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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.

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Before I was in a wheelchair and now a walker, my illness was pretty invisible.  Though there are many downsides to invisible illness, one thing I did appreciate was that it gave me a choice of how much I wanted to share if anything about my illness.  If I wanted, I could mostly hide my symptoms, and no one had to know.  But my wheelchair became a physical sign of my illness and suddenly everyone, everywhere I went, instantly knew something was wrong.  And the big question that lingered in the air was “WHAT?”

I have always been a very open person.  Though like everyone I want to be accepted, I really don’t fear rejection.  Or at least I’d rather be rejected up front by someone I just met than a close friend far down the line.  So my policy about my illness has always been to share as much as the person I’m talking to in curious to know.  And the interesting thing has been that this has brought many blessings in itself.  When I share about my illness honestly and openly, I generally find that people respond with genuine empathy.

Sharing so openly has also given me the opportunity to help many people.  There are so many people out there going through similar experiences to me themselves or have a loved one or friend who is going through something similar.  I find that when I follow my intuition and share I find I’m speaking to someone who can benefit from what I have to say.

People are usually dying to ask me why I’m in a wheelchair or using a walker, but are afraid of being rude.  So I’ll steer the conversation that direction and put them out of their misery.  In this fashion, I often find myself sharing about my various illnesses with people I just met.  Sometimes I share the story of my physical illness and sometimes I share my struggle with mental illness.

Sometimes sharing doesn’t go very well.  Though most people are supportive and understanding, there will always be the ones who are judgmental or want to tell me what to do.  Either way I never regret sharing about my illnesses.

I find it’s important though that when I talk about myself, my illnesses aren’t the only thing I share about.  I am not my illness, and if I can communicate one thing that sticks with the person I am talking to I hope it is that people like me with chronic illness are so much more than the sum of their diagnoses.  I am also a women with hopes and dreams, talents and aspirations, fears and weaknesses.  I am human just like everyone else.  I am a graphic designer and a game designer and a novelist and a blogger and a scrapbooker.

I hope I never lose my desire to share fully and genuinely, and that I never forget to share the most important thing of all – what makes me who I am.

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When I was 16 years old, during my senior year of high school, I was immersed in a deep and serious clinic depression.  My Obsessive Compulsive Disorder had just been diagnosed but was not yet under control.  I had constant intrusive thoughts of hurting myself – of ending my life.

Looking back I really had amazing self control on the whole.  But I could only handle so much.  The second time I caved in to the constant bombardment of intrusive images of self-harm, and I ended up cutting myself using razor blades my parents had forgotten to hide out in the garage.

Afterward I was on the phone with my therapist at the time.  She was telling me I was at a crossroads… that if I chose to continue down this path of cutting I would probably end up in a hospital.  I wasn’t really listening to what she was saying.  Instead, I was transfixed by what was sitting on the desk in front of me – the candlelighting piece my mom had made for my younger sister’s Bat Mitzvah.  She had glued this tiny shells all over the outside of it go with my sister’s tropical theme.  And it struck me then with incredible intensity how very beautiful those tiny shells were – how simply amazing it was that something SO tiny could be SO beautiful.  And if something that tiny in life could be that beautiful… well all of life was beautiful and precious as well.

I rushed to get off the phone with my therapist.  I knew that I had to find a way to hang onto this feeling.  I had stumbled upon my internal box of hope!  But I knew that it wouldn’t be easy to tap into again.  I had to find a way to make it physical while it was fresh in my mind.  I had to find a way to remind myself of this epiphany every day because I knew there would be many dark days ahead where I would desperately need to draw on my box of hope.

So I had my mom (who is good at crafty things) help me cover an old shoe box with some bright pretty wrapping paper.  I wanted my box of hope to be private and inconspicuous on the outside.  I didn’t tell her what it was for, but perhaps sensing my urgency she kindly helped me anyway.  Then I took the box upstairs to my room and set to work.

I put a picture of myself as a child to remind myself of happy memories of my childhood innocence.  I was obsessed with The X-Files and desperately wanted to know how it would all end, so I put a picture of that as well.

Most importantly I wrote in large purple letters:

I CHOOSE TO CONTINUE LIVING

I WILL GET THROUGH THIS

Then it was time to fill the box.  Inside I placed a smiling drama mask to remind me of my love of theater and the creative arts since creativity had always sustained me during dark times and given me something to look forward to.

