I No Longer Believe In What I Want

I want a family more than anything.

People or even one person who’s literally or even figuratively by my side forever, supporting me and what I pursue, loving me no matter how I change throughout my life.  Not trying to control or alter that growth, but watching me choose, and coming along wherever those choices take me.  There during the hard times, to remind me of how far I’ve come; and they know it too, because they’ve seen it with their own eyes…..

I no longer believe this is possible for me.

There absolutely are people whom I love that love me too, and because of what they have done, whether it was sending me a Facebook message or taking me in: I wouldn’t be here without them.

I am not writing this to discredit anything that others have done for me — in fact, those that have helped are all the more incredible, as their acts of love weren’t due to familial obligation — I just need to change my mindset; what it is that I wish for.

For a long time, I was hoping someone would make me a part of their family.  When I moved out here, I thought that was the case, that I was being taken in by a family, who had referred to me as their fourth daughter.  They would let their children stay with them as long as they needed, continuing to love them even after they moved out. I assumed that the same offer was being extended to me.  It wasn’t; I was asked to leave, and haven’t heard from them since.

I can’t be upset, because taking me in at all was kind.  In that time, I was able to find my footing in a new city, I was well fed, and it was a brief period where I wasn’t alone.  I am grateful.

My mistake was in assuming.  Assuming how long I could stay, and that calling me their forth daughter meant their love would last.  I assumed I had found my family.  And it was that assumption that made it hurt.

I made the mistake, once again, of thinking a family had decided to keep me.   I need to let that go.  I can still be grateful for any piece of love, without hoping it’ll come again.

It’s not like anyone promised to love me forever.

Well.

A few did.  Three promised they were my family.  To be here for the ride, never letting go.

This year they all let go.  And they were joined by others; I’ve lost about a person a week since I was in the hospital. And I can’t feel betrayed, as they were kind enough to shared their love with me at one point.

Still I was crushed.  I still am. 

And in order to prevent hurting again as much as I have this year, I have to stop trying to fit into people’s families, or taking people in as my own.  I can still love and be loved, but I can’t rely on that love always being here.

So no more wishing for a family, or a guardian angel to come along and magically make my life easier.  I’ve been on my own for six years now; and I need to accept that it isn’t going to change.  Just like my Crohn’s Disease isn’t going to go away, my familial circumstances aren’t either.  I have to accept that this battle is mine to fight alone, and if I fail, it’s only on me to fix it.

In some ways this will make me appreciate love even more. When I stumble upon help or love I’ll be endlessly grateful; but I won’t be shocked when that love moves on.  I won’t feel as crushed as I was when I lost my family.

Fortunately, it’ll be a long time before I see someone that way again.

You Call Me Sick

You think I'm sick?  You know what I am. I'm sick of this year. 

Of losing best friend after friend after friend. 

I complained that I wanted a hand to hold when I weep. 

Now I wish just for someone that I can text.

Everyone that got close to me is gone. 

The love I had for them is calcifying inside of me like; making my heart hard and cold. 

I just wanted to love unconditionally. I don't know how to get over losing so many people in so short a time. 

And the stragglers that are left, I fear infecting.  

Perhaps I am my disease. Not Crohn's or arthritis or asthma or hypoglycemia. 

It's me. 

I am the disturbing one petrifying those who come near.  A Medusa who just wants a hold someone; now too afraid to love anyone new or to chase after the loves I still need. 

It feels like drowning. 

Today once again the cycle began. 

Someone figuratively slapped my wrist for sitting when I needed to. 

Silly me. My brain clearly only functions at standing night.  And because I responded "well I need to do this," HR is now involved. 

They say they're here to help but with the Olympic hurtle track they put between me and working without feeling like an outsider, it feels more like they're trying to discourage me from trying at all. Unless I can get a gold metal in humiliation and tenacity, while not getting paid and eating instant potatoes as my only meal --only then am I allowed to do what my body needs without having to feel fear or shame. 

And the battle never ends. I thought I won this twice before but here they are again, setting he hurtles in front of me. Again the healthy ones with their misplaced concern decide for me that I am sick.

They want me at 100% and ignore my whispers that I never am. Ignore me pleas that I need this to survive. Ignore my tears, my feelings, and my pain: because their voice is louder than mine. 

They don't understand yet they decide what I can't do. I can't sit and still do my job, they say (ignoring the fact that sitting hasn't impaired me from shining at what I do). No, I can't sit.  But if I hurtle my way to the paperwork at the end of the course, suddenly it isn't an issue!  So sitting without a piece of paper: Too sick to function!  Sitting with a piece of paper: Call me Heather Normalton.

