Meet Julie. This avid hockey fan has been through a lot in the last few years. Due to some things that happened to her, she went from being an occupational therapist to needing supports and services herself. She’s learning to accept her ‘new normal’, and she uses humor often deflect the chaos going on in the system. We’re so fortunate to have her as a member of the Network!

What's your story?  Tell us a little bit about yourself
Julie was a pediatric occupational therapist and a manager at a clinic; she also worked with the babies at a local hospital in the NICU. “My forte was older children and babies,” she says. She also worked and loved the Early Intervention System. Since she lives right on the border, most her stuff is/was in Illinois. She saw some kids in the water near Kenosha at the Pleasant Prairie RecPlex as well where she worked with children of all varying abilities. She had her OT license in both IL and WI. She shares that she was trained in a variety of different skills, but she was certified in aquatics and started the aquatics program at her clinic for many children. She also took older children with various abilities into the Boundary Waters and the St. Croix River. “I taught everything from adaptive paddling to cooking on an open fire,” she tells us. Personally, she did a half Iron Man for cancer, two marathons, and a multitude of half marathons and triathlons. She loved hiking with her dog Porter (and at that time Remmie too) and husband Kelly. “I also loved kayaking on Lake Elizabeth which is just a block down from my house- the main reason why we have this house,” she exclaims!

Then, after nearly 20 years of treating and being active, Julie suffered a bilateral Pons vertebral dissection or in other words, a severe stroke. Doctors said it was due to COVID, even though as a health care worker, she was vaccinated. She was in a drug induced coma for over a week. “I will always remember on 7-2-21, I went walking into the ER and then months later when I was finally discharged, I could not walk, I couldn’t talk, I had double vision and numerous other things,” she shares. Due to being so sick, she was not moved very much and suffered a severe sacral wound that required two surgeries. She shares that ,to this day, she’s still dealing with this. Unfortunately, she doesn’t remember much of her hospital stay. She remembers it being a dark time for her because she went to completely independent to dependent. “Even though, I worked with children bridging out to the ‘real world’, I was not capable of doing this or at least I thought so,” she says.  She’s trying to accept and manage her new normal. Thankfully, even though she was in pediatrics, she has many resources available to her. She jokes, “sometimes too many- you know the adage ‘do I say, not as I do’- well that totally rang true!” She shares that she uses a wheelchair, but her vision has slightly improved. She still has difficult writing and typing. “Yes! I am an ot that has difficulty writing, typing, throwing a ball and talking normally,” she tells us. She hasn’t held a baby since her stroke because, right now, that is too hard for her both emotionally and physically. Even though her talking has improved, she still has not talked on the phone. “Yes, I definitely could use adapted equipment to help me, but what I have found is that I tend to lean on the adaptations and not push myself, so, for the more expensive AT (assistive technology), I have tried to do without,” she explains. She still renews her ot license for IL even though she can’t treat, and she has renewed her aquatic certification even though she can’t swim or breathe properly in the water. She shares that she lost her job in the NICU right away and she isn’t a manager anymore. However, thankfully, the owner of the clinic where she was a manager is one of her best friends. She’s able to go there to the meetings and she’s involved as much as possible, but she admits is hard. “I have seen 2 managers go through and of course you compare. I miss treating more than ever and I see the younger therapists and I yearn to be where they are,” she tells us. She has most of her cognitive abilities, but she  realizes that she has lost some. “I have cognitive fog often. I definitely cannot say what I mean. It’s amazing on what all the things I want to say, but can’t,” she explains. She has to take continuing education for her license, but most people don’t know what she has gone through. “I have no idea what my next path will be, but, obviously, it will have something to do with abilities and awareness. I may or may not be ready for it but I will adjust,” she enthusiastically says!

How are you involved with self-determination? What advocacy things are you involved in?
Advocacy is still fairly new for Julie. “What I have come across- if it’s visible, people are more interested, but, if it’s not visible, then I think most people are ignorant,” she tells us.  She’s involved with the Independent Living Council of Wisconsin where she serves as Secretary and the Assistive Technology Council of Wisconsin. She’s also on the board for Camp Avanti which is the camp where she used to take the kids to the St. Croix River. She explains that the camp was in Amery, but it just moved to MN. She also tries to visit her representative, Bryan Steil, when he’s in town, but it can be challenging because she doesn’t drive and doesn’t talk very well.

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Due to the system being in such chaos, Julie often uses humor. “Yes, it can be a deflection, and often because I do not talk very well, people don’t get my jokes, but one has to relax and smile at the stupid things that might have been done or said,” she says.

What tip or resource would you like to share with people who want to be more self-determined?
To be more self-determined, Julie’s tip would be to learn from your mistakes; you will make plenty and that’s ok. She also encourages people to do what makes you happy. She explains that if you want to write your Senator, then do that.  “I’m not a huge advocate because that stuff doesn’t make me happy and, for me, it takes me forever to do it. Life is too short,” she tells us.

What are some of your hobbies?
Julie loves to listen to audiobooks, take or watch her dog out to play in the backyard, exercise, go for hikes, talk to her dog (she doesn’t have to repeat!), and laugh. She also enjoys just hanging out with her husband, watching movies, and especially watching college hockey. Her favorite team is the University of North Dakota. Why UND, you ask? She explains that her brother, her husband, and Jonathan Toews (he used to play in the NHL for the Blackhawks—now, he’s on the Jets!) all went there!

***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.