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.

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The Choice

When I was eleven my mom and I were living in New Zealand, her native country. It was definitely a lot different growing up than growing up in Hawaii, an island chain that didn’t experienced the four seasons like most. Hawaii didn’t change into shades of autumn, there were no piles of fallen leaves in gold, auburn, and burnt orange. The worst winter I experienced was just hard rain that brought on humidity that only those living in the tropics would understand.

When we moved to New Zealand following her finalized divorce to my dad, my mom cautioned it would be colder, but it never felt that cold to me. I bundled up in sweaters for winter, and donned a rain coat in spring, but that was more for comfort than anything. I didn’t realize the temp change until dipping in the ocean for the first time. The South Pacific Ocean was much colder than the tropical climates I was used to. I could never get used to the icy feeling. Those who lived in New Zealand were of course used to it, stating that in the summer it was warm. But their idea of warm was my idea of Hawaii on its coldest winter day, when most wouldn’t jump in.

However, I was a born water baby. I have many photos of me as a small child, and I’m always playing next to a body of water. The Scorpio in me could never get enough, I was a water sign through and through. As soon as I was old enough my mom put me in swim school and I took to it like a fish. I won swim meets left and right, and excelled at anything water related.

So, when I was eleven we visited a famous Auckland region beach called Piha, located on the west coast. Piha was known for its good surfing, even boasting a surf club. It was a black sand beach as well, which I’d only ever experienced one other time before, and loved the novelty of it. Piha was also known for its strong currents and rip tides. So well known in fact that there were safety zones in which you could only swim between two marked flags, and lifeguards on duty to rein in swimmers or surfers who’d been dragged out by the fierce pull of the ocean.

On that fateful day back when I was eleven, we had been driving around with my moms boyfriend at the time and I had brought a friend along with me.

Rae was a schoolmate whom was certainly not my favorite friend, but was the one available to hang out that day. While we got along just fine, I had always sensed a bit of resentment from her (yes even at 12 I could see it). She was an only child as well, from a single parent household, but was raised by a father and not a mother. I often wondered if she envied my close relationship with my mother, and had noticed quite a bit of competitiveness.

We weren’t beach ready, and lacked swimwear, but we did have a couple towels on hand and Rae and I begged to go for a dip. Looking back now, the t-shirt and shorts combination I was wearing was definitely not the best swimwear for a beach like that. However I was eager to be in water again, and despite the chilling cold of the icy South Pacific, I jumped right in.

That day I learned a valuable lesson that has stayed with me for a long time. Rae and I unfortunately got caught in the rip tide that day, and we were pulled quite far out. We knew we were in trouble but started to make the slow and steady swim back in. After what seemed like forever, a lifeguard boat came out looking for people in distress. Rae was closer and I shouted at her to get his attention. Luckily he saw her straight away and picked her up. I waved at her to have him pick me up too, but she did something that has stayed with me for these twenty five years. She looked right at me and then turned her head, and motioned she wanted to go back in, knowing that I needed help but denying it to me. In that moment she couldn’t look past her resentment or whatever she felt deep in her soul, and made the choice to leave me in the sea.

I understand that at eleven perhaps she didn’t know what she was choosing, that she might not have had the capacity to realize my life was in her hands. Though I certainly had the capacity to know and realize if I wanted saving I would have to do it myself.

I don’t know how long it took me, but I slowly and methodically swam in. My water laden shorts and shirt did nothing to help my struggle, and I’d never realized until that moment how very streamlined my swim team uniform was. I thanked the universe that I was a swimmer and that perhaps I’d always trained for this moment, when my skill would be needed most. I finally made it back in and back to my mom, her parter, and Rae. I glared at Rae but said nothing to her, it wasn’t necessary, we both knew what she did. And after that day I didn’t spend any more time with her outside of school. I knew a bad apple when I saw one.

I have thought of that day many times. I’ve mulled it over in my head, picked it apart, tried to understand how and why. But the conclusion I’ve always come to is that we just can’t know what’s in the heads of others. We can’t know their demons, as much as they can’t know ours. Did she want me to drown? Probably not. Did she want me to suffer? Maybe. It’s not worth thinking about too hard.