It's a flawed system and I'm sick of it.  If I need to sit and it isn't causing problems, let me be. Don't pretend you understand how difficult my life is. Don't even try. Those who do become petrified or flee.

It's a lonely existence. 

And you're right that I'm sick: sick of everything being this hard. 

Post-Mortem on West Coast Me

          I have had a pretty rough year.  I moved out here under the pretext that I was paving the way for my love and I to live together in a city we had dreamed of for two years.  I want to work in TV/Film and he could do anything out here, acting, programming, urban farming, literally anything, but he just wasn’t ready to leave yet.  So I moved out first and stayed with one of my best friends.  I knew her and her family for over a decade and was so thrilled for the opportunity to save some money as I lived with people that I loved.  

Within the span of a month, however, my once-love said that there was a possibility that he would never move (something that absolutely would have kept me from leaving had I known this before I was already here) and my friend’s family said that they needed my room back and that I had a month to find a new place.

          So I found a place quickly.  It was far from work, however; one day I left three hours before my shift and was still late.  So obviously I needed a different space.  I applied for a room somewhere, almost lived in that landlord’s guest house, and then there was another space that was available in the original building.  It was her old office and I loved it.  It had a loft for the bed, a little patio, and more space than I’ve ever had.  It had a shared bathroom down the hall, but honestly I’d rather share a bathroom than a kitchen, so I was happy.  I also knew that my love would like it, if he moved out here.  He always loves little balconies and there was definitely enough space for both of us.  It was terrifyingly more than I had paid for rent in my entire life, though, even though it was considered cheap for this city.  So I knew that every financial woe I’d associate with him, for making me believe that he was going to come here as my partner, and instead he abandoned me to figure it out on my own.  I realized he wasn’t a part of my life out here, and wasn’t try to be, so I called something that was already done.  Plus without the pressure of him coming here to be with me and to help me, perhaps I wouldn’t resent him for how much I was going to struggle.

          And things were okay for a little while.  It was hard being on my own after a few years of living with a love and before that being surrounded in school by people who knew you and could see you change.  That’s one of the best things about friends; they remind you of when you grow.  And yes, I made a few friends out here.  I pushed myself to go out more than I usually would and with the safe umbrella of my coworkers, I felt confident in my West Coast body.

Things were getting harder, though, and I was losing weight from not eating enough as I couldn’t afford much food after paying rent.  I don’t know how much that ended up attributing to my health, but about two or three months later I was in the hospital.  You know that story though; I was in for 8 days, out for 6, back in for 10, and when I got home I saw that my landlord wanted the space back as her office.  I had signed a year lease, but she never gave me an original copy and when I requested it at this point, the contract now said that it was a month-to-month lease.  She also had a commercial license for the building, not a housing one, so I didn’t have any renter’s rights, and so I had to move.

          Also, at this point, I had lost about half the friends that I made out here and half of the ones that were leftover from high school.  And it makes sense; my life is anything but easy.  Some did it tastefully, some in a way that hurt so much it’ll be hard to ever forgive.  Basically I was in this space of feeling alone and like a burden to everyone I loved, fearing constantly losing those that were still by my side.  It made me afraid to reach out to anyone but I still so desperately needed help.  There were many nights that I wept alone, simply wishing for someone to hold my hand.

It was moments like this that made me really miss my love and my makeshift home out there.  I had more people in Philly telling me that they wished I were closer so they could help, than I had friends left in this city.  And I became nostalgic.  It could be a “grass is always greener” mentality, but I longed for the happiness that I had there.  I tried to get back together with my once-love, too, offering anything: to leave the West Coast, to move wherever he goes, to start over somewhere new, to wait for him until he was ready, even to pay for a plane ticket for him to see if he could be happy out here; because I realized that more than a career in TV/Film, I want to have a life with people that I love.  And in the last two years I have lived in four cities, and was happier in the three that I was together with him, than I have been here without him.  He declined.  It’s so hard to know exactly what I want and not be able to work for it.  Everything I’ve ever wanted I could achieve with hard work; it may not have been easy, but it was always worth the happiness that I made for myself.  And I’ve discovered a key to escape my unhappiness here and was told not to open that door.

Also around this time was when I moved in with the roommate that after one day together decided she wanted to break our lease.  That actually was to my benefit, ironically, because I didn’t want a roommate anyway (especially one that was that unaccepting) and our building manager showed me a studio in a different building that he manages and it’s exactly what I can afford and it’s all mine (and no shared bathroom this time).

