Single Awareness Day (also known as Valentine’s Day) is upon us!  Relationships (or the lack there of) are on the mind.  Relationships are hard.  Romantic relationships are harder.  Even for healthy people.  Having a chronic illness makes it that much more complicated.  It’s hard not to feel undesirable… broken.  I know the “right guy” will love me anyway.  I know the “right guy” won’t care that I’m 150 pounds overweight from being on Prednisone.  I know the “right guy” won’t mind carting my wheelchair or walker around on dates.  I know the “right guy” will love me for the walking pharmacy, allergy ridden, health disaster that I am.  And I have faith that the “right guy” is out there somewhere.  But until then I’ve written this song in honor of today…

Other Girls
by Lauren Soffer

Maybe now I’m just jaded
Maybe my hope has just faded
So I just swallow my pride
Always a bridesmaid never a bride
Never get roses never get pearls
Love songs are for other girls

No one to hold my hand
No matching footprints in the sand
No dinners in candlelight
No little love notes to write
Never get roses never get pearls
Love songs are for other girls

No chocolate candy hearts
No Romeo to play the part
No one to give me a good night kiss
No one to love and cherish hold and miss
Never get roses never get pearls
Love songs are for other girls

But don’t you get me wrong
Trade anything to sing a different song

Maybe now I’m just jaded
Maybe my hope has just faded
So I just swallow my pride
Always a bridesmaid never a bride
Never get roses never get pearls
Love songs are for other girls

Never get roses never get pearls
Love songs are for other girls

Sometimes I forget that learning to live with a chronic illness is an endless grieving process.  I tend to get very caught up in maintaining a positive attitude, and fail to let myself feel the negative feelings that naturally come with all the change and loss I’ve experienced while dealing with a chronic illness.

This past year has been a difficult one for me.  There have been lots of changes and losses.  I endured two long hospitalizations – one for six weeks and one for eight weeks with one week intubated in the ICU.  I’ve been through multiple changes in caregivers.  I’ve been dealing with my parent’s separation and impending divorce.  I even made a major positive life change when I converted from being Jewish to the Church of Jesus Christ of Latter Day Saints,  and though this has brought me so much happiness, it has wrought some negative side effects – significantly straining some relationships with family and friends.

Through all this I think I’ve maintained a remarkably positive attitude.  I’ve become an expert at coping.  I’ve channeled my energy into other things I still can do like scrapbooking, Alternate Reality Game design, web and graphic design, and novel writing.  This has helped me keep my spirits up as I’ve created an identity for myself beyond being a “sick girl”.

This is all well and good.  In fact it’s great!  I love being happy.  I have no desire to wallow in self pity.  But that doesn’t mean that the negative feelings go away.  But where do they go?

I’ve come to realize recently that I’ve been stuffing them away.  I still feel deep sadness, mourning, and loss.  I still have intense fear for my immediate safety and my future.  But I keep that all hidden deep beneath my ever positive outlook.  Why?  Because feeling them hurts and I’m afraid of what they’ll do to me and my relationships if I let myself feel them.

Still they come out in other ways.  I eat too much and don’t sleep enough.  My obsessive compulsive disorder flares up.

So I recently came to the conclusion that I needed a safe place to let myself feel all these negative emotions once and a while.  I decided it was time to see a psychologist – one that specializes in disability and chronic health problems.

I’ve only had one session so far, but that one session made me realize just how much I’ve bottled it all up and just how much I need to let it all out.  Because living with a chronic illness is an endless grieving process, and sometimes it’s important to let myself feel the full impact of that.

Things have been emotionally rough and raw lately.  Lot’s of things are in transition.  Relationships in flux.  And I’m still stuck in the hospital (33 consecutive days and 39 total days in the hospital by my count).  I’m trying to think of it as being 39 days closer to being released from the hospital.  It doesn’t work that well though.  But cheery flowers like these ones I got from my Great Aunt and Cousins brightened my room and my mood.

Tests a trickling in and no definitive diagnosis concerning the cause of my brain stem inflammation is yet emerging.

So I was especially pleasantly surprised to receive this cuddly visitor today.  It was just what the doctor ordered.

In the midst of confusion, I often turn to poetry to help capture my thoughts.  I wrote this one in about ten minutes, and I rather like it.  An emotional moment forever frozen like a bug trapped in amber.

A Place For Him

by Lauren Soffer

Life can be wild
Wonder is lost on this child
So she goes it alone
As she makes her way home

But the time she tripped
And she didn’t fall
A silent scream
Yet He heard the call
Still She goes it alone
As she makes her way home

Not ready
Not ready to let go
Not ready
For a hand to hold
Cause even crying all alone
At least she knows
It’s all she knows

Life can be wild
Wonder is lost on this child
This girl must
Grow up
Not a child anymore
Stand up
Reach out a hand
Lift up
Her heart till it holds
Always
A place for Him

EDIT: Last night my friends Spencer, Kristi, and I had a blast in my hospital room writing music to my lyrics.  Here’s a REALLY rough take of it – complete with my voice still completely hoarse from an allergic reaction and nasal from having a feeding tube up my nose.  Hehe.  So forgive my lack of ability to hit any of the notes right now, but I at least wanted to give you the idea.

Relationships are complicated enough, but adding chronic illnesses into the mix increases complications exponentially.  In fact, being bitten by the love bug leads to all sorts of symptoms, side effects, and potential complications.

