Dean's Blog

Time for a Little Inspiration

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As adult learners juggling many commitments, it’s only natural that you may feel overwhelmed with school work, planning the seminar paper or project, family responsibilities, and adapting to the pace and schedule of your program. This is especially true for our newest students who are establishing their study “pace” and presence. I feel the pressure too. I just looked at my “to do” list and some days it feels like I am so far behind that I’m still in 2014!

Every now and then when I am feeling a bit low I try to step back and take a look at the bigger picture. When I do that, I inevitably look to my youngest daughter Alaina as an inspiration, although she is no longer a child and has successfully started a career after graduating from college five years ago. She wasn’t supposed to have gotten this far. Let me tell you about the trip she took to get there, and why sometimes you have to work twice as hard to get half as much. I have told this story many times in the past but each year at this time, it serves as a good reminder and something I would like to share.

It all started shortly after Alaina had turned five, which seems like a really long time ago in some respects. At first, there were a few tremors in her left leg and arm, which after several months progressed into full seizure activity affecting the left side of her body. Up until that point, she had experienced a normal childhood and had no other indications of seizure activity. 

The problem worsened in that standard medications and approaches seemed to do nothing to noticeably affect the progression of the seizures in both frequency and severity over the next few years. Alaina struggled but worked hard to remain in school and at her grade level, but it was a lot of work for both her and the family, including her older sister. And it is a lot of work to try and be “normal” in a school setting with a seizure disorder that at times required her to wear a protective helmet.

We traveled around the country to see pediatric neurologists at noted research centers as her condition worsened, finally finding the answers to a very complex jigsaw puzzle at Boston Children’s Hospital in 1994 now more than twenty years ago.  The answer wasn’t what we wanted to hear, but after the lengthy ordeal of the previous two years we finally had a better understanding of the situation. 

Alaina underwent two brain surgeries during the summer and early fall of 1994 in hopes of remedying the seizure activity. While the surgeries were not successful, we did learn definitively that she suffered from a very rare brain disease known as Rasmussen’s encephalitis. Rasmussen’s encephalitis strikes a handful of children annually, typically girls between the ages of four and seven at onset, and progresses rapidly by attacking and destroying one side of the brain.

By the time we received the diagnosis Alaina was hospitalized with 200-250 seizures per day and required the only known intervention and treatment for the disease – a hemispherectomy. Simply put, the only treatment is to remove the half of the brain that is affected by the disease. On the day after Thanksgiving 1994 at the age of seven, Alaina underwent the procedure and spent the next three weeks in the hospital and an additional three months in a rehabilitation center in Boston.

The Road Back

Alaina was very lucky in many respects. The disease was correctly diagnosed (it is so rare the opportunity for misdiagnosis is possible) and treated by a medical team with experience in cases like hers. Without getting into lots of medical detail, she retained all of her memory and eventually learned to walk again. The next several years were filled with intensive therapy to regain a number of functions, although she will never have full use of her left leg, cannot use her left hand, and lost half of her vision. She was slowed down but not stopped by the disease. I think she can type faster with one hand than many folks I know who use two!

Through all of this Alaina rarely let down the drive and spirit that kept her going. She remained filled with energy and spunk, and returned to school shortly after coming home from rehabilitation. She also maintained her drive and sense of humor, and sense of adventure, despite going through a truly daunting ordeal. And she kept on going by finding her own way despite being different, which is not an easy task during adolescence.

Alaina graduated with her high school class in 2005 as a member of the National Honor Society and spent most of her senior year taking classes at Norwich. She can’t drive a car, but that didn’t stop her from finding various jobs within walking distance over the past few years, or being a member of the statewide Diocesan Youth Council for church. Or from graduating from college with a B.A. in Creative Writing. Or from launching a successful career as an advocate and services administrator for those seeking to live independently.  In the most recent chapter of her story she will complete her master’s degree in leadership this spring and has become chair of the Advocacy, Outreach and Education committee for the Vermont State Rehabilitation Council Council while administering several grant programs for the Vermont Center for Independent Living.

Twenty years ago, it was not certain where Alaina’s road would lead, but it has clearly gone in a good direction. At every step there has been a significant challenge; in fact, every day presents challenges that most of us take for granted. None of this has stopped her or held her back. Ever. I know the road will continue to present challenges but she has met each one and risen to the occasion.

When I start to feel a bit daunted by the challenges that face me, I try to step back and look at the bigger picture. And when I need that extra push of inspiration I don’t have far to look! Where do you find your inspiration?