          So aside from feeling like I am in a city where I’ve only felt pain and loss, I have the perfect apartment.  It’s also about the price that a studio in any city would be, so it helps me feel less like this city is taking my money and my freedom with it.  That said, I don’t know how to find my happiness now.  It’s not that I need someone else to be happy; I’m happy by myself and like myself quite a bit.  Instead, it’s that I feel a greater joy at making those that I love happy.  I’d sooner get my once-love a toy from his favorite anime, than spend that money on something for myself.  I’m not selfless, I still take care of me….there just isn’t that much that I need.  A roof over my head, food that doesn’t make my belly hurt, a blanket because I’m always cold…and that’s about it.  For instance, my little hermit crab has a mansion with three water dishes (salt, fresh and gatorade), two kinds of food, coconut substrate AND sand, mineral cubes, a climbing branch, a giant “tree” to climb on/in, a hermit hut, two sponges and three extra shells.  I also have a humidity gage and thermometer, as well as a nighttime heating lamp to make sure that my baby one has the perfect conditions for the happiest of homes; because seeing him happy makes me happier than anything else.

This is the capacity of love that I want to give.  And without my once-love, I don’t know where to begin in rekindling that extra happiness.  I think the first step is getting out of this isolation of no work and no socializing.  I need to be around people again.  That’s why I decided to go back to the East Coast for my birthday.  So many people I love are there, and it’ll give me a chance to see my former city without it being tied to my ex.  Perhaps it’s the layout of the city that I love.  Maybe I identify more with the hard working East Coast over than the lax spirit of the West.  I could miss traveling and hopping on a bus for two hours and being in a different state.  Perhaps I miss walking around for everything I need and feeling independent of rides from friends.  Maybe it’s that I felt safer there than I do here.

          One of my doctors thinks not feeling safe is a key to why I’ve been in pain.  She thinks that my brain has been mimicking the symptoms of my Crohn’s disease to warn me that I’m in danger.  Perhaps it could be that I no longer have 3,000 miles between me and the woman that abused me.  Maybe it’s that my ex always made me feel safe, and now I’m on my own.  I don’t know how to feel safe by myself.  And I don’t need anyone to help me with the battle, I just want someone to hold my hand after the fight.  (And the hardest part is I know whose hand I want to hold, and don’t really want anyone else’s.)

          So I’m really excited to see what this trip brings.  I’m hoping for clarity, less pain, lots of fun, and to get to see the people that I love so much.  I really felt like myself last year, that I was growing into the person that I want to become.  Hopefully this trip will help bring that forward motion back to a city that’s felt pretty stagnant.  Maybe even, through the eyes of my all-knowing friends, they’ll help me see that in this year, which has felt a like a waste of my time, actually helped me grow into something I can be proud of.  That’s what I hope for the most.  This city has never been very good to me, and I’ve lost so much this year; I don’t want to regret moving here.

What Questions Do You Have?

Through my decade of having an autoimmune disease, I've learned that I can empathize with a lot. There are hundreds of stories of guilt and healing, of preservation and persistence, of struggle and resolution that I could tell - so what would you like to hear?  What advice do you need?

Send me an email to heatherarubarb@gmail.com and I'll answer your questions on my blog. 

P.S. That's not my primary email, so if you would like to be virtual penpals make sure to specify that in your email.  

Forced Back on Leave; Forced to Be The-Sick-One

I am outraged and hurt and betrayed.

I have worked so hard to get better; yes worked.  I’ve been to six doctors appointments a week since I left the hospital, had procedures, memorized doctors addresses, I’ve pleaded for help from the same small group that’s probably as sick of me as I am sick, I’ve had multiple failed IVs that leave me with gross and notable bruises for months, I’m been in pain, been told that my pain isn’t real, and gone to some doctors that care more about my money than they do my treatment.  I’ve struggled on stairs, which feel like the 200th sit up that you just can’t really manage to do, each step has felt like that.  I’ve moved from one terrible living situation to another, and had some close friends blame it on me.  They used the word “disturbing.”  I’ve lost friends, people that were the closest thing I have to family, pleading with them to let me do something to keep them in my life and still lost them with the heartless phrase “I’m out.”  I’ve had people insinuate that I am the reason that I’ve lost my support group, that it’s something that I am doing wrong.  I think it’s that my life is too exhausting for others to keep up with.  But perhaps I am that “disturbing” and terrible and at blame.

But I thought maybe going back to work could help.  It was at financial necessity, yes, but also I thought seeing people, new people, and old people that haven’t come to help me but possibly still care, I thought that a forced community could help me feel less alone, and less like my solitude was my fault.

And I had a glorious week of it, of a community that hugged me and welcomed me back and now have been told I have to go home.  They are forcing me to go back on leave, thinking that more time to sit alone at home reflecting on how lonely I am and how much I miss the people that I still love as my stomach growls from the lack of food that I can afford…they called this a “gift.”

