So Long To Healing
There comes a point when building your best life is more important than chasing the wellness you’ve lost.
Dear friends, family and well-meaning acquaintances:
I know that you care about me. Every time you ask how I’m feeling or if I’m heading back to work soon, I know that you’re asking because you want me to be well. And there was a time when I wanted that for myself too, when I wanted that more than anything. A time when I spent all of my energy and money just trying to be well. But something has changed for me that I really need you to understand.
After years of trying every diet and taking every pill and detoxifying in every possible way, I realized that my life was passing me by. I realized that if I kept putting all of my resources into the dream of one day healing, then I would have no resources left for writing essays like this one or for really connecting with the people that I care about or for savoring the perfect solitary moments that still sometimes come along. I realized that my life, not my wellness, is what I care about the most.
I’m going to say that again, because I’m worried that you won’t understand the distinction. I’m worried that you’ll think I’m giving up. It is my life, and not my wellness, that I care about the most. And because you care about me, I hope you will support me in building the best life that I can.
There are small ways that you can support me in building this life. Instead of asking me if the doctor knows what’s wrong and how to fix it, you can ask me which of my symptoms is making it hardest for me to live my life right now. Instead of sending me articles about medical research and miracle cures, you can ask me if there are any small changes you can make in our relationship that would help me enjoy the time we spend together without exacerbating my symptoms.
For me, right now, one of the easiest things that you can do is to schedule our phone calls in advance. For me, right now, unplanned conversations use up so much energy that I often end up shaking and unable to think clearly. On days when I have unplanned conversations, I must go to sleep hours before my normal bedtime, because I’m unable to do anything else. But this suggestion isn’t universal. It might not be what I need in the future, and it might not be what other sick folks need right now. Instead of asking how you can help us heal, please ask how you can help us live.
Sometimes I spend days, weeks or months lying down and consuming passive entertainment like television or audiobooks. When I was still focused on healing, this time was a constant reminder of how much I was failing. Now that I’m focused on living, I am able to see this time for what it really is: much-needed rest. The best gift that I can give myself is to enjoy that rest without guilt.
Sometimes I bank my energy for days, weeks or months so that I can spend time with you without appearing to think about my health at all. When I was focused on healing, I could never enjoy this time because that would distract me from my very strict treatment protocols. Now that I’m focused on living, I’m free to savor time spent with people I care about, and I’m free to take calculated risks that may set back my health so that I can prioritize spending time with you. The best gift that I can give myself is to enjoy these moments without guilt, too.
Spending all of my time, money and energy on healing made me miserable. I had to weigh every decision with the question: will this make my health better or worse? One of many problems with this question is that none of us can accurately predict what will make our health better or worse. So after years of asking this question without getting well, I began to ask a different question instead: will this make my life better or worse? And when I started asking that question, I learned something surprising. Being sick does not make me nearly as miserable as the constant pressure to heal does.
So if you see me and I look happy, I probably am. Sometimes I’m having a great day with few symptoms, and I’m happy to feel like I’m living a normal life. But I can be happy when I’m in pain, or when I’m shaking, or exhausted. Allowing myself to feel happy even though I’m not well has been a revelation. Do not mistake my happiness for wellness.
And if you see me and I seem sad or angry or grief-stricken, I probably am. I felt all of these things when I was trying my hardest to heal, and I bet you feel all of these things sometimes too. Wellness is not a shield against difficult emotions, just as effectively processing your difficult emotions is not a guarantee of good health. I have been sick for long enough that it feels normal to me, and I feel the same range of human emotions that you do. The only difference is that sometimes I’m feeling them while I’m also feeling nerve pain, or whatever.
I’m not trying to heal, I’m trying to live. I hope that you will support me.
If you’re chronically ill and you related to this letter, then you might enjoy another letter that I wrote just for you. And if you want the people in your life to read this letter, I hope that you will share it.