Walk By Faith

March9

Walk by Faith and Not by Sight

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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Wheelchair Dance

January17

Tonight I wheelchair danced.

But that’s not where this story starts.

Once upon a time, I was afraid of dancing.  In fact, for most of my life I was afraid of dancing.  I never was super coordinated and I certainly lacked natural rhythm.  I was convinced I couldn’t dance and that I looked stupid trying.

Later, when I was old enough to have a few drinks first, I could get up the courage to dance a bit.  And when over a year ago now I ended up in a wheelchair, dancing seemed to be out of the cards forever.

But the world works in mysterious ways.  And someone named Jane McGonigal came into my life and with her eventually came her invention Top Secret Dance Off.  She and her games have changed my life for the better in innumerable ways and she has truly been a blessing to me, so when I heard about Top Secret Dance Off or TSDO I knew I had to be a part of it.

However, the way you participated in TSDO was by donning a disguise and submitting your video of you dancing to one of the dance challenges.  But I was in a wheelchair.  I could barely dance before.  How could I now?  But I am not so easily dissuaded from something I am determined to do.  So timid at first I made my first and then second video featuring Finger Dancing!

But then I began to joke to my fellow TSDO players that I would wow them with a wheelchair ballet.  Their response to the idea was so positive that I decided that it was something I had to do.  So I recruited my best friend and caregiver at the time Sarina (a real former ballerina) to help me.  The result wasn’t something either of us expected and the response to the video blew me away.  People laughed and cried and were moved and inspired.

For my wheelchair ballet video I won a mask.  The only condition of accepting the new mask as a reward was I had to make a video of me putting on the mask for the first time and dance whatever dance came out using a dance move known as “the solar eclipse” which I was told started in the elbows.  To this day I’m not sure what happened to me when I put on the mask, but my fear of dancing was conquered!  See for yourself…

So tonight I am unmasking myself to all of you because tonight while out to dinner and dancing with my dad and his girl friend I wheelchair danced without any mask at all and I didn’t have to think twice about it.  And although I didn’t see it myself, my dad said when I powered on my wheelchair to spin around on the dance floor, the people behind me watching applauded and cheered.

It occurs to me that the world is full of little miracles and hidden blessings like this.  Because without a wheelchair and Jane and TSDO I may have never challenged myself to get over my fear of dancing at all.

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Blogiversary: A Belated Thanksgiving

December9

When you are sick all the time you often have to (sometimes unwilling) rely on the help and support of other people.  And that is something that should not be taken for granted.  So today, on the one year anniversary of this blog, I feel like I really have to thank all of you who have joined me in my journey as a novel patient.  During the ups and downs of this last year, your comments and support have been such a source of strength for me to draw upon.  And this blog has come a long long way since my first post.  Not only has its readership grown, but its pushed me to improve as a writer.  It’s even spawned the Novel Patient Community where every novel patient can have their own blog.

Though it has been a rough year in many ways, I am thankful for so many things.  I am thankful for a mom who not only lets me, her 26 year old daughter, live with her, but helps take care of me.  I am thankful for a dad who cares so much for me that he will always try and do what he thinks is best for me.  I am grateful for a caregiver who I also consider a close friend and a also for a best friend who I know will always be there for me when I need her.  I am thankful for a wonderfully supportive sister.  I am thankful for a cuddly dog that adores me.

I am also thankful for my doctors who have often gone out of their way to make sure I get the care I need.  I know I am a very complicated case to have to deal with.  This year I decided to make the five of my doctor’s I see the most handmade holiday cards to let them know how much I appreciate what they do for me.

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A Wedge Between Us

May4

My dad and I REALLY don’t see eye to eye when it comes to my choices of treatment.  He has a very hard time accepting that as a 25 year old woman they are in fact my choices and not his.  My dad is a staunch believer in some pretty radical (and some not so radical) alternative medicine treatments.  He believes that all my doctors are wrong because they are from a western medicine perspective.  He doesn’t even believe in my diagnosis.  So he sees my choice to follow conventional treatments in effect killing myself.  His words not mine.

This makes it VERY difficult to have a relationship with him since right now my health is such a big part of my life.  And he won’t agree to disagree.  I feel at such a loss at what to do.  I don’t want to cut him out of my life, but I don’t need his constant negativity about my choices.  I’m the one who is sick.  I shouldn’t have to take care of him and his anxieties as well.  But that’s basically been my role in my family my entire life.

As much as I wish my dad will change, I don’t believe he ever will.  I don’t know what that will mean for our relationship going forward, but it makes me sad that my illness is driving another wedge between a person I love and myself.  It happened with so many friends who just didn’t want to or couldn’t or didn’t know how to deal with someone their age being chronically ill.

People have such strong and personal reactions to someone else’s chronic illness that I think they easily forget what that person is going through.  My dad is afraid of some horrible side effect occurring from a medication I’m on, but he never acknowledges MY fears.  He tells me how he is sooo worried about me every day, but what am I supposed to DO with that?  Does he really expect me to be the one to comfort HIM?!

Just because I put on a brave face and do very best to be optimistic and make a life for myself despite my illness doesn’t mean I don’t have needs too.  It doesn’t make the intense lonliness and isolation or the fears for my future or the daily physical pain of my illness any less.

Buy my dad doesn’t see it this way.  So he continues to drive the wedge in deeper.  And it hurts.

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