I got sick on October 6, 1994. Writing a memoir that spans almost three decades requires a lot of self-reflection, not only about what I’ve been through but about the choices I made, what I got wrong, and what I could have done differently. Sometimes, looking back feels like looking at a different person.
I feel such compassion for the young woman who got sick twenty-nine years ago. She was building her career, and was newly in love. It makes sense that she trusted the doctor who said she had a virus and would feel better in a few weeks.
Twenty-four years ago, her doctor said that people with ME do not get better after five years, and she thought her life was over. I wish I could tell her: Not yet, my dear.
Seventeen years ago, she began to invest all of her energy and effort in advocacy because she was trying to make something good from her pain. Yet I wish that she had held some energy back for herself. She didn’t see it at the time, but she could have experienced so much more happiness if she had approached life with more balance.
Ten years ago, this woman was bending beneath the weight of her suffering. She had no idea that she had not reached the bottom, that things were going to get much worse. It would have done no good to warn her.
Eight years ago, she thought she had triumphed–not over illness, but over grief. She was so certain that survival was enough, even akin to winning. I wouldn’t tell her otherwise, even now.
I have felt every possible way on my sickaversary, from numb to content. Now here I am, looking back over twenty-nine years of illness. Doctors were wrong. I was wrong. Sometimes, what looked like the right thing to do was more harmful than I realized. It has taken me this long to learn that we cannot predict the future, and that we can take nothing–absolutely nothing–for granted.
For a long time, I have struggled with the impermanence of existence, the reality that everything changes. Impermanence can feel like a liability or a gift, but it is a fact regardless of how we feel about it. The challenge is what we do in the face of change. Things go right or wrong, and all we can control is how we respond.
If I could reach through some crack in time to give my younger self advice, I wouldn’t warn her about what was coming or try to direct her path. I would simply tell her what I have learned:
There are times of great hardship and times of great joy, and there are all the choices you make along the way. It’s the choices that matter.
Lovely. Just beautiful. And heartbreaking at the same time. Xxoo Rivka
Beautiful post, Jennie
You are a very wise and inspirational woman. Thank you for sharing your experiences!
Love you much!❤️
Love you too!
As always, wise and inspirational! When I read something that is written exceptionally well and beautifully, I kind of hear the words in my head as music; I frequently hear music when I read your writing. Looking forward to the book!
Carla, what a beautiful gift your comment is to me!
I got sick in fall of 1991…during college. I’d like to know more about what you’ve learned. Mine, like many of yours, has been a very long, challenging journey with lots of frustration, hopelessness, disappointments, and shattered dreams. I’ve managed to find some silver linings, and joy and hope tucked in the crevices. Over the years, I’ve identified different conditions that could be treated and I’ve gotten so, so much better. I’m beyond grateful for that and for all the good I have in my life now. It’s not the life I hoped for. But I am actively working to grieve the lost opportunities, the sadness, and the embrace the realities of what my life has been and is. I know I am fortunate. My health rests on self-care and maintaining balance. I am hopeful and ready to build a life from where I am now.
I’m very happy to hear this!
I’ve been ill since 1989. I am still grieving the loss of dreams but also trying to enjoy those things in the present are that are still good. It sounds like a paradox but my illness has taught me that both grief and joy can exist in the same space.
I have also learned to advocate for myself with doctors. The internet community helped me enormously with that and I am grateful to them.
good to hear from you again, Jennie, though the news is not all good–seems there is no such thing these days. Th length of your
occupation by ME really hits me—mine began around 2007–myb 16 years or so long enogh, though the last 3-4 years have been largely prempted by Covid. I have avoided both Covid and the vaccines–but not ald age, now 90. Verymuch limited in my activities these days, but had been very active until ME hit me. These days I cannot tell hoe much of my state is due to ME and how much to just plain old age. I suspect it does not matter much–both ways, my life is nearing its end, and some of it- though of course not all, was good. Love, Chris
Chris, it is so lovely to see you here again! I was just thinking about you last week, and hoping that you would see this post. xoxo