the light and the dark

awesome & creativebaby announcements-3

I’m in a funny place, friends.

After weeks and weeks of worrying about the move, it finally happened. We have settled in to the new house and slowly boxes are being unpacked, rooms are taking on new personalities, and we are finding out what we love about our new town.

It has been a compete 180 in so many ways within a really short period of time.

As soon as we moved we have had instant daily support. My brother and his finance drove up to see the new house and we all went out to dinner now that we only live an hour away from each other.  Mom pops by to say hi and asks if we need anything while she is out. My best friend lays in bed with me while we each do work on our computers. My cousin drops off cookies and says welcome to the neighborhood.

Because the house is all on one level, I no longer feel so acutely isolated. I felt like a prisoner in the upstairs bedroom before and now I no longer feel that way. I am much less reliant on Sean getting me food and water which is less stress on him and totally a boost to my self esteem by allowing me to feel more “normal”. I have been able to do dishes, unpack, occasionally feed the dogs etc all because I am no longer struggling to get up and down stairs or get into another room. We got a new couch that has a chaise lounge at one end so I can finally lay comfortably in the living room and watch TV, something that has rarely happened this year. I feel more “normal” than I have in a long time.


There’s been a few snafus with how to get around but it is easily solved. The wheelchair I have been using is pretty wide and thus cannot make the turn into any of the bedrooms or bathrooms. So I started using the wheelchair in the living room and kitchen and switching then to my wheeling walker when I need to get into one of the other rooms but it quickly become evident my body cannot handle that much walking.

On Wednesday after my IVIG infusion my body decided to explicitly let me know that it is TOO MUCH.

I don’t know how to explain my pain sometimes. How to help people understand what it feels like in my body. A lot of times I don’t even try because the explanations sound crazy and not humanly possible. “I feel like I have a migraine in my leg and foot while it is sumlutaneously being squeezed in a vice and continually being slammed into a bucket of ice cold water.” When I walk it feels like both feel are walking on broken glass or hot coals. It sounds insane.


It feels insane.

Thursday was awful. I would’ve been ok being struck by lightening or swallowed up in a hole in the earth. Basically I would have been ok not being awake or even alive because the pain was so severe. My mom came over and sat in bed with me and tried to keep me calm since that amount of pain can make me really really anxious. We began the always fun “Do you think you need to go to the ER” game but thankfully we were able to come up with some ideas to get me more comfortable.

God bless my mama.

She was also able to help find me a new wheelchair that is much more in synch with my booty width and is LIGHT (19lbs!!) It has made a HUGE difference. Switching to using the wheelchair predominantly is definitely what my body needs right now. I can now zip around the house like the speed racer that I am.

It was kind of a hard hit after riding on this “new house/new life” glow. How my pain will follow me no matter where I go. How a change in scenery can change my mood but can’t change my cells, nerves, joints.

I have thought a lot in the past week about how I am swimming in the pool of duality. How I am toeing the line between the dark and the light.IMG_6633 copy

Being in so much pain that I am literally debilitated is soul crushing. Not being able to get out of bed and walk normally is absolutely frustrating. When we first found out that my wheelchair didn’t fit in the new house I was filled with so much anger and frustration. Anger that I have to be in the idiotic chair and frustrated that it is such a freaking hassle when this world isn’t that wheelchair friendly and bitter because I just want my old body back. Sean had to remind me that the house was beautiful, our lives are so much better now and to let my gratitude for that overtake the frustration that I have. It was a reminder I needed as sometimes I let these feelings get the best of me. I don’t mean to but I definitely can allow this situation to steal my happiness.

IMG_6639 copy
I still feel insecure when I go out. Not as much but I am still acutely aware of when people look at me in the chair. I hate that I can feel ashamed or worried that people are staring or pitying me. I wonder if they are thinking “Oh how sad she’s so young to be in a wheelchair. How hard that must be”.  Its very hard. But what they may not know is that I am still capable of joy. I am capable of feeling huge surges of happiness because my life is so wonderful. I have lost things I never thought I would lose but my life is not all about loss. My life is a multi faceted crystal and sometimes the light hits it and everything shines everywhere and sometimes it doesn’t.

How can I be so happy and still be in so much pain?
How can I be in so much pain and still be happy?

These questions swirl around inside me.

I can exist here in the light and the dark.





Leave a Reply

Your email address will not be published. Required fields are marked *