Connect Issues Winter 2021

FOR THE CAREGIVER By Ann Thal, Marfan Community Member My week begins on Tuesday now! That is the day of the week that my spouse, Julie, had her heart surgery. (How many weeks since the surgery, how many weeks in ICU, etc.) Julie has Marfan syndrome and,

p Ann Thal, and her wife, Julie Evonna, at the Cleveland Clinic on July 7, 2020, for Julie's aortic surgery.

Once we moved to the rehab hospital, I would go on a hiking adventure after hitting the gym, exploring beautiful lakes and trails. This truly restored me as I feel very connected to the outdoors. Now, I teach horseback riding and we time these outings carefully and around Julie’s care. Let People In: I am an introvert, so I found it challenging to talk to lots of people. I had a friends list that kept growing and I would write daily to a list of about 200 with Julie Updates, which I called Heart Beats. It was cathartic on so many levels. I shared what inspired me and recounted each day to our friends. I cherished emails and texts from friends and a few friends came to stay with me intermittently. I was grateful for the company. Lean on your friends and let people help you. This continues to be a valuable lesson for me. Look Inward : I love reading theologians from many belief systems and religions and found comfort and strength through their words. I also explore new music, old favorites, and music Julie and I loved together. Listening to podcasts during my workouts helped to settle my mind. I learned a lot this way and have one podcast that has really helped me with my meditation practice. I am fortunate to have a long-term relationship with my therapist and increased my sessions in order to process all that was happening. Physical Health : I would go for walks regularly. I worked out every morning at the gym following strict protocols to stay safe. I listened to music and looked for ways to feel more anchored through this surreal experience. My time at the gym always helped my endorphins! I was always so overwhelmed first thing in the morning. My morning sessions of cardio and weights helped me feel stronger for the day ahead. I made it a point to eat well and was so grateful to

after doing our homework, we headed to Cleveland Clinic for

surgery with Dr. Eric Roselli to have her mitral valve replaced, and her aorta root and aorta valve replaced and/or repaired. We planned for a six-hour surgery and arranged our pet sitters for about two weeks of care at our home in South Carolina. This is the short version: Juile’s aorta dissected at the beginning of the surgery and, before she would leave the Cleveland Clinic, she would visit the operating room seven times. She had numerous complications and was in an induced coma for two weeks while her chest remained open. She would spend three months in the hospital, one of those in ICU, before heading to the rehab hospital for three weeks to help her regain strength. As caregivers for people with connective tissue conditions, it’s likely that we all will experience caring for someone through major surgery. Also, as caregivers, we feel the enormity of our responsibility. I think each of us has to find a path that makes sense for our spiritual, emotional, and physical life. Julie and I still have a long road to recovery and every day I am grateful that we have this road to travel together. We work at celebrating the small victories. I remind myself to do the best I can and know that some days “good enough” is good enough! I wanted to be superwoman with Julie and some days that is just not possible! I had to learn how to take care of myself through this to be there for Julie. This is some of what I did during those two months and since: Get Outdoors : I never missed a sunrise or sunset. The hotel on Euclid and my short walk to the hospital afforded me beautiful views of the sunrise and, when I looked left out of my hotel room, I saw the most glorious sunsets somewhere over Lake Erie.

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