Last week, I returned to Piha Beach for the first time since I was eleven. Twenty five years of fearing those strong currents, and in a way fearing the death that I could have met had I not been strong enough. I sat and let my feet squish in the black sand, watching the distant waves before me. It was then that everything started to make sense. I had an epiphany.

About a week ago I saw a post I liked on a chronic pain page that I follow on Facebook. It said..

“I often ask myself, why me? Why must everyday be a pain day? But then I ask myself – why not me. I would not wish this on anyone else and perhaps the universe gave me this because I can handle it better.”

Now when I first saw that I scoffed at it. I mean the universe sucks in picking people if that’s the case. I’d prefer a different present thank you very much.

But when I was at the beach, I started to think about it. And then I got back in the water after having being scared of its currents for almost three decades. The currents were really strong and I had to fight to keep between the swimming flags. There were moments where I wondered if I should pick my feet up and see how far it swept me away. It was then that the universe reached down and gave me a revelation that has taken my lifetime to conceive.

On that day, when I was eleven, I could have certainly drowned if I gave up. I was tired, my legs and arms ached at the weight of the water against me. I could have let go and let the sea swallow me. But I didn’t, because I knew I could make it. I knew it would hurt and it would be exhausting, but that I’d make it if I wanted to live.

Since I got sick, and then sicker, and then sicker, I have cursed the world for giving me this when there are healthy serial killers that walk the streets. Cursed the universe for giving me this pain and heartache when there are billions that live without it. But just like that moment in the ocean all those years ago, I was given a choice. There have been so many times that my disease has almost won. I’ve been hospitalized, been in cardiac arrest, I’ve blacked out because the pain almost consumed me. But I’ve always chosen to wake and deal with it. There have been times where I know my body would have given up if I let it. A moment in a hospital bed after I blacked out from arrest, a moment where I saw dark and light and knew I could choose a different path.

I chose to live. And sure, I don’t want to be sick. I hate my disease and the fact that I never get well despite the handfuls of pills they make me take, and the chemicals they pump into my IV. But I’m still alive, and I wouldn’t wish this on anyone, even that girl so long ago that turned her back on me. Maybe the universe did give this to me because it knew I could handle it. That I wouldn’t let it defeat me. Maybe that’s what it means to be alive. Having something to fight for, living for more than just the 9 to 5, and the mortgage payments, and the white picket fence. Sure, a lot of people have it better than me, physically, mentally, and financially. But maybe I’m different because I’ve looked into the darkness and turned away.

I’m alive not because my heart still pumps. I’m alive because I choose to be. I’m severely ill, dying slowly from incurable diseases. But I feel more alive because I know how fragile I am. I’ve looked into the darkness a few times now, and I’ve said no to its painless quiet. I’d rather live with this than not at all.

Now Piha Beach can be a memory of the first time I chose to be stronger than you could ever imagine. And choosing is beautiful.

Mother’s Day for the childless

Today is Mother’s Day.

This morning, as I have done every single other Mother’s Day since I was old enough to understand, I contacted my mom and wished her a very special day. Then I called my step-mom nd wished her a happy day. And finally wrote a post on my social media pages to all the fabulous moms I know, wishing them a Happy Mother’s Day.

And then I sat back against my pillows in bed, and cried. I’d barely put my phone down on the bed before the tears spilled over my lower lids, streaming down my cheeks.
I should be used to this. It’s the second year in a row now that I’ve had to deal with the inconvenient truth of my predicament. It’s not like Mother’s Day is the only day I think about the fact that I can never have children. I think about it all the time.

I think about it whenever I see kids with their moms, especially when it’s little brunette girls that remind me of myself. I think about it when I hear a baby cry. I think about it when I see children’s clothing in department stores, and advertisements on tv for toys. A day does not go by that I do not think about the fact that I can never give birth myself.

Unfortunately, the nature of my disease and it’s severity makes it extremely hard for me to healthily have a child. Can I technically give birth? Yes. Should I? No, I really shouldn’t. Could it harm or kill me? Very much so, yes.

See, the issue is the chronic pain. I could have a child normally, through childbirth, but only if I go completely off my pain medications. Also my Osteoporosis medication, and depending on what I’m on for my Rheumatoid Disease, perhaps that as well. If I have no drugs in my body, then of course I could technically have a regular pregnancy. Technically, being the key word. See, if I go off all my medications then I would be bed ridden, unable to move at all due to excruciating pain that never ever ends. I would be subject to many illnesses because my immune system would crash, and because of the immobility I wouldn’t be able to exercise at all. So really a “healthy pregnancy” would not be on the table.