I want to be back at work, and I’m forced me to stay home.  They blame it on me for saying that the restrictions they aren’t currently in place would help me.  Yes they would, but I’d take back everything that I said *in confidence* to be able to work.

They say they don’t want it to be at the cost of my health…..but stressing alone at home about how I’m going to pay rent, where I’m going to find food, how I’m going to move when I don’t have boxes or anyone to help me…that isn’t any better for my health.

 I am so alone.  I feel like a burden to anyone that lets me tell them how hard my day is….And I just wanted a chance to feel normal again.  To not desperately need company so that I won’t go insane.  I wanted to be around people and feel like there’d be someone to hold me if I cried — but I didn’t cry.  I didn’t need to cry.  I got through last week of work with grace.  I felt normal again when I was around my peers and like I could do anything….I wasn’t assigned to do anything, however, but I still felt happy to be back.  Happy to not spend the day alone. Happy to feel like there’s a reason I’m getting better and I felt like in that environment, I could grow.

And they took it away.  I said this is not what I want.  This will not help me.  This just causes me to stress which will possibly more detrimental to my health than trying to work without accommodations.  But there are ways.  There are different ways in which I could work without it hurting my body.  You could do that.  You’d do that for someone who started feeling sick while they were here… But nothing I said mattered.  The more I fought back the more I realized I didn’t have a say in the matter.

And that’s what stings is they think they’re helping me.

That forcing me to spend more time in an environment with a roommate that triggers me and decided to kick me out after a day, is beneficial to me.

They think that clearing my schedule gives me time to do what?  I’ve already booked appointments around the days they said I could work.  They put me on the schedule for the next three weeks.  I can’t believe they’re just taking it away.

They say it’s until my restrictions come through with the third party company and our company’s HR.  Buuuuut they’ve had the information since February 6th and haven’t gotten it done and now the third party company has given my case to a different sector of what they handle, who will call me eventually…..and now I don’t even have a case worker to contact to ask how long this is going to take.

My managers, who haven’t had to juggle the phone calls between all of the above, are optimistic that this will get resolved soon so I can be back at work……but I feel like I should to get another job to pay me in the meantime.  Because again, their medical leave doesn’t come with financial benefits, and I can’t just sit back with my ability to eat and have a roof over me head depending upon how quickly paperwork can get filed.

Of course that quickly found temporary job isn’t going to care at all about my health, but still…. I don’t want to be homeless.  I’m already barely eating so I can afford to pay rent…but with no income, I don’t know what else I can do.

Again.  This is not helping me.  I don’t wan’t to be in this situation, I want to be back at work.  Like I was a week ago.  I want to feel normal again.  And  I don’t think I can forgive them for taking that away from me.

tear stained glasses

Hitting the Road Again...

So I think I am cursed.

I thought the other day was a great day.  My new neighborhood is safer and because of that I can finally explore again.  There are great things in a ten minute walk in any direction.  I also love that I am basically neighbors with the studios that house my dream job; if I can see it from my window, them maybe I can actually end up there.  I’m also closer to work, my doctors, and my friends; which all equates to a healthier life.

So this was how I started my Tuesday.

And yet it ended by wondering if I am too broken of an individual to not cut everyone I touch with my jagged edges…  In under a day, my new roommate decided that I’m not worth getting to know and that she would rather break our lease than work together to create a peaceful living environment.

I hate having to acknowledge this, (as I don’t think it’s a constraint worthy of how this situation has unfolded,) but my PTSD was triggered by her that night, but like any physical injury, it just requires a little bit of time to heal.  For instance, if you twisted your ankle, you need to sit down for moment to let it rest, and then it’s better.

I just needed to sleep on it and then I knew I’d feel better the next morning.

Instead I woke up to a message that had escalated the situation beyond something that could be resolved.

I’m still trying to remedy the situation, like I have been doing constantly for the last four months….but my circumstances seem to only get more and more impossible.

And now I’m sitting here worrying that there’s something wrong with me for having yet another ailment that I didn’t choose, that’s now altering my chance at happiness.

So I am looking for another place to live, again….and in doing so I think I have burned the bridges that I have left and I don’t know where to turn for help.  I didn’t choose this.  I didn’t want this to happen.  I thought by hiding in my room I would be avoiding any chance of this happening.

I’ve lost so much since all of this started.  I’m tired of everything being this hard.  If I knew how to give up, I would.  

I’ve just faced so much physical and emotional pain.  I don’t know how to heal back into something that can be fixed.