Five years ago, I was lying in the ICU after my stroke when a nurse walked past my room and said, “You don’t belong here.” I didn’t look like I belonged in the ICU.
The clot-busting treatment had worked. My speech improved significantly from when I was in the ER, although slow and struggling to find words. I had called my mom because I wanted her to hear my voice and know that I was okay, and I don’t think she could even tell over the phone how much I was still struggling. So I looked pretty good, but my brain didn’t.
I medically belonged exactly where I was. I had just had an ischemic stroke and received a clot-busting drug, and there was still a risk of a brain bleed. I needed to be monitored closely, but that nurse couldn’t see any of that when he walked past my room. He saw a 46-year-old woman talking on the phone smiling. I had purposely made the decision to smile when I was on the phone so that my mom could hear it.
That moment stayed with me. Five years later, I still don’t look sick. Most people who meet me have no idea that I am permanently and totally disabled from my stroke. My aphasia is mild enough most people don’t notice it. They don’t see how hard my brain is working to process visual motion or how instantaniously movement can trigger pain. They don’t know that I close my eyes in the car, limit exposure to digital screens, avoid looking at the Tv, and constantly calculate how much stimulation I can tolerate. They don’t see the cognitive effort that can goes into something having a conversation.
My daughter Bailey was visiting this weekend, and she was telling me that the soccer field at her college had been changed from grass to turf. Even though the progression of the conversation made perfect sense, I got lost. I simply can’t keep up. I often need an escort through a conversation. While others can get from point A to point B on their own, I need to ask questions and have things repeated a few times before I can get there.
What makes this particularly frustrating is that I forget I need the escort. I spent most of my life being a quick learner. I expect my brain to understand something the first time because that’s the brain I used to. Then I’m in an art workshop asking the instructor to repeat the directions again, and a few minutes later I’m asking again, and I’m worried everyone thinks I’m stupid. That’s my ego, but its a very real internal conflict as a stroke survivor.
This is where invisible disability gets complicated for me. I can walk into that art workshop excited, happy, creative and enthusiastic. I can laugh and have a great time. I can go down to the lake with Bailey and sit in my raft. I can do my hair, put on makeup, wear something cute, work on my podcast, paint something, or post a happy picture. And sometimes I have this strange thought in the background: If people see me happy, will they still believe I’m sick?
I’ve talked about this with my psychiatrist because I sometimes feel pressure to qualify what people are seeing. If I talk about how difficult it is to live with my disability and chronic pain, and then they see me laughing and enjoying myself, will they think I exaggerated it? If someone asks how I’m doing and I say I’m doing really well, will they think I’m better and I don’t need help?
Living with invisible illnesses and disabilities result in this strange negotiation with ourselves. We want people to understand what we’re living with, but we also want to live fully. I’ve been thinking about this with my mom, too, as she goes through cancer treatment. When she tells me she’s feeling good, I’m thrilled that she’s feeling good but also want her to know that I understand feeling good today doesn’t erase everything she’s carrying. She can go play mahjong with her friends and have a wonderful time and still be a patient going through cancer treatment.
I want that same understanding for myself. I don’t have to perform my illness every day to make it real. I’m still growing into this. I want to be understood when I have a sharp pains in my head. Saying it doesn’t make the pain go away, but it helps me to share when its happening. I want someone to understand what my body and brain are experiencing even when they can’t see it.
At home with my husband, I don’t feel that same need. He already knows. He sees enough of my daily life that I don’t have to explain every symptom or prove anything to him. There is comfort in being completely understood like that.
Most people aren’t going to understand the whole picture, though, and I’m starting to realize that they don’t have to. People can see me laughing without seeing the constant pain I have. They can see me enjoying life without knowing how much recovery time I need afterward. They can see a happy picture of me and not know the work it took to put that smile on my face.
The happiness and disability can exist at the same time.
My sobriety has taught me a lot knowing more than one feeling to be true at the same time. Stroke recovery has expanded that lesson. I can experience pain and gratitude at the same time. I can have limitations and still explore new opportunities. I can grieve and laugh. I can have a terrible day with some really wonderful moments in it. I can also love my life and wish parts of it were different.
That may be the most important part for me.
I wish my head didn’t hurt every day. I wish my brain processed movement normally. I wish I could drive. I wish I could follow every conversation without needing my little cognitive escort to help me get where everyone else already arrived. I wish I could do many of the things I used to do without thinking about capacity, stimulation, or what something is going to cost me later.
And I still love my life. Those truths live together. I can acknowledge what I’ve lost without making loss my identity. I can respect my limitations while still surfacing joy wherever my capacity allows. I can build a beautiful life around very real limitations.
My recovery has taught me there isn’t a finish line. I can’t sit around waiting for a cure before I allow myself to fully live. If I make being cured a requirement for living, I will spend my life waiting.
People may look at me and see a happy, active, creative woman. Good. That’s only part of the picture, and there are parts they may never see. I don’t have to dim the joy people see in me just to prove the pain they can’t.
