I am whole

My mother was a child of the 50’s, and raised by her mother with certain ideals in her head. She passed most of these on to me, and I followed them with diligence, all except one. In the 50’s women were raised to look for a man to support them in life. Someone who would marry them, have children with them, and basically be their “other half”.

I could not follow in my mother footsteps here. I never thought I needed a man (or anyone) to complete me. I didn’t need to find my other half because I wasn’t a half. I was whole. I only hoped that one day I would find someone(s) who valued me for my wholeness and accepted me, including my flaws and everything that made me the whole person I was.

There have been many that have come and gone. I have also spent many years wondering if I could even hope to find someone(s) to accept parts of me, let alone the whole of me.

I’ve come to realize that we as humans seek perfection where it doesn’t exist. We look for the counterparts of ourselves even when we swear we don’t need or want them. We want our partners to be an ideal that doesn’t exist. And yet we push our way through relationships intent on getting what we want, despite our unrealistic expectations.

Perhaps in this next chapter of my life I will remember that perfection does not exist. I will remember that we can’t have our cake and eat it too. And that compromise doesn’t mean sacrificing who you are.

I will remember what I am worth. I don’t need to find my feet, because I’m already standing. I will remember that giving someone my heart doesn’t mean they will accept it, and that that’s ok. I will remember that I am beautiful. I will remember that I am strong. I will remember that I am a whole person.

Mommy, make it go away

When we were sick as children there was always that one person who could make us feel better. Or at least help us get through our qualms faster. It could have been a favorite aunt, a grandparent, or an older sibling, but for me as an only child, it was my mom. And when I was really sick (with a bad cold, or the flu, or maybe belly aches,) she became ‘Mommy’, and Mommy could do no wrong. She anticipated when I needed hot tea, another warm blanket, help to the bathroom,  or sometimes just a hug and a channel change (our first cable box in the 80s didn’t have a remote). When we were young these relatives that helped us were more like superheroes, they could do no wrong, and they cured our ailments with a well timed cup of hot chocolate.

I miss those days. The days of waking up and only needing to holler down the hallway for help, and in flies Super Mom to the rescue. But those days are long gone.
I didn’t even have to open my eyes this morning to know it was a bad day. Every inch of my body was silently screaming. The trek to the bathroom was child’s play compared to the excruciating job of getting up off the toilet once finished. My knees said no. My hands and wrists said no. My arms and shoulders, feeling like broken bones flopping around inside my skin, said no. If only Mommy had been there to help. To soothe me with soft words and French toast.

Everything  hurts. My hands are the size of baseballs, my fingers won’t bend. Crying does nothing to help soothe except bring my confused cats into the room with pleading meows to feed them more. Oh the joys of motherhood.

I want some hot tea. I want to watch Cartoon Express on USA. I want hot oatmeal and another blanket. But no one comes when I holler down these halls. The pain stays.

Gone are the days where our knights in shining armor are here to make us well. Gone are the days of walking into a kitchen to a ready made breakfast. Gone are the days that a hug makes all the difference.

Gone are the days of Mommy making it feel better. I hurt all over. And no one is here to fix me.

If you would like to help me, please visit my donation campaign at Christine Lilley’s Life Fund

My Sympathies

I tend to find that a lot of people don’t really know what to say to me concerning my disease. I know they want to be supportive or encouraging, but often it comes out misconstrued, and sometimes condescending. I get it. It’s hard talking to the sick. I never know what to say when I come across others. You want to say “Get better soon”, but in many cases that isn’t going to happen as they have long term illnesses. You want to say “You’re looking great”, but it’s hard to get out when you’re looking at the pale and sickly version of their former selves. Even “I know you’ll get through this” can come out really thin, because you really have no idea if they will, and they don’t need a reminder of that.

I think some people definitely handle it better than others. Those that have been dealing with friends or family whom are ill will obviously have a better grip on it. They will be less likely to break the record of shoving their foot far into their mouths. At the end of the day, however, I’d much more prefer an honest comment than a forced lie. If I’m having a bad pain day, and I know I don’t look well, press do not attempt to cheer me up with a “Wow, you’re looking great”. Or even worse, a “You don’t even look sick”. While I’m sure your heart is in the right place, comments like these can be really difficult to hear when we are already feeling terrible, and know we look it too.

You know that old saying “If you can’t say something nice, don’t say anything at all”? Well, in the case of being chronically ill, that phrase is reversed. Please don’t force a good word. I would prefer silence rather than an uncomfortable compliment that I don’t feel fits me or the situation. And I sympathize with you, really I do. It must be incredibly awkward and difficult to make small talk with me when I’m feeling like crap. When you have to watch me cross a room at the pace of a snail, and lowering myself into a chair so slowly that you can hear each individual joint click. Yikes. That must be a nightmare.

I feel the worst for my mom. Parents should never have to watch their kids go through extreme pain, illness. When you retire, I imagine your ideas of the next few years are filled with trips to see exciting places, hobbies and crafts, in Hawaii there’s definitely trips to the beach, and other fun sun filled activities with very little stress and hardships. Those long hard days are behind you once you retire. Right?

This morning I read a great article on Rheumatoid Arthritis.net written through the perspective of a husband whose wife has had Rheumatoid Disease since she was two. He wrote how difficult it is for him to watch friends, family, and society treat his wife like she is broken, and even worse, that her disease is an inconvenience. My sympathies go out to that man, having to deal with the hardships that his wife’s disease brings daily. But he seemed to be handling it extraordinarily well. Patience. That’s key.

My mom has a lot of that. After a full life of working grueling 9 to 5’s, two huge international moves, raising a daughter basically on her own with very little financial help, attempts to date and have relationships, while also maintaining her own individuality, she has always been one of my role models. If I can have a life half as full as hers I’d consider it a life well lived.

But then I got sick. My life derailed, and so did hers.

Her friends, family, and relationships can hide their heads in the sand as long as they please, but at the end of the day… my mom knows we are in this together. And unlike other people in my life I know that I can count on her to help me get through this. We have had some really tough times. My disease is scary. I won’t lie, there have been several occasions where she has had to watch me sob helplessly when I haven’t been able to keep it together. She has stood by me when my medications take over my body and mind, and mean and grumpy things come out of my mouth. She understands when I say I’m in pain. All I have to do is say “Mom,I’m in pain”, and instantly she understands what I need, or don’t need. She can look at me and know exactly how exhausted I am, or if I need to eat something, or if I need a hug.

My sympathies go out to her, because just like that husband, my mom goes through my disease with me. It’s not the retired life she wanted. And sure, she could walk away at any moment and decide I’m on my own, just as others in my life have. But she hasn’t, and she won’t. Because we are in this together.

Every chemotherapy treatment where I’m lying in that cold hospital bed with an IV in my arm, she’s there. In the waiting room while I give blood for the six thousandth time, she’s there. Sitting bedside while I wake from surgeries, she’s there. Handing me a glass of water while I take handfuls of pills when I visit her, she’s there. Holding my hand in the doctors office as I receive more and more bad news, she’s there. And she doesn’t put a limit on her help. She goes to every appointment and treatment with no exceptions. She doesn’t care if anyone else is there, because she’s there for me. No restraints hold back her love for me. She stands up for me no matter what. That’s real family. 

And my sympathies go out to her. Because she does whatever it takes to be with me, to help me. Because we are in this together.

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Christine Lilley’s Life Fund