Hello Again! Sorry it’s been so long! You know the life of a Spoonie can be unpredictable. Are you ready for the awesomeness of Part 2 of my life? Part 2 has been full of more challenges and gifts then I could have ever wished for. However, before we get to there are a few things I forgot to mention.
In 2009, with the help of Eric Cole, the founder of the Dandy-Walker Alliance I wrote a resolution to make May Dandy-Walker Syndrome and Hydrocephalus Awareness Month in Michigan. The Dandy-Walker Alliance is the only national organization that advocates for people and families affected by Dandy-Walker Syndrome in any one of its several forms. That resolution was introduced and passed in the State House of Representatives and I was there when it was!
In January of 2010 when I was released from the hospital, in a very weak state, I decided it best to withdraw from classes and take care of myself. Several weeks after I left the hospital I went to see my eye doctor who informed me that there was nothing that could be done to correct my lazy eye that had “come back”. I had, had eye surgery as an infant to correct my lazy eye and yet the guy who I had been seeing all these years told me there was nothing to be done. I got mad and started to see if I could learn more find a solution. I then stumbled upon my current Neuro ophthalmologist who told me that if he didn’t operate I would lose sight in my left eye. Well, I let him cut me open in March of 2011 during Spring Break of my first semester at Madonna University.
My time at Madonna while enjoyable was full of pain and struggle. I started at Madonna in January of 2011 pursing a Nursing Degree, After struggling with classes I was blessed to spend a day with one of the, Religious, Sisters on campus who happened to teach in the Nursing program. During the day she took time to get to know me and about my health. After a full day she made the suggestion that I look into Pastoral Ministry, then another Sister recommended I look into Hospice.
And here I am several years later 2 degrees and no job… While at Madonna I had a lot of fun fulfilling experiences. I volunteered in the Campus Ministry office and worked on the retreat team and was the leader of a Franciscan Spirituality group on Campus. I went to a conference in DC and spent a weekend at St. Katherine’s University surrounded by Sisters for the first Annual National Catholic Sisters Week kickoff event! All of this was exciting and a bit challenging. I had surgery after DC to switch shunt valves and tubing because I was over draining or so I thought, and the tubing was causing me a lot of pain. After that I was nominated to accompany the same Sister who suggested I look into Pastoral Ministry to St. Kate’s. That was a fun weekend but I was still feeling a bit off, but I was able to fake my way through till I got back at school.
At MU I had daily contact with a RN, and many of my instructors that semester I had, had previously so I couldn’t fake my way through… Despite all of that I somehow managed to make it to graduation in May 2014 to obtain my BA in Pastoral Ministry.
In the fall of 2014 I started the last part of the hospice program! I moved back home, and within a few months was living in a new town surrounded by new people as I started the first of two internships at United Hospice Service. I did a little of everything and was able to spend time with all the employees and learn about their different jobs whether it was the Volunteer Coordinator or the IT person, though a great deal of my time was spent going on home visits with the hospice chaplain. I really enjoyed my time interacting with patients and families, bearing witness to their struggles, joys, and life. This experience taught me a lot about myself as well as the ability of the human spirit and body to flourish despite illness and hard times.
My year with hospice led to my graduation of May 2015 with a BS in Hospice and Palliative Studies.
Since my time interning at the hospice I have become a volunteer and do my best to go every Tuesday to help in the office. I’m also working on getting back into direct patient care. Since the series of surgeries I just went through I’m working on regaining balance and confidence, plus having hair is important. I only say having hair is important because I don’t want the patient’s attention on me. That will come in time until then I just keep pushing on doing what I need to.
BEING A SPOONIE
I’ve learned that being a Spoonie is not for the weak, we are some of the strongest people you will ever meet. Anywho, if you have any questions for me please comment or drop me a line on Facebook. I am here to share my story and experience of how I got through school or came to terms with my illness. I want to hear from you guys. “What do you want/need to hear?”
Article submitted by Kate Dekoski