|The Rehab Experience
Grand Rounds: Patient Experience, Rehab
Like most people, I'd given little thought to rehab hospitals -- until I landed in one.
The short clinical overview of my case: initially not expected to survive, subsequently not expected to walk again.
What was clear was that I needed rehabilitation to at least attempt to recapture some degree of my former functionality -- if possible.
After I emerged from the coma at Beth Israel, my husband, Bruce, diligently researched rehab hospitals. He finally spoke with a family friend who heads a hospital north of Boston. Without hesitation, he said that Spaulding Rehabilitation Hospital, in Boston, was a "10" among rehab hospitals. That was all my husband needed to hear from this knowledgeable and objective source. Also of great comfort was the assurance that I could be moved back to BI within 15 minutes, if necessary, as well as Spaulding's affiliation with Mass General, next door.
In effect, I would be surrounded by Boston's Harvard Medical School teaching hospitals, which was ideal for someone in my condition.
From the beginning, my case seemed all but hopeless.
The disorder I had was very rare -- Acute Demyelinating Encephalomyelitis -- and the prognosis extremely poor. When I arrived at Spaulding, no one could predict what would happen. Doctors told my husband that I might begin to show some progress by Christmas. (It was June.)
Privately, I learned later, they expected me to remain quadriplegic "indefinitely."
At the beginning of my stay at Spaulding, I wasn't exactly sure what was happening to me. I was still fairly loopy. I'd been literally "out of it" for nearly a month: comatose, then cognitively and physically impaired -- and extremely weak.
But things set in motion soon after I arrived. Beginning with my devoted primary nurse, Teresa, a number of different people began to come through my room, each one with a specific mission for me: doctors and Harvard Medical School teaching fellows; a dedicated, round-the-clock nursing staff; and physical, occupational and speech therapists. I could hardly keep them all straight, or what I was supposed to be doing and when. But with the guidance and care of those wonderful nurses, led by Teresa, I came to realize fairly early on that I had work to do -- and that all of those great people were trying to help me recover.
As hopeless as it seemed.
But my caregivers were not only talented clinicians, they were psychologically adept, as well. Not one person involved in my case ever gave me anything but encouragement and help -- and hope.
In addition to my general confusion, my self-awareness was seriously diminished. Although I knew that I was impaired, I never thought of myself as a quad. I truly thought that I could do things that were clearly impossible at the time. For example, I had the idea that I could "hop" into bed from the wheelchair -- when I was paralyzed from the neck down, and also that I could do exercises that just weren't possible early on.
I began my rehab experience by flopping in a wheelchair: propped up, and buckled in with a seatbelt. At the beginning, it took three people to work with me: two to hold me up and keep me from falling over, the third to do the actual therapy.
My first session was very puzzling to me. They wheeled me down to the gym, and after unbuckling and transferring me from the wheelchair to a raised mat, they put a large, slate-covered box on my lap. They propped my arms on either side and asked me to try to move them -- as best I could -- across the top of the box.
Well, I couldn't move them. I couldn't move anything but my neck! And I had doubts about my therapy from the get-go. Before my illness, I'd been a healthy, active mother. I had two young children; I skied and sailed and beat my husband at tennis! I wondered how such minimal movements could amount to anything. Would it be enough?
Did they know what they were doing?
After asking my therapist what my chances were of leaving Spaulding without a wheelchair -- as I slumped over in one -- I was returned to my room: to wait for another session, another day -- to try again.
On one of my first days at Spaulding, a couple of VIPs came to visit. My three-year-old daughter Lindsay hadn't seen me in nearly a month; only my seven-year-old son Westy had been with me at BI, on my last day. Bruce thought it would be too scary for Lindsay to see me with all the equipment, breathing tubes and IVs. For weeks, he couldn't even tell the children that I would be coming home.
But he finally brought them to visit that first Friday at Spaulding.
I was thrilled to hear Teresa announce their arrival. It was like the whole world coming into my room. But I couldn't hug my children because I was quadriplegic. Weeks later, after I'd begun to recover, Teresa said that she went home after witnessing that scene -- and cried all weekend.
I tell that little story because it epitomizes what happens at Spaulding Rehab. Patients are in rehab for an average of five or six weeks, and, as in my case, the caregivers -- with the nurses leading the way -- become like family, in a way: a hospital family.
As hard-working and diligent as my team was, there wasn't much progress in the early days. But they never gave up on me.
Dr. Stein summed up the Spaulding experience beautifully when he said, "We're in the hope business."
I loved that phrase, and I knew that every one of my caregivers understood it perfectly. They were so patient and kind, not only to me, but to my family: my husband and children, my elderly mother. They tolerated my delusions, speaking to me gently, as one would to a child.
It was a delicate balance they had to strike. They couldn't raise false hopes, yet they never diminished hope.
From the beginning, my overwhelming, seemingly outlandish goal was to walk out of Spaulding Hospital with my family: I just had to get home! And I knew that every member of my team understood that, because Bruce brought the children to visit nearly every day. I spoke to them on the phone several times each day -- at the beginning, with the nurses holding the phone to my ear.
More than anything, I wanted to be a fun, active mom, again. Every move I made was toward that seemingly impossible goal, beginning with merely wiggling my toes -- exercising them, I suppose! -- when they were about the only things that would move.
But, as my PTs explained, I first had to be able to sit with balance, and then stand with balance. Only then could I begin to work on the walking. Leading up to that were many other challenges that my team set before me, step by meticulous step:
* Speech therapy: to teach me to swallow food again, restore my speech, and help me return to my former cognitive ability.
* Physical therapy: to strengthen, through exercises that were so arduous they often left me feeling light-headed, and to help me up to the standing table and other milestones.
* Occupational therapy: with bridging exercises to strengthen my wobbly hips, weight-lifting for my weakened arms, and "thera-putty" to strengthen my hands -- to learn how to move around a home setting.
* Then, ultimately -- finally -- working with a variety of walking devices.
I had a "Dream Team" at Spaulding Rehab. My doctors, therapists, and those magnificent nurses -- who were with me more than anyone, who kept me alive -- who were there for my triumphs as well as my setbacks -- all supported and encouraged me from the very beginning, even though I must have seemed like a lost cause. They were so thoroughly talented and caring. They did everything they could to help and to challenge me. My magnificent PTs, Dawn and Janice, especially took chances, trying things that might have seemed risky, but which somehow worked and set me forward, even incrementally.
My rehabilitation at Spaulding was extraordinary and, in the end, exquisite. My clinicians could not have been more thorough, creative, challenging, caring or kind. But mine is just one of many Spaulding stories. My medical case may have been unusual, but I know that my experience at Spaulding was not.
One of my doctors believes -- and I very much agree -- that it is possible for the body to learn from its successes. I began rehab with the most minimal progress. Then, with the brilliant coaching and guidance of my Spaulding "Dream Team," it all came together to add up to nothing short of a miracle.
And it's happening right now, back at the hospital.
Excerpted from a speech delivered by the author at a medical conference sponsored by Advance Magazine, in Boston, Massachusetts, October 2002