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The End of life in the “Bubble Room” – Surviving The Bubble

The End of the life in the “Bubble Room”

The days and nights spent in the “bubble room” seemed to never end. My schedule was strictly enforced every day.  Regular visits with the counselors, child life specialist, and homeschool every day.  I did not like my teacher.  She was an older lady that was supposed to be teaching me 4th grade work and I felt like she treated me like a Kindergartner.  Every day around the 2pm hour, I was complaining.  

Bedtime was scheduled for 10:15pm Sunday through Thursday and 11:00pm on Friday and Satuday.  I was allowed to read Bible Stories for 20-30 minutes right after bedtime if I wanted to. This board with the schedule was right outside my room and was rarely changed except for the doctors and nurses that were on call. 

The day finally came that the doctors gave me the “go ahead” to leave! My treatment was far from over, but my time in the “bubble room” had finally come to an end. It was time to go back to reality……well, at least my new reality. 

I will never forget that day. 

The loneliness and lack of sunshine had definitely taken its toll.  I think emotionally the hardest part of all of it, was the lack of skin to skin touch.  I don’t think I realized just how much I had missed it until I got it back.

My mom was the first one to come into the room without her “spacesuit” on, and of course, she wrapped her arms around me tightly and cried. I’m sure there were tears of joy mixed with fear, but mostly tears to be able to touch her baby girl again. Unfortunately for her, that moment would change our relationship forever.

My mom had always had the softest skin. She used lotion on her hands frequently and kept good care of her olive complexion.  In fact, I was always proud as a child when people would tell me “You’re lucky, you have your mother’s beautiful skin”.  So why did a touch that I had known my whole life feel so foreign to me?

As soon as she held my hand, I had an almost knee-jerk reaction.  I was so used to the dry, chalky feel of the “spacesuits” now and her soft skin felt almost alien.  It was scary.  I didn’t recognize my own mother’s touch anymore.

We have spoken several times in the past years about that day and how so many things changed from that moment.  Counselors have told my mother that I would most likely take my emotions and anger out on the person closest to me, and that usually ended up being the mother.  The one person that was probably hurt the most and there for ALL of it, was the one person that was going to end up taking the brunt of it.  I know as a child I didn’t understand all of this and I was just trying to cope, but this is something that has haunted me for years. I need to always be in complete control of physical touch at all times. I need to be in control of who touches me and when.   

For months, I was not in control of my body.  I wondered every day if that would be the day that my body would give up and I would go to Heaven.  The doctors, that I was told over and over were only trying to help, were putting me through more pain than I had ever even imagined.  I started to react to touch like a scared, abused animal; running away from the “bubble room”  however, was not an option.  I was very young, but growing up very quickly.  I had learned to bottle up all my emotions and store them somewhere deep down because there was nothing I could do to fix them.

The best feeling I had felt since the very beginning of all of this, was the moment I was allowed to walk out of the Laminar Air Flow unit and outside the front doors of the hospital. It was the first time in over three months that I had taken a breath of fresh air and felt the sunshine on my face.  It was paradise.

The week following my release was a whirlwind.  

We celebrated Easter Sunday at the Ronald McDonald House as a family with giant chocolate bunnies and an egg hunt. My brother and I were not forgotten by the Easter bunny with baskets full of candy and toys. We were treated to an afternoon at the Santa Monica pier riding carnival rides and enjoying treats. 

The greatest news came that week when we were given permission to go explore Hollywood and go to Disneyland. I had limited time before I had to be admitted for the bone marrow transplant so we went right away.  We went to the Hollywood Walk of Fame and took pictures of our favorite stars on the walk.  We also went to Chinese Mann Theatre and watched Beetlejuice.*And yes, that ticket stub does say $3.00 for a child priced matinee…..oh how times have changed!

Then it was off to my favorite place on Earth! My family each took turns pushing me in a wheelchair.  I had no energy, but my enthusiasm for that magical place was hard to hide.  If I could have chosen (and let’s be honest, if I could STILL choose) anywhere in the world to live, I would have an apartment right on Main Street U.S.A., Disneyland, California.  *Side Note: Anyone that knows me is having an “Oh…….that’s why she loves Disneyland so much” moment right now. 

To this very day (and the detriment of my poor husband), Disneyland is still my favorite place on the planet.  There was so much magic there that day.  I was outside, riding rides, enjoying the sunshine and pretending to be “normal” for a full day.  No pain, no needles, no doctors telling me what to do. For one entire day I was able to be outside of my experience and just have fun.  Pure joy can be found in the smallest things in even the darkest moments.  A smile can truly be the best medicine. 

There is a sign in the very front of the park as you enter.  For me, that day in April, 1988, this couldn’t have been more true. Thank you Walt Disney!

To continue reading “My Story”, go HERE