I’ve read that for some people with my disease, or ones like it, have had regular pregnancies and or childbirth because their diseases went “dormant” for 9 months. But since this hasn’t been medically proven, and has only happened to a small minority of patients, I wouldn’t put my body in jeopardy like that on the hopes that I get “lucky”. I’m never the lucky one. In fact, most of the time I’m the anomaly that gets all the weird and rare side effects. The point is, I wouldn’t put my body, or child, in jeopardy like that.

I met a girl a few years ago that had a child, whilst having a pretty aggressive strain of Lupus, another autoimmune disease that affects the whole body. She was lucky throughout her pregnancy, being one of that minority grouping whose disease went dormant for the duration. But her child was born with scales. No, not the fishy kind you’re probably thinking of, but more of a horrible skin condition. The baby was covered with patchy, flaky skin, that was red and rash-like, covering her whole body. Luckily, it wasn’t a fatal condition, but the baby had to be kept in an incubator for months, enduring multiple daily tests and treatments. The baby was able to go home after four months, and luckily there wasn’t too much scarring, but… to put your child through that.. I mean I know doctor’s must have warned her about complications of pregnancy due to the nature of her disease.

I guess it’s all about personal choice. But for me, even if I was willing to endure unending excruciating pain, and had the reassurance that said pain wouldn’t kill me, I would still not risk the health and life of my potential child. That’s my choice, my right. It sucks, but it is what it is.

Now, yes technically if I really wanted to be a mother there are other options available to me. I could adopt, though it’s doubtful with the severity of my disease that they would choose me as a capable parent. I certainly couldn’t raise a child on my own, so I would need to be married, and have a support system. Surrogacy is also an option, but I think it would be really difficult for me to watch someone go through the pregnancy of my child. And there’s still the issue of needing a husband for love, support, and of course, sperm.

Plus my clock is ticking down. No, not that one. Not the baby clock. That one has been ticking on and off since I turned 25. And two years ago I even went to a fertility specialist to see what my options were regarding my disease and age. I know my options, very limited as they are. I mean my life clock.  A couple of months ago I went through a patch of heavy depression. I was hung up on the thought of how much longer I had. My disease, being so severe and chronic, was starting to worry me in the sense of time I had left. And so, despite the strong objections of one of my doctors, I set out to figure out an estimate of my time left on earth. Through research, my medical records, and the testimony of a very reluctant doctor, I was given an unofficial “estimate”.

I had a nervous breakdown and sobbed for a week.

Well, having a child of my own was now definitely off the table.

I would have to be accepting of my adorable kitties being my babes. Not hard, since I love them as much as I love my human family. And in a sense, I really am a true mother to them. I feed them, clean them (or rather their bathroom), play with them, nurture them, and give them unending love. I’d starve before I let them go hungry. I put them first whenever making decisions about going out of town or staying with my mom. They really are my children. My furry feline children.

Although, they can’t really understand what I’m saying most of the time… And my Mother’s Day present this morning was a pool of vomit next to the stove. Thanks, Aureus, you’re a gem. But gosh do they give great cuddles when I’m sore or sad. Cats are empathic, and give love and comfort when they feel it’s necessary. Which for me is kind of on a daily basis. So they are great for me. And regarding Mother’s Day… well, I just have to keep my chin up and remember that while I may never a be a mom to a child, I am a mom to Astrid and Aureus.

Also, I am blessed with having the unending love and support of my own mom. A woman who gives her love openly and freely. It’s never a strings attached situation. I don’t ever have to “owe” her anything, and she has never once told me that her love and kindness must be “earned”. She never makes me feel bad about myself, or treats me with disdain. She is a wonderful mom. She is what moms should aspire to be. I love her. She is a great mom and a wonderful grandma to her grandkitties.

Happy Mother’s Day to mothers of all caliber.

 

 

 

Thank you to all those who read my blog and support me in my journey. Please visit my webpage to lend more support, http://www.gofundme.com/sixthousandsteps

 

 

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