When I look back on the most rewarding experiences of my life, they are almost all to do with serving others.  Right now I’m working on a community service project called Scrapaganza.  Scrapaganza is a scrapbooking event at the Ronald McDonald House in Los Angeles that celebrates the beauty of every life as a source of inspiration.

Ronald McDonald House provides housing for families who have seriously ill and injured children in the hospital.  These parents and siblings are dealing with very difficult circumstances.  Scrapaganza will be a source of joy during this stressful time in their lives.

The event will be open to all families currently staying at Ronald McDonald House.  After an inspiring keynote, each family will create a beautiful scrapbook telling their personal story and celebrating joyous memories.  Expert scrapbookers will be on hand to lend support and assistance.

Scrapaganza is currently seeking volunteers and donations.  Find out how you can get involved!

Please help me spread the word by posting http://scrapaganza.org to your Facebook, Twitter, and etc!  Thanks so much for your support!

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.

The recovery process after a long hospitalization can be long, boring, and frankly difficult on so many levels.  Yes, I said after a long hospitalization.  I’m pleased to share I’ll have been home three weeks on Monday!  And while being home is an infinite improvement over being in the hospital, it raises new challenges, frustrations, and disappointments.

I’ve been very limited in what I’ve been able to do for myself due to pain and extreme fatigue and lack of endurance.  I have a long way to build back up, and I have to be patient.  But I don’t want to be patient right now.  Right now, just walking to the bathroom and back is enough to exhaust me.  But I fantasize about walking around my family’s Hanukkah party on Sunday.  If I am even up to going at all.  I didn’t make it to my family’s Thanksgiving.  Another big disappointment.

Being sick I’ve missed out on so many important events.  Holidays, birthdays, Bar and Bat Mitzvahs.  Laying in bed it’s sometimes hard not to feel like life is passing me by.    I’ve lost so much and given up so much.  A million tiny and not so tiny disappointments.  Too much to count or quantify. But each a pain that runs so deep it sometimes threatens to swallow me up.  But there’s also so many things I’ve gained.  I just hope that it balances out in the end.

This isn’t one of those happy inspiring posts I often do.  Why?  Well, right now I’m not feeling happy or inspiring.  I’m feeling depressed and frustrated with the world.  Today marks the 8th week of my stay in the hospital.  From here on out I’m setting a new record.  I am just so done with everything.  I just want this to be over.  I just want to go home.  And I’m angry and depressed about it.  I’m tired of trying to have a positive outlook.  Right now I just want to kick something.

People like to tell me that I’m an inspiration to them.  And though I really appreciate the sentiment, I’m really tired of hearing it.  I don’t feel like an inspiration.  I feel like a young woman who’s dealing with way too many health problems as best she can.  I feel like when people say that they are placing me on a pedestal that I don’t deserve.  I didn’t do anything so remarkable except what it took to survive this the best way I knew how.

It’s a lot of pressure to be an inspiration.  Being an inspiration means you are strong in the face of uncertainty.  It means you are brave and positive and happy and fearless.  Once I’m an inspiration, I’m expected to continue to be so.  It doesn’t leave room to be angry or sad or frustrated.  It doesn’t leave room to just want to give up or have a melt down about it.  It doesn’t leave room to have a pity party.  It doesn’t leave room to have a good cry about it.  It doesn’t leave room to be a scared little girl.  It doesn’t leave room to be REAL!

I am tired of being trapped on this pedestal.  On the other hand I’m happy that my story helps people.  I really am.  But not at my expense.  It’s a balancing act.  I didn’t ask for it and I don’t want it.  I just hope I can get off of it before I fall off.

This is not an easy thing for me to confess, so please be kind.

I realized that I am afraid of getting better.  Not because I am afraid of being well; I want nothing more than to be well.  I am afraid of getting better because I am afraid that I won’t.  In other words I am afraid of disappointment.  I am afraid that I won’t get better in both the long and short terms.  I am terrified in fact.

I’ve been having a rough time emotionally with the new diagnosis of Myasthenia Gravis and this prolonged hospitalization (over 4 weeks now).  It’s been a grieving process.  Lots of different emotions.  Lots of tears shed quietly making it hard to breathe the oxygen coming through my nasal cannula.

But I’ve had a breakthrough as well.  My friend Monique and I had a wonderful discussion about all this out of which I created a new way to be in this experience of being ill which is to experience it as quite the opposite.  I created the possibility of being Creatively Courageously Embracing Health.  This means that I don’t have to be afraid of not getting better because I am Creatively Courageously Embracing Health.

Creatively Courageously Embracing Health

As I continue this journey Creatively Courageously Embracing Health, I have undergone 3 treatments of plasmapheresis.  The improvements have been huge!  I can move my legs again without the help of medication (though the medication further improves my strength levels)!  I can also breath a lot better and my voice is stronger as a result.  My doctors are deciding if I’m going to have 2 more treatments or if we are just going to stick with the 3.

Then begins the long process of rehabilitation.  Being weak and/or paralyzed for so long has really set me back, since I am Creatively Courageously Embracing Health I know I will find a way to get where I am meant to be.  I will courageously push to but not past my limits to recover and then I will creatively adapt the rest of the way so I will be where I want to be in embracing my health.

I just hope you will all embrace this possibility with me!