Next went the rug I wove myself while learning about Native Americans in elementary school.  I had always hated looking at it when I was younger because I hadn’t done it perfectly like my best friend Jennifer.  But over time I came to love it for it’s imperfections.  In the box, it reminded me that imperfection could be beautiful too!

I put in a bracelet I made when I was 11.  All the beads were pretty by themselves but together well… it reminds me that you can have too much of a good thing.  But also to have fun and to have a sense of humor in all things.

Second to last I put in a rope I tediously made myself during Outdoor Education in 5th grade.  I spent over an hour with my hands going numb in an icy cold river laboriously pounding all the moisture out of a reed before braiding it into a rope.  It reminds me of the power of hard work.  And the rope itself, which could hold my whole body weight, reminds me to always be strong.

Finally I included a letter that saved my life one day.  I was home alone after school and feeling very suicidal.  I was searching for a knife to cut myself with.  Suddenly, I had a prompting to go check the mail before I got any further.  I almost never received any mail, but on that very day the following letter was there for me.

I cried when I read the letter.  It quite possibly saved my life that day.  I stopped looking for a knife and starting trying to figure out who could have sent it.  I didn’t think about hurting myself at all for the rest of that day.  The letter reminds me that I am loved even when I don’t realize it or it doesn’t feel that way, and that God is there working miracles in my life.

Now it mostly sits in my closet, but I always know it is there if I need it.  But today I was talking with a friend who is going through a very dark time in her life, and I told her about it.  I offered to send her photos of it, but, I thought, why not go a step farther and share it here?  Perhaps there is someone else who needed a little box of hope today.

Has anyone else made a box of hope or something similar?  Please share and post about it in the comments!

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Arise, walk through the land in the length of it and in the breadth of it; for I will give it unto thee.
Genesis 13:17

He answered them, He that made me whole, the same said unto me, Take up thy bed, and walk.
Then asked they him, What man is that which said unto thee, Take up thy bed, and walk?
And he that was healed wist not who it was: for Jesus had conveyed himself away, a multitude being in that place.
John 5:11-13 (King James Version)

Sunday was a small miracle in the grand scheme of things but not so small to me and a miracle none the less. It was a day that I thought would never happen on many levels. One thing that I thought would never happen was get Baptized, but Sunday was my Baptism. Another thing I thought would never happen was walk at my Baptism, and yet I have gone from not walking from for over a year to no longer using my wheelchair at all in the last three weeks.

I’ve been hesitant to talk about my faith here as its a touchy and divisive subject for some, but I figure this is my blog and my faith has become a major part of my life. I share every other aspect of my life here. I would be remiss if I left something so close to my heart out.

But my faith wasn’t always so important to me. I was raised Reform Jewish, and though I was Bat Mitzvahed, Confirmed, and even assistant taught Religious School at my Temple, I never felt connected spiritually to that faith. So in my more recent adult years I’ve been searching for a faith that helped me feel close to God. For a while For a while I was going to the Universalist Unitarian Church in my area, and though I liked the people and the services very much I still didn’t feel that closeness to God that I so desperately needed.

So when Melissa invited me to join her for services at her at our local Church of Jesus Christ of Latter Day Saints, I thought it was a long shot but worth at least checking out.  I had already learned a lot about being Mormon from her during the time she’s worked for me, and she had suggested I could get a blessing for my health when I went to church with her.

I was totally unprepared for what I experienced; I felt God for the first time in a very tangible way.  I knew right in that moment that my search had come to an end.  That I had found what I had been searching for.  I decided to start investigating the church and taking my Missionary Discussions that I would need in order to covert.  My blessing also said that through faith I could be healed.  It has been amazing how true that has been.

Over the following week I started feeling better than I had in a long time.  I decided to capitalize on the opportunity and try walking again for the first time in over a year.  I started with just a few steps.  I expected for the recovery process to be slow going.  I expected that it would take months to build up enough strength to walk more than a few steps at a time after over a year of being in a wheelchair or bed full time.  But I have been praying every night and the improvements to my walking have been exponential!  And in just three short weeks, I went from my first steps to ditching my wheelchair completely!

So Sunday I was Baptized, and I walked the whole day – including down the steps into the Baptismal Font and up again.  My Dad and his girlfriend Wendy were there which made my very happy.  My Mom chose not to attend which was the only sad thing.  It was one of the very best days of my life! And with it I have found such peace and happiness the likes of which I had never known.  Words cannot describe how grateful I am.  It has been such a relief and such a comfort.  I truly believe that through faith in Christ I have begun the healing process!  And I am so thankful to Him for this and for the closeness I now feel to God.  Through Him I have found what I was looking for and more than I could have ever imagined.

