When Dismay About My Illness Keeps Me Stuck in a 'Winter-Like' Mindset

Springtime doesn’t affect the physical part of my disease; however, it negatively impacts the mental part because springtime serves as a flashing-neon-sign, slap-in-the-face-reminder of all the ways my life has changed since becoming ill with an autoimmune disease.

My 10-year-old son was born in the spring. Each year, we celebrate his birthday with a mix of gratitude, awe and joy. But at the same time, in the back of my mind, lurk feelings of sadness, disappointment and defeat – for what I was like then and what I am like now, for all that is different and has not gone according to plan (including our family’s original intention to have more children).

My husband and I had always planned on having two children, but shortly after our son was born we began to consider the possibility that having two children might not work for our family’s dynamics. But before we could fully make the decision ourselves, it was made for us. I became sick when our son was 2, and diagnosed when he was 3. My treatment plan includes medication that strictly prohibits pregnancy.

Until I was 34 years old, I had foolishly grown accustomed to my body performing as I expected it to. I moderately exercised, managed my asthma with the occasional use of my inhaler and considered myself strong enough to do what I wanted to do – including long walks in my neighborhood or leisurely bike rides on my beach cruiser.

My body always felt strong enough to do what I needed it to do. I knew I could walk my fourth-grade students on a day-long field trip around the San Fernando Mission. I knew I could wait to pee until recess or lunch time. I knew I could skip lunch to have a parent conference and not eat until after school.

When I became pregnant I felt certain that I would manage it well. I told my husband I wasn’t going to have morning sickness or strange food cravings, and I didn’t. I was pregnant, and though my body changed, nothing else did. I took my fourth-grade students on a walking field trip to a neighborhood park just six weeks before my son was born. I continued teaching until two days before my son was born. I walked into the hospital determined to have a natural, non-medicated childbirth. And I did.

But that was 10 years ago. Now, my body no longer does what I want it to do. Oftentimes it doesn’t even feel like my body. It feels as if I am stuck inside an older woman’s body. A much older woman. A woman whose knees creak as she climbs up the stairs. A woman who sits down with her son to complete a floor-size puzzle and then has difficulty standing back up. A woman who sometimes can’t make it home from the market without fighting off tears – of fatigue, of pain, of frustration.

On a good day, I can still see my body as functioning, sufficient and operational.

On a not-so-good day, I see my body as defective, incompetent and failing.

Ten years ago, I felt strong and capable. My body was powerful enough to give life to a new human being. Now though, I live with a level of fear and apprehension I never had before. Before every summer family trip there are questions of “How will I …?,” “Should I…?,” “Can I…?” And it’s all because this body of mine is no longer under my control.

I often feel stuck in a winter-like time. A time of barrenness and dismay. A time focused on all the losses I have experienced including my teaching career, my limited mobility and my pain-free days. A time of sadly contrasting all my body’s past capabilities to my body’s current capabilities.

And then I look at my 10-year-old son who sees himself as capable of being “everything” (in his words) including a professional basketball player, a famous singer, a brave firefighter and a historic astronaut who will someday walk on Mars. He is confident, and his dreams and plans are limitless. It is in this way that my son is my role model.

I must continue to push myself to inhabit a more spring-like place. A place that is a chance for new beginnings and fresh starts. Because spring is a time of birth and rebirth. A chance to start anew with kindness, patience, understanding that is so easy for me to use with my son and so much harder to apply to myself.