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Emily's Story: Inpatient Rehabilitation Stay

Just like every young woman, Emily has dreams about her future and what she wants to do with her life. One is to travel to 30 countries before her friend does (she has been to 19 so far) and another is to go back to work as a pediatric occupational therapist. At just 29 years old, Emily is well on her way to accomplishing both.

Ten years ago, after years of experiencing several health complications, Emily was diagnosed with Ehlers-Danlos Syndrome (EDS), which is a genetic condition that affects connective tissue and is generally characterized by hypermobility of the joints, hyperextensibility of skin and fragile tissue. Her severe case of EDS caused her debilitating pain and affected her ability to walk and stand for long periods of time. Emily knew that surgery was her best chance at improving her pain, preventing further damage to her spinal cord, and allowing her a better quality of life.

In early 2018, Emily had visited a friend who was a patient at the inpatient Rehabilitation Center at El Camino Hospital Los Gatos and remembered it being bright, peaceful and not like other medical facilities. She remembers saying to her friend, “If I ever need to go to a rehabilitation center, I want to go here.”

In early July, Emily underwent a nine-hour full neck stabilization surgery. Her doctor impressed upon her that rehabilitation would be necessary for a full recovery from surgery. Remembering her friend’s positive experience, she opted to go to the inpatient Rehabilitation Center at El Camino Hospital Los Gatos for her own care.

Emily stayed at the Rehabilitation Center for nine days. When she arrived, she struggled with her mobility, was very unstable, and couldn’t walk down the hall or step up onto one step. “The first physical therapy session was a wakeup call for how bad off I was. It was emotionally challenging. I have stairs at home and I was thinking in my head about how every aspect of my life was going to have to change,” explained Emily.

She progressed to being able to slowly walk up the stairs by pausing in between each one and is now able to easily climb the stairs. In addition to walking, Emily’s other biggest challenge in recovery was dealing with post-surgical pain. Her occupational therapy sessions taught her new ways to do everyday things, like showering and navigating her everyday tasks that would help minimize pain and make it easier to do. Following her sessions, Emily was able to think about how to reintegrate back into normal life, “I see my recovery in context to having a major surgery. It will take time, but will not impose huge, sweeping, drastic limitations in my life.”

One day during her stay, Emily was curled up in bed due to pain when Nili, an artist with the hospital's Healing Arts Program, stopped in to see if she wanted to create a piece of art. She lit up at the opportunity to engage her creative talents. Emily loves doing art, especially drawing, and she recently started experimenting with watercolor.

“The thing I appreciated most about my Art at the Bedside session is that I had a choice. I couldn’t do anything without help from someone else. I had to ask people for everything and it was nice to suddenly have choices and be asked, ‘What do you want to create?’" shared Emily.

She continued, “Nili did a great job of gently figuring out my limitations and guiding me toward things I could do with the least amount of pain. I was so absorbed in the art process, I was no longer thinking about my pain. It took me out of the “four walls” and into the world I was creating with my art. The mask I was working on was not heavy I could hold up my arms and hands for a long time without feeling any pain. We talked about symmetry and color choice. It was nice to talk about non-medical things and converse about art choices and flow of art. I was able to put off my pain medication for an hour or two because I was absorbed in what I was doing.”

Not only has Emily been able to regain her mobility and learn new techniques to care for herself, she also has a mask full of vibrant colors to remind her of her journey. Emily reflects on her time at the Rehabilitation Center at El Camino Hospital Los Gatos, “This is the place I wanted to go to. I can’t imagine anywhere else would compare. The results are far beyond what I hoped to achieve within this time. It’s the most efficient and best outcome I could have had.”