After living with an auto-immune nervous disorder, you leave the hospital (hopefully for them last time but also staying realistic). They kick your butt out and you can't wait to get home. You imagine your comfortable bed and your pillow that smells like the years before you (and days before your illness). You imagine that soon no one will be waking you up to take your blood pressure 50 times a night. You imagine being able to make out with your loved one (even if you haven't regained sensation on your lips) without anyone walking in on your stolen kisses. You imagine cuddling on the couch with your children and watching movies while laughing and rejoicing. The problem is, you're imagining life before your illness. Not the life you're about to be jolted in to.
On the car ride home, reality starts setting in. You start running through your home in your head and realize the hallways are narrower than at the hospital. At home, your bathroom isn't one open room like it is in the hospital. With guilt and confusion, your mind starts screaming "take me back! take me back!"
I remember the moment we arrived at home after being hospitalized with Guillain-Barre Syndrome. I was so glad to be home with my children and to sit on a couch instead of lying on a hospital bed. The world seemed loud. After being in a sterile environment for months, just the sound of a TV, people, traffic, and the birds all seems overwhelming.
When we got out of the car, I realized entering my house was impossible. I had to climb up two steps and I couldn't even use the walker by myself. I had never noticed all of these hurdles, the thousands of things I had taken fore granted. On top of that, we had no bath tub at home (well, we had one low to the ground and lifting me out of the tub would have been too difficult). The real kicker though ... all our bedrooms were UPSTAIRS.
We soon had to plan my husband leaving for work and my day working around that. We needed "babysitters" to help me throughout the day (sure they were friends but we both knew that I couldn't even get myself a glass of water) but nobody could carry me down the stairs other than Evan. When he left the house at 6:00 am, I came downstairs at 6:00 am (that's early!) If he didn't get home from work until 11:00 pm, I didn't go upstairs to sleep until 11:00 pm. His schedule was my schedule. I was a prisoner to his life and coming from an independent woman, this was frustrating and just flat out annoying as hell.
It is completely and utterly normal to start disliking being home. At the hospital, you're in this sterile environment but you're also in a setting where your disabilities don't seem nearly as obvious. The hospital is made for people like you. Home is made for people before your illness and it becomes so apparent that you're not the old you the second you step in to your home.
The emotional toll of coming home is normal. You feel guilt for wanting to go back. You feel guilt because you're not going to be the Mommy you wanted to be or the wife or the spouse or the friend.
Guilt is not permitted for feelings of frustration at home. You want safety, you want to feel like you're still recovering and getting better. Slowly waiting for that is frustrating. Doing it at home for everyone to watch is embarrassing. So yes, you can wish to go back but you won't. This is when growth happens. This is when your children see how amazing you are, even in moments of weakness. This is when your spouse and you can hold each other and cry together without interruption. This is when the healing begins.
The day after I got home we celebrated Christmas with our children. I couldn't help my children unwrap any gifts. I couldn't use my phone to take pictures. I just laid down on the couch and felt miserable. Miserable about myself, miserable in pain, and miserable because I saw no future where I was going to be an asset to my family. I felt like a complete and utter burden.
But here's where I tell you, do not be me.
You are not a burden. You are actually really damn amazing. Do not look at the world in grays and blacks. Your heart and your mind need to see the beauty in life - look at the sun, look at those clouds. The color of your life needs to bright, because your story is bright.
This line isn't linear. Maybe you'll take steps back (for example, I had two coming home stories. I had to be rehospitalized with a relapse) but no matter what, your life is full of color. The way in which we speak to ourselves is an integral part of our recovery and our journey.
Instead of the feelings of desperation, after a while (an embarrassingly long while) I started talking to myself differently ...
I was hospitalized for 2 months and can you believe it? They said I was healthy enough to come home! This house was my own oasis. I was going to start regaining sensation and was able to feel my own blankets on my skin. My husband held me while we climbed the stairs together as a team everyday. Everyday I attempted to do a little bit more by myself. I was able to see my kids open their Christmas gifts because my nerves had regenerated enough that I was permitted to come home. I was able to see their happiness as they played with their new toys. On Christmas night we all laid down and watched a movie together while my husband put his beautiful arms around me and told me how much he loved me.
My world is bright - yellows, bright blues, everything that screams light and love. That's me.