More Scribbles

I wake up to the sound of the deadbolt turning. All at once I’m comforted and oddly upset. It’s 630AM. On a normal day, I’d be hitting the snooze on the alarm that isn’t set right now so I could eventually get up and take him to work. But today is Saturday. We are both off from work, but he is gone spending time with his dad. They don’t do it often, so I’m glad he is going. And yet, I hate when he is gone.

I can’t go back to sleep. There are storms raging outside, the booms lighten the otherwise gloomy sky. It keeps raining. It feels like home.

I decide it’s time. I change and tie my keys into the thumb-hole on my running shirt. This is crazy, I shouldn’t be doing this. Not only because of the storm, but because of my health and the lack of him being around. I could get hurt and no one would know or know how to help me. I tie my shoes in stages – tight, tighter, tightest. It’s still raining outside, but only light mists fall now.

I run between bus stops, then walk. I run downhill and pick up speed. I walk now, watching the lightening dance in the sky. It’s so beautiful. I should be afraid of it, but I’m not.

___

I get on the treadmill, my familiar foe. I walk slowly, my joints gently releasing what feels like creaks but make no sound. I increase speed. I set the timer to count up, marking my time as an accomplishment instead of a fraction of a suggested time.

Five minutes.

I increase the speed to a job. Suddenly, it’s like I never stopped running. 30 second, 60, 75. I have to stop – not because I can’t breathe or because I’m going to fall, but because my thighs have found each other unpleasant company. If I had pants, I could have gone longer.

I really miss running. It’s like being alive. Nothing else makes me feel that way.

Pages from my notebook

There are some things that I don’t even share with you guys. Weird, right? I share pretty much everything with you. So then I thought maybe I should share what I don’t share and turn it into what I do share.

Oy, I’m dizzy from that sentence. Here are some random scribblings from my notebook:

I am not my flesh and bones. They fight themselves. I do not have to fight myself and make it worse.

There is a civil war going on in my body. Humira was winning for a while, but began to fight a losing battle. Time for Enbrel reinforcements! Abraham Lincoln said that a house divided cannot stand. Some days, I hardly can. Like Lincoln, I will not give up the fight.

I am not my illness. It does not define me… But if I have no memory of a me without illness, then who am I?

Why do I get to suffer? Why does it always last? Will I ever get better? What is ‘better’ for me anyway?

It is so hard to be patient – with the situation, medications, myself. I virtually always had this. Why can’t I get used to it? Why can’t I accept it as my life? Why can’t I just be patient instead of a patient?

I do not push myself when I should, and I push too much when I shouldn’t. Work on this.

Forgive yourself. It is not your fault. Illness isn’t caused by anything you did and in no way did you deserve it. You were five. About the only bad thing you did was blame Kelsey for things you did so you wouldn’t get in trouble… Although, that was pretty horrible. Talk to her more.

I fear my condition getting worse. I’m afraid that I will begin to lose the control I do have. I am terrified of needing ‘help’ – assistance devices, help getting dressed, help showering or bathrooming. Definitely most afraid of the last one.

I feel scared about losing my will to fight for myself and having to ‘give in.’ I have come close so many times. What will be the last straw?

I fear being alone because my illness becomes too taxing on myself and others. I’m afraid of dying along and not cared for in a horrible nursing home like my great grandma Kay [who died of complications from MS]. She deserved better, and I deserve better. I don’t ever want to be in a nursing home, no matter what else happens. I miss her so much. I wish I could have gotten to know her as an adult. On the other hand, she’s not hurting anymore, not confined to a go-cart. Jeez, I’m jealous.

My illness does not define me. But it does though. It is why I do what I do. Without it, how would I have turned out? I probably would have ended up playing softball and doing track, going to Harvard like in my dreams, and studying law or medicine. Instead, I’m here. I’m on this cold call floor captioning calls for the deaf and hard of hearing. I live in a great city with good insurance now. I have a wonderful boyfriend and amazing friends I probably never would have met. So… maybe it’s worth the pain?

Normalcy.
There is no normal anymore, just different circumstances surrounding what used to be the nuclear family. Why do we try so hard, then, to be normal?
‘Normal’ is a house with a two-car garage and a pool. It is marriage and 2.5 kids and a dog. It is certainly not arthritis, not steroids, not weekly injections to alter my DNA.
The only normal thing about me is that I have all the parts, all the building blocks that make up a woman. Why do I try and want so hard to fit in when I was born to stand out?
Because ‘normal’ – as hard as it might be to achieve – has got to be easier than this… right?