The first thing you notice about Luke is his smile. Even behind his mask, his smile lights up his face. He lets me know that he is a little nervous about this interview but is glad to talk to me about his experiences. His job coach, Mike, accompanies Luke. He tells me that Mike is a good match for him and even though he liked the other ones, there is something about the way Mike talks to him that is more soothing which is what he needs to be successful.
The Iowa City Employment Systems program has served Luke for around six years. When he and his family moved to Iowa, he first attempted to work as a mechanic but it made him anxious. He now works for NoDo downtown as well as vacuums carpets for Houser Enterprises. Systems helps Luke get his jobs and ensures he keeps them by providing a support staff called a “Job Coach”. A Job Coach can provide additional training and support so people are able to maintain their employment.
Keeping his job for as long as he has is a source of pride for Luke. “Many of the guys where I live don’t have jobs and don’t have anything to do all day.” Another source of pride is that he has been able to maintain his sobriety for 17 years. When Luke was in his teens, he struggled with staying sober. His parents, Linda and Brad, put him in different schools and rehab programs that they hoped would help him. What they did not know at the time was that Luke was developing schizophrenia and was using substances to try to self-medicate.
They finally got the answer to what was going on while they lived in Texas. Luke went to the airport and insisted that the Queen of England was coming on her personal plane to pick him up. He was diagnosed with schizophrenia after a lengthy hospital stay. While Linda and Brad hated that he had to get to the point of a breakdown, they were relieved to have an answer to what was happening to their son.
As a family, they are very open to discussing his mental health struggles. Luke talks about how he manages the voices. He stated that he has to ask people if they said certain things to him, especially if it makes him upset. He has trained himself to not think about things coming up too much. Otherwise, he gets anxious and he starts to hear the voices. I told him that seems tough to do. He stated that he gets used to it.
I was able to talk to Linda and Brad over the phone after talking to Luke. They are mental health advocates and hope to help others by telling their story. When they first moved to Iowa, they stated that things were messy. Luke was still trying to find the correct medications and he spent time at the University of Iowa psych unit.
About two years ago, he became much more stable. They all felt comfortable with Luke living on his own with the support of a service provider called IMPACT and Systems Unlimited. Unfortunately, COVID-19 hit the area soon after. Systems worked with area employers to help ensure people served stayed safe while being able to maintain their employment. While in quarantine, he stated he would not have made it through that time without his dog Baxter.
Talking to Linda and Brad, they were able to tell me about their struggles as parents. They are a close-knit family and have been Luke’s main supporters even during moves across the country. They currently are his Guardians and Medical Power of Attorney when Luke is too ill to make these decisions for himself. Linda also used to be Luke’s payee but recently handed that responsibility over to Systems Unlimited’s payee program. “It was tough to let that go,” Linda stated. However, being his payee put a huge strain on their relationship, as Luke is very money focused. She stated that she now wished that she had done it sooner. “Mel and Carrie in the payee office are wonderful!” She can now focus on just being Luke’s mom and advocate.
When I asked Luke and his parents what they would like people to know about him, they both stated pretty much the same thing. Luke wished people would not be so scared of his diagnosis. He has a good friend at his apartment complex but he would like to find a special someone. His parents stated that they wished that there were more opportunities for Luke to find friends that are more like him. Day programs are not set up for people like Luke and hoped that Systems or another agency would come up with something.
Brad and Linda have recently made the decision to move to Minnesota to be with their daughter and grandchild. This is a big step for the family. “Luke is invited to move up with us, but has chosen to stay. I feel confident with the support he is receiving that he will be ok.” However, it is known by all that if Luke needs them, they will not hesitate to come back to help. For Luke’s part, he is excited to have this separation. He stated he owes so much to his parents; they got everything set up for him. However, he feels the distance will do them all good. “My birthday was last week and I turned 40,” he stated with a smile. “I’m ready.”
May is Mental Health Awareness Month. One in five adult Americans experience a mental illness in any given year but less than half will get treatment. If you or a loved one could use mental health support, check the following resources:
- National Alliance on Mental Illness | www.nami.org
- Mental Health America | www.mhanational.org
- Iowa Crisis Chat | www.iowacrisischat.org
- Substance Abuse and Mental Health Administration | www.samhsa.gov