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I have been blessed with always having a tremendous faith in myself.  Faith that I have the ability to get through anything no matter what life rolls my way.  But oddly enough, I believe my faith in myself stemmed from my childhood traumas.  As a child I was forced into the role of the third parent in my house.  As painful as it was it gave me an inner strength — a knowledge that I was capable of getting through anything if I just believed in myself.

This inner strength and faith in myself was strengthened as I battled depression.  Living for three years with intrusive thoughts on hurting myself or ending my life and yet not acting on them, save three minor occasions, gave me the faith in myself that I could get through anything if I was determined enough.

So when my illness struck, I’ve always had the faith that I can get through this as well.  Though it isn’t always easy… in fact it hardly ever is, I have kept the faith in myself that I am a strong enough person to deal with whatever I find in front of me.  And that faith has gotten me through the endless doctors appointments and tests, the six and half years of searching for a diagnosis, the prolonged hospitalizations, adjusting to life in a wheelchair, and the daily struggle to keep a positive attitude despite my pain and other limitations.

I have also learned how important it is to keep faith that things will get better, that I will get better.  I have to have faith that I will find a treatment or even a cure that will allow me to live a more normal life again in the future.  This faith that things will be more than okay — faith that things will get better sustains me during my darkest hours.

And then there’s faith that I have in others.  I don’t keep my illness private.  Through this blog, through the people I meet and share my story with, I share my journey with the world.  And I have to have faith in people.  That they will understand.  That they will be there for me.  And though I sometimes find myself disappointed, overall I find that when I put my faith in others they rise to the occasion.  It’s as if they were waiting for me to put my faith in them.  Waiting for me to put my blind trust and confidence in them, and they respond by being there for me in more ways than I can count.  And I am so blessed and grateful for this.

Finally there is the ultimate faith.  The kind you have despite the lack of evidence or proof.  Faith in God.  Though I try to keep this blog secular, I feel I would be amiss if I didn’t share this part of my journey.  Though I was raised Reform Jewish, it never really resonated with me.  It is a beautiful religion, but through it was hadn’t found the close connection to God I’ve so desperately craved especially in the last few years as I’ve struggled with my illness.  I’ve tried out several different churches over the years.  I was going to a Universalist Unitarian church for a while, and though I loved the people and how open they were, I still didn’t find what I was looking for in terms of a close and personal relationship with God.  Finally, two Sundays ago I went to a Church of Jesus Christ of Latter Day Saints or Mormon church with a friend.  There I finally found what I had been searching for.  I have found the faith in God that I had been seeking.  I realized I had it all along.  I’ve prayed for a long time to find this closeness to God that I now finally feel, but I never expected to find it through Christ, and yet there it is.  And as surprising as it is to my friends, family, and even myself, I am getting baptized in a month.    And so I am really excited to embark on this new journey of faith.

Faith is so important no matter what form it takes.  When you are suffering physical pain all the time what else do you have to turn to but some sort of faith that things will be okay.  Whether it comes from within or from others or from God, faith is what has sustained me through my battle with chronic illness.

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Freedom is something that is often taken for granted. Freedom comes in a lot of different varieties and all are often taken lightly until you don’t have that freedom anymore.  Until I got sick I took so many very personal freedoms for granted.  I especially took for granted the freedom to move around  where I want unassisted by a wheelchair and the freedom to drive to any place I wanted.

Now that I can’t walk and I can’t drive, those are things that are no longer taken for granted.  And now I am constantly searching for ways to increase my freedoms once more.

Soon I will be getting a specially designed wheelchair that will allow me to be up out of bed in it without being in pain like I am in my current wheelchair.  However, this new wheelchair can only be transported by a wheelchair accessible vehicle, something I cannot afford.

So today my sister Danielle started what we are calling my Freedom Drive – a fundraiser to help me buy a wheelchair accessible vehicle (as well as help with my other medical expenses).

Please consider donating, and, if that isn’t an option, please share this link with as many people as you can.  Please post it to Twitter, Facebook, and MySpace,  email it to your friends and family, or even blog about it!  Thank you so much for all your help and support!!!

http://www.giveforward.org/freedomdrive/

Join the Facebook Freedom Drive Fan Page!

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