I am sad.

sometimes you have to feel grief before you can find delight again

photo credit: Joshua Woroniecki

A note: if you know me in real life, I’m diving deep back into brain retraining, which means I will not be talking about health issues, symptoms, and challenges very much when we see each other, because when we talk about something a lot we dig deeper and deeper neural pathways for it and it becomes more and more the default way we think.

But occasionally I take a break from the mental discipline of brain retraining work and give myself a few minutes to honestly acknowledge the grief and losses of having lived with a chronic illness, and a few weeks ago when I did that I wrote about it to process. I’m sharing because it’s cathartic for me, and because it also might help someone else to recognize where sneaky grief might be affecting them.

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Sometimes the weight of loss from ten years of chronic invisible illness sneaks up on me and punches me in the chest so hard I can’t breathe.

I miss me.

To be fair, there were a lot of things about the old me that needed to change. I needed to learn to be compassionate about others’ suffering. I needed to learn to temper my straight-shooter words with kindness and grace. I needed to learn to say “no” more often and to care a lot less about what people think about me (still working on that one to be honest).

But… there were some really good things about me that illness has stolen.

I used to be able to wake up and run a 5k and then go bench press my body weight just because I felt like it. Currently, it’s a marathon event to stand up long enough to make dinner or to fold a load of laundry.

I used to be able to travel solo with just a backpack, eating whatever I was served and sleeping anywhere I was offered. Currently, my body freaks out at the slightest hint of mold, forcing me to stick to a few known, safe places. And I have to be strict with what I eat and its timing or else suffer the consequences.

My brain used to be fast and sharp- math was easy and I remembered everything. Currently, it’s fuzzy and foggy and sometimes I can’t remember what the last sentence I read said.

I used to have steady nerves and muscles that could reliably put the bullet in the center of the target. Currently my arms would tremble under the (very light) weight of a gun and the gunshot would make me jump even though I would know it was coming.

I used to be able to drive 4+ hours without even thinking about if I could do it or not. Currently, I can’t safely drive at all.

I used to have the stress tolerance of a… whatever the most stress-tolerant animal is. The more freaked out you got, the calmer I would be. The higher the stress of the situation, the more on-point I was. Currently, I jump when someone slams a door, and don’t ask me to deal with a repair man, I’ll have a panic attack.

I used to be a reliable and hardworking employee, doing things fast and accurately. Currently, I’ve been unemployed for the last three years, because I never know if I’ll be able to drive or function from day to day.

I used to be able to work a full day, exercise, cook dinner, do some house chores, and do something social all in the span of fourteen hours. And repeat it day after day after day. Currently, I get overwhelmed and shut down at the thought of figuring out what’s for dinner, or trying to socialize with more than one person at a time.

Day after day, year after year, all the little things add up. Countless social events missed. Friendships that have faded because I can’t keep up with a “normal” life pace. Trips or fun things that I’ve had to say no to. Many words spoken to me (some ignorant but well-meaning, others harsh or intentionally wounding) that have critiqued and shamed me for things I have no control over, or that simply were not true.

And then there are all the “what ifs” that have accumulated over the years- What if I’d been healthy enough to have kids five years ago? What if I was still working, what job would it be? What if I could travel, would I have gone to work in the DR with my missionary friend? What if…

In easier seasons, I can more readily and joyfully see the good things illness has brought me, and the ways it’s changed me for the better. And, I do still have a sliver of hope that maybe someday, I’ll be well. But in this season, trapped in my house on the couch in my crazy body, trying to just get through each long day fed and alive, the losses are loud and the grief is heavy.

I miss me.

I miss living life.

And I am sad.