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.

Even as I listen to the alarms of my own monitors, angry that things still aren’t quite as they should be, today I just feel so grateful to be alive. Life is so precious and short and wonderful. I feel so lucky to be breathing on my own again. It’s the little things you so easily take for granted.

Overall I’m feeling much much better. I am breathing all by myself after a week of needing a ventilator to breathe for me due to my autoimmune disease paralyzing my breathing muscles.  I’m now out of the ICU. YAY! My double vision is also much better and I am moving all four limbs again!

I am having some high heart rate issues today (with some chest pain and shortness of breath), and I’m possibly brewing another infection somewhere.  So I get to look forward to more tests tomorrow. Fun times!

I am still hopeful though that I’ll get out of here to some degree of soon(ish).

Thank you everyone everyone everyone who has been there for me! This has been a very very scary experience for me and my family, so whether you’ve come to see me or written me a note, signed a card or just kept me in your thoughts and prayers, it all has been so very much appreciated by all of us!!! I love you all and miss you so much!!

You have to take the good with the bad. I subscribe to this philosophy not just when it comes to my life but also when it comes to my favorite hobby – scrapbooking.

I started scrapbooking almost two years ago now. My mom had made me a beautiful scrapbook for my Bat Mitzvah when I was 13. She promised my younger sister Danielle the same thing. But life got in the way and my sister’s Bat Mitzvah scrapbook turned into a middle school graduation scrapbook then a high school graduation scrapbook and finally a college graduation scrapbook.

As Danielle’s college graduation approached my mom still hadn’t started the scrapbook. But I figured maybe I could help. After all, I was home all day with nothing to do. It might even be fun, I figured. I had no idea I would end up loving it so much, that I would find a hidden talent, and a passion… well more like an obsession.

When all was said and done, my sister’s college graduation scrapbook became a three volume set encompassing her entire life up until that point. It was time to move on to other things, so I started in on my own life.

While going through my own pictures from the last several years, there were many pertaining to my illness. Hospital stays, doctors appointments, and so on. There was even a birthday I spent in the hospital.

At first I was hesitant to include these not so happy memories in my scrapbook. But I realized that these were experiences that I also wanted to remember. These bad times in my life are part of what makes me who I am. So I put them in.

The actual time I spend scrapbooking is therapeutic. It exercises my creative muscles and helps me relax for a few hours while I design and arrange, cut and glue, label and decorate.

It’s actually rather therapeutic to scrapbook memories of my illness. Once it is scrapbooked, it feel more concretely in the past. And it can help me look to the future. For instance, I did a page of my me taking my first few steps when I first started walking again. Now I am able to walk around a store! I can look back and remember it and see how far I’ve come!

There are many things that define me a Novel Patient, mainly my collection of unusual illnesses, symptoms and side effects.  But one of them has nothing to do with being sick.  If you recall last November, I started writing a novel.  It’s working title is The Alone Elevator.  It’s a coming of age story set in a dystopian future about the pains and trials of going up and the importance of the freedom to think for yourself.  Here’s a brief summary:

Chosen to attend the prestigious Riddlebane Academy, Kylie Lockmore soon learns secrets that turn her world upside-down.  From the drug her grandmother invented to control the populace to the missing sister she never knew she had, Kylie is forced to question the truth and decide where she stands.

As I’ve been writing this novel I’ve been thinking lately about how I define myself.  So much of my life revolves around and is affected by my illness that it can sometimes feel that that is all I am.  But that is not how I want to be defined.  I am more than a sum of doctors appointments and hospital stays, symptoms and side effects, walkers and wheelchairs.  There are so many other things that define me.  And it occurs to me how important it is that I remember that.  I am a creative thinking feeling being.  I am a graphic and web designer, a scrapbooker, a novelist.  I am a daughter, a sister, a friend, a child of God.  I am so much more than just a “Novel Patient”.

But how do others see me?  Do they see just a “sick girl” with a walker?  Or do they see the real me?  I think that the more I define myself as I want to be defined the more people will see the me I want them to see.  If I focus on being a patient that is what will define me.  But if I focus on being a Novel PERSON…  well that is what I will be and radiate to the world.

Here is an excerpt from the first draft of my novel:

The Alone Elevator Chapter 1 Excerpt

I’m Daddy’s little girl all grown up, but I still need my daddy.  I want to bask in his strong embrace.  Instead he gives my heart a chase.  He pushes me away into the wrong kind of space.

My dad and I hold polar opposite believes when it comes to the treatment of medicine.  I believe in studies and the scientific method.  He believes in testimonials and isolated case reports.  But that it is neither here nor there. In our differential beliefs we are at in impasse.  And no matter how I beg and plead I can’t get him to respect my wishes.

I even tried a different tact.  I recently agreed that once I am recovered from this current hospitalization I would agree to spend two sessions with an alternativie medicine worker of his choice and fully hear them out and what they think I should do for my health.  But then, my dad went the very next day against my will and set up a consultation between an alternative medicine doctor out of state and my current internist.  This is only one recent example of what has gone on over the years as I have struggled to find my path to health and he as struggled to get me to follow a completely different path.

Feelings are hurt, boundaries has been crossed, trust has been broken.  I am left unsure if I want him in my life at all right now.  As much as it would hurt to cut him out when I need his support the most, he doesn’t seem capable of giving me the support I need anyway.  So much trust has been broken.  I just want him to hold me and tell me it it will all be okay.  Instead he hold me at arms length and tells me what I’m dong wrong.

And the stress from this has been tremendous.  I can’t stop crying.  Between the being sick itself (34 total days in the hospital and counting) and the fear of the great unknown – all we really know so far is that my problem is with some kind of inflammation in the brain stem – it might be MS (multiple sclerosis) or something like it.  And then there’s my dad making it worse.  Telling me the treatment I’m choosing for myself is going to kill me.  He needs to respect that its my body and my choice and he just can’t for whatever issues he has gong n his inner psyche.

So in the meantime…  I will get by without him.

EDITED: to include clarification about my willingness to see certain alternative medicine practictioners.