Something Resembling a Life

Looking Primary Immunodeficiency Straight In the Face

Having an incurable chronic illness is no picnic. There’s no single aspect of it that I can ever recall as being easy. The road to diagnosis was a long one, and the journey since has been bumpy, to put it mildly. Lately, I’ve been valuing the opportunity to look back on things as I’ve been contemplating how to tell the story of my illness. Facebook’s “On This Day” feature can be especially helpful in that process.

Not to pat myself on the back or anything, but I’m a trouper! Facebook reminded me recently that I quite literally woke up with a fever on vacation in 2014 and spent the entire day at Disneyland anyway. LIKE A BOSS. Or a crazy person. Don’t judge me, I wanted to see Radiator Springs! I’m guessing I’m not alone in that. I don’t want to let this disease cost me my joy. I try to at least be aware of when it is, so I can embrace those feelings and move along. That’s where my wallow or grow philosophy really hits the pavement. It’s not easy and I absolutely pay for it sometimes, but I also get to see far-flung friends, do some pretty cool stuff, do meaningful work, and be an active part of my community.

I see many patients who choose to hide themselves away from the world under the guise of protection. I understand that impulse, I really do. I know if I’d been diagnosed as a child my parents (erhm, Hi Mom!) would have put me in a bubble if they could. Even at 19, I think my mother would have preferred that approach, but she understood then and does now that there’s no point in leading a life barely worth living.

That’s really my end goal - having something vaguely resembling a life. I don’t need much, just a few days that I’m not flat on my back and unable to put one foot in front of the other. I also value the will to push through when I don’t think I can and (hopefully) the wisdom to understand when I shouldn’t. I’m working on that last bit.

A big part of being able to push through when I really want something has been my acknowledgement of my own need to take better care of myself. I need to engage in things that feed my soul and take me out of the daily grind of work, obligations, and illness. I occasionally need a mental health day where I sit on the couch, binge watch Season 3 of Grace and Frankie, and do absolutely nothing of value. I need to give myself permission to be a barnacle that is just along for the ride. That is 100% the truth. I just need to be a lump sometimes. It’s not ideal when there are a thousand things competing for my time and attention, but it’s the truth.

I also engage in things that speak to me creatively. I love to cook and bake. I often find that looking at cooking websites, watching food shows, trying different things, and learning new techniques really feeds my soul. In general, I’m happier when I’m challenging myself and pushing to expand my skills and knowledge. That extends to many things I enjoy - reading, crafts, etc - and the ability to combine that with creative expression is really meaningful to me.

Find those things for yourself. Try something new. Find different hobbies that feed the you that you like best. Don’t know the best you? That’s your challenge, then. Find that soul person and feed them. That’s how you form a life that is worth living. That’s how you know you’ve grown, and when you’re feeling trapped, you can tap into those things and engage those parts of yourself. It can help you regain control and get out of the phase that feels like going in circles.