On March 1, 2002, I suddenly became ill with an immune system disorder that dramatically changed my life. Two years later, the unthinkable happened, and our two sons, then only 6 and 10, also became ill with the same disease. Those first years with three of our four family members debilitated and often couch-bound were dark days. Eventually, though, through treatments, activity restrictions, and a slow process of acceptance, this life with chronic illness became our new normal. These days, I recognize that this tragedy actually had a silver lining and taught me some lessons about simplifying my life that I might never have discovered otherwise.
1. You Can’t Do It All. Like many people, I used to go full-throttle through my days. I plowed through each day’s to-do list as if I were running a race, and I put a lot of pressure on myself – and on my family – to do everything and not miss out. We now live a more peaceful life. I still get frustrated by my inability to do everything, but now I recognize how detrimental my perfectionism is to my health. I’m no longer capable of doing it all, and there’s an odd sort of comfort in admitting that.
2. Slow Down, You Move Too Fast. Our days now move at a slower pace. I know that I can’t spend all day running around or I’ll relapse. Our sons stick to just one outside activity at a time, and we know that it’s not the end of the world if we have to miss some event or activity. No matter what’s going on, I have to take an afternoon nap, which forces me to stop and recharge.
3. We Are Family. One result of slowing things down is that we spend more time together as a family. We try to embrace our necessary downtime and enjoy a movie together in the family room or a quiet game. We eat dinner together every night (even since our sons hit their teens), go camping when we have a free weekend, and we all look forward to our annual summer road trips together, when we travel at our own pace. Going through such difficult times together has brought us closer emotionally.
4. Sharing is Caring. Our sons know what it’s like to feel terrible and to be disabled. They both have a wonderful sense of empathy toward others, both within and outside of our own family. We have lived through some major challenges together, and we’re still here, together, facing each day and supporting each other. We’ve also been able to use our experiences to help other families like ours, which has been incredibly gratifying.
5. Find Joy in Every Day. Paradoxically, experiencing so much pain has helped us to find more joy in our every day lives. If I or one of the boys feels very ill, we focus on the little things that can add joy to an otherwise dismal day: watching a funny movie together, sitting on the deck in the sunshine, reading a good book. And on days when we all feel well and can do something more active together, we appreciate our good fortune more because we know how fleeting it can be. We have all become more grateful for what we have in our lives, especially the blessings of our family and friends.
I would certainly prefer a life without limitations, but living with chronic illness has taught us all some important lessons about living a simple, slower, more joyful life.