I Miss Having Faith in My Body

I have a memory of a feeling that I miss. In my memory, I have a young body that feels lithe and powerful. I can do cartwheels, handstands, throw curveballs, hit a fastball, make the shot. I am athlete, trained to move efficiently, react quickly, and my body automatically does what the brain signals, smoothly. Maybe I get the occasional injury, but I have no doubt I will bounce back. I feel strong.

I miss this feeling, the feeling that I can trust my body to follow through on what the mind wants to do. The faith that my body will carry me through a full, active life.

I know this memory is partially fiction, as all memories are. It’s true that I was a talented athlete, but I didn’t see my body as lithe. I had a negative body image, falling prey to impossible standards, seeing myself as unforgivably fat, compared to other “pretty” girls. Looking back objectively, I was also always getting hurt or sick, and I stopped “bouncing back” by the time I was only 16.

But I still grieve this feeling

Even if the full reality of is questionable. I live with the fear that an errant sneeze or cough will have me bedridden for a week, setting my mobility, fitness, and pain back months. I feel as though if I don’t dedicate >40% of my attention to how I’m moving at any moment, my body will fail me. When I feel a sneeze coming on, I have trained myself to prepare quickly– to relax my muscles and get into a neutral posture so nothing goes “pop.” When I walk, I have to focus on not hyperextending my knees, using my hips evenly, and not locking up my torso. It’s exhausting. If I am holding something and get distracted, I will no longer be holding that thing.

I do have hope that some of this will become automatic. Since my HSD diagnosis, I have been working 1:1 with a hypermobile-expert Pilates instructor to re-train my proprioception and teach my body and mind how to move safety. But right now, I’m exhausted, and I don’t know how much better I believe it will get. Catching a cold, straining a muscle, or needing another surgery will always set me back. What does my bodily future look like? I’m only 33. How much higher will the highs be and how much lower the lows?

And a question follows that haunts me.

Should I have kids?

Can my body handle kids? Do I have enough energy?

Many pregnant women report feeling that their bodies are alien to them during their pregnancy. Their organs are shifting. Their ligaments are becoming more lax. They can no longer trust their bladder. They no longer know whether they’ll have the energy to get through the day. There is a stranger inside of them, kicking and rolling and growing.

My body already feels alien to me. I can’t trust it when I get up in the morning I don’t know how I’m going to feel. I don’t know if my joints will be so stiff that I get a wave of nausea when I try to get out of bed. I don’t know if my elbow will feel good enough to be able to lift a glass of water, much less a child.

Having children means a lot of things to me. It means wearing your heart outside your body. It means being able to guide and shape a new mind in the world. It means living in awe at how this fresh mind, this brand new person experiences and grows and learns in ways that you couldn’t have ever anticipated

I would love to experience that, but it’s terrifying for an endless list of reasons. Wearing your heart outside your body sounds both wonderful and absolutely downright horrifying. I’m already anxious all the time. But to amplify that by having this little life that you’re responsible for? That you love more than anything in the world? A world that is dangerous in so many ways to creatures with fragile, fleshy bodies. It’s so easy to lose everything.

Having kids also means being sick constantly, even for people with healthy immune systems. Kids are constantly bringing spreading bugs from daycare, school, playdates. Illness gets passed from child to child to parent to parent to siblings to teachers to parents in a massive loop.

For those with less than perfect immune systems, this is already challenging. For me, asthma amplifies every cold, and my hypermobility sends my pain through the roof and destroys my mobility as my muscles tighten in protective mode. I also already suffer from chronic fatigue and drowsiness, despite fully treated sleep apnea, and I work full-time in an intense career (which I can’t afford to quit).

Given my struggles with chronic pain and fatigue, knowing they come from a genetic condition without a cure,

Here is the crux of my fear.

Will I be capable of being a present, caring mother? Of giving my children the time and attention they deserve? People say that you’ll figure it out you’ll make it work, but I don’t know whether I can trust them. I don’t even trust my own body.