It’s been a long time since I’ve let myself like a guy.  So imagine my surprise to find myself with a good old fashioned crush on someone.  But I have all the symptoms of a crush.  Fluttering in my chest.  Racing heart.  Warmth in my cheeks.  Funny feeling in the pit of my stomach when I think about if he might like me back.  But it’s also brought up a lot of confused feelings – some not so pleasant.

I feel so inadequate because of my illness.  Why would he want me when he could have countless girls who are whole and healthy?

Dating me would mean dealing with all my limitations that even I don’t want to deal with – side effects if you will.  It would begin with setting the date pending me feeling up to attending.  Not being able to keep plans because of my illness has caused problems even with my closest friends.  Breaking a date wouldn’t exactly be the way I’d want to start a new relationship, but the possibility is a reality that would come with dating me.  Then when he’d pick me up we’d have to lug my wheelchair or walker on the date.  The first thing I want to explain to him would hardly be how to assemble my wheelchair.  At dinner he’d get a full education on my eating difficulties as I filled the waiter in on my food allergies and took pills with dinner that would allow me to digest my food.  Sounds like a pretty mortifying first date in all honesty.

I worry that I wouldn’t be able to do his favorite activities with who ever I date.  I can’t even do my favorite activities anymore.  I can’t go hiking or horseback riding or play tennis.  What if physical activities are an important part if his life?  How would I ever share that with him?

And then there’s the issue of feeling inadequate due to my appearance.  I’ve put on 150 pounds from being on steroids (Prednisone) to control my autoimmune diseases.  Though I’ve now lost a small portion of it, I still feel so physically unattractive.  Not to mention the horrible acne and hair growing in strange places the same medication has also caused.  I so desperately want to be thin again and have clear skin again if only so I will be physically appealing to guys again.

Then if things do work out after the initial shock of dating someone with chronic illnesses, there’s still all the complications that can arise down the road.  What if he gets tired of dealing with the day to day struggle of my illness?  If we someday get serious and get married, the reality is that having children and even sex itself can be difficult with a chronic and painful illness.  If we did have children, would I even have the energy to raise them?

I know.  I know.  Now I’m getting way ahead of myself.  But I don’t really know what else to say.  It feels like nothing I can say will explain how horribly inadequate my illness makes me feel.  I barely have the energy to be a good friend sometimes let alone a good girlfriend.

I hope that someday I find someone who can look past my illness and see me.  But until then I can’t help wishing that the love bug didn’t even bite me in the first place.

Having a chronic illness can rob you of your independence.  Suddenly you find yourself dependent on other people to do basic things you had always taken for granted, and this changes your relationships forever.

Before I got sick I was a super independent person.  I always preferred to do things on my own and avoided asking for help even when I really needed it.  With the onset of my autoimmune diseases, especially the neurological symptoms and symptoms that limited my mobility, asking for help became an unavoidable way of life.

Now I need help with even basic things like getting dressed or washing my hair – things I have done on my own for most of my life.  Those were the hardest things to ask for and accept help with at first.  It was frustrating for me and it was frustrating for my mom who initially found herself as my only caregiver.  Suddenly she was caring for me in a way she hadn’t needed to since I was a small child.  It tested our relationship.

At the time I felt very hurt at her frustration.  I wondered why she didn’t just automatically understand how much I had to humble myself to even ask for help in the first place.  It hurt when she responded with questions about whether I really needed the help or if I was feeling as badly as I was saying.  We fought a lot at a time when I really just needed her support.  Eventually I came to understand that I was failing to communicate.  I was also blinded by my own experience.  I was so caught up in dealing with the implications of a chronic illness and how it had shaken my world that I failed to see how profoundly it was affecting her as well.

But when I started to communicate this to her – that I knew how hard this was for her too  and that I appreciated all she was giving up to take care of me and that I knew it was also hard to watch her daughter get sick – the fighting tapered off.  I also found new ways to help her in return  that I could still do – mostly various types of computer and technical help.

When my mom simply couldn’t do it alone anymore, my need for help blessed me with two beautiful friendships in the form of two wonderful caregivers.  Sarina, my first caregiver, is more than a friend to me.  Born exactly one year apart, we say we are twins separated by a year at birth.  But it was odd at first having someone – a stranger – my age helping me with the very personal things I needed help with especially since I had been abandoned by several of my closest friends over the prior year.  They simply didn’t want deal with my new found illness and subsequent dependency.  Some stopped being my friend because they didn’t even believe I was actually sick and some of them just found it too much to handle and some I will never know their reasons.  In any case it hurt.  A lot.  But Sarina came in and loved me and accepted me and my illness.  She was truly a blessing and still is.

After Sarina moved away to further her career and get married, Melissa, my current caregiver, came into my life.  She is an angel in my life.  She, like Sarina, is always there for me.  We laugh a lot.  And through both of them I found that though I was sick I could still be a good friend in return.  I could still listen and be there for people.  I didn’t just need help from them, I could give it in return.

But at the end of the day I am still dependent on other people.  And I still hate that.  I don’t think I’ll ever not hate watching my mom or Melissa assemble my back backbreakingly heavy wheelchair.  I hate that I can’t just do it myself.  Though in a lot of ways, my relationships have grown and been strengthened by my need for help, and for that I am grateful, I am still eager to find ways to lessen my dependency.

So I am VERY pleased to announce that I’ve taken a step in the right direction – nine of them.  Last week  I walked (with the help of my walker) nine steps.  It was the first time I’ve walked in over a year!  I was having a low pain day and just went for it.  It was incredibly painful but even more incredibly worth it!

This post is my entry in February’s Health Activist Blog Carnival. If you’re interested in participating too, you can read all about it HERE.