Sunday, June 24, 2018

Weekly Inspiration: Resilience and Chronic Illness

I struggled to come up with a topic for today's Weekly Inspiration post. I haven't written one in a while because our family has been struggling with some huge setbacks and massive unexpected problems - some health-related, though not all directly related to ME/CFS. The past two months have been one never-ending emergency for us, with things happening to our grown sons that have left us all reeling each time. This weekend, as things finally began to settle down (I hope!), it all got me thinking about how our life with chronic illness (16 years and counting now) has given us an amazing resiliency. We have been through SO much, so many times, that we know now when bad things happen that we WILL get through it.

Just a quick recap to bring you up-to-date since I haven't much time for the blog with all that's been going on lately. About a month ago, our 23-yr old son (with ME/CFS and three tick infections) found out less than a week before graduating from college with an engineering degree, after six long years of hard work, that one philosophy professor had failed him for missing too many classes this last semester. Long story short, my son DID graduate and is now taking a different philosophy class this summer to make up for that missing elective, but that week before graduation was very high stress and filled with uncertainty, anger, and panic. That same son has been struggling for the past few months with a downturn in his health (the reason for so many absences from class) that we can't explain and can't seem to influence (though perhaps this week we began to close in on some answers). He rallied himself to go to a huge outdoor music festival last weekend with some friends, and his phone was stolen.

While my husband and I were back here at home making calls to the cell phone provider and bank to fend off additional problems due to the stolen phone, our 20-year old son called from Italy, where he'd been enjoying a study abroad program with his college. He'd been assaulted in Rome - punched and kicked in the head - and had been to the ER and gotten 8 stitches in his temple. He was horribly shook up and upset. We spent the next week on the phone with him and with his doctors, the school, and the student travel agency. He'd had a concussion back in high school and was showing fairly severe signs of another one. He spent last week in his dorm room in Italy, with his eyes closed in bed in the dark, while his classmates enjoyed the exciting program they'd all come for. When it was clear he wasn't improving and needed to come home early, we made arrangements - at great cost - to bring him home. Our family spent this weekend all together again, here at home, healing, with our son constantly thanking us and saying how glad he was to be home! Fortunately, he is already showing signs of improvement, and we are hopeful that this concussion is not quite as bad as his last - we'll see his concussion specialist tomorrow.

Like I said, through all of this, it occurred to me that our last 16 years of living with chronic illness have created a resiliency in all of us that comes in handy in chaotic, stressful times like this. Some of what we've learned to do when bad things happen:
  • Take Time to Grieve - It's OK (and necessary) to acknowledge your feelings - hurt, anger, worry - and it's healthy to express them and band together to support each other. Sometimes, the grieving has to wait until you get through the crisis, but it's important to take time to cry and hug each other and let it all out.
  • Start Moving Forward  - I think this is the part that chronic illness has helped us the most with. We have been through SO many crises together as a family that the grief phase doesn't last very long - we quickly begin to look at what we need to do. With my older son's graduation last month, that meant meeting with the school's Disability office, talking to the appropriate dean, etc. Last week, it meant immediately contacting our concussion specialist (who actually sent our son a link to take a concussion test online in Italy so he could assess from afar how severe he was), contacting the school, contacting the travel agency...and when the time came, making arrangements to get him home as soon as possible. Moving forward means taking action, being proactive, and taking steps toward a solution.
  • Seek Support - In addition to my immediate family, I turned to an online Parents' support group I run on Facebook last week. My son's concussion was not actually an ME/CFS problem, but I knew they would understand what we were going through and how helpless I was feeling. They responded as they always do - with compassion and support - and I immediately felt much better just for sharing mu burden. I also got together with my two closest local friends last week, and talking to them was also hugely comforting.
  • One Day at a Time - when crises occur, it is so easy to get wrapped up in worst-case, what-if scenarios, but that only raises your stress level. It helps to just stay focused on the here and now - what can we do TODAY to move forward? In the case of my son's concussion, he also has a vacation on his grandparents' sailboat planned for two weeks from now. Instead of worrying about what happens if he's not well enough yet to go, we are just doing what we can NOW (seeing the specialist, following his recommendations, resting, etc.) and not worrying about what comes next. We'll cross that bridge when we come to it. We hope he will feel better and be able to go, but if not, we know we can get through it.
I know that our years with chronic illness help us when emergencies occur now. I've seen others around us make themselves crazy with worry - they ask how we can be so calm. Practice. We've been through so many other things and survived and came out the other side - we will get through this, too.

Remember this the next time you are blindsided by an unforeseen urgency. Take a deep breath and just take things one day - one moment - at a time and move forward, bit by bit.

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