the patients, then a receptionist or something just being in the type of environment I’m comfortable with. My job as a caregiver for my mom may be over, but that doesn’t mean I can’t care for others.
I will get there. Perseverance, motivation and care is all I need, at full force, to push myself to get there. So, just when you think, “I’m not good enough, I can’t do it, everyone else’s lives are so normal,” know that you are good enough, you can do it, and you are normal, things are just tougher when adding in HD. I’m still teaching myself that those things are true, but like I always say, we’re in this together.