Do you ever wonder what your world would be like if you could not remember something you did yesterday or if you thought it was March 2012 when it was actually July 1, 2016? Have you considered what your life would be like if the part of your brain that tells you to do the next thing you should do was diminished? Things like stopping at the crossing or going in the shade because the sun is to hot would be foreign concepts. What would your favorite meal taste like if that part of your brain that relays the information of smell and taste was impaired? Remember that great page turning book you read last? How about if reading was one of your favorite past times and that became very difficult?
What if your processing skills were must slower than the average person and following television programs, movies and conversations was difficult because it all moved much faster than your mind could grasp? What if in the course of a day you frequently felt lost?
Those are just a few realities in the life of someone with leukodystrophy.
Seven and a half years ago I began working for Melissa. I have learned so much about the disease leukodystrophy and how to interact in a positive way. It is important to educate one’s self when dealing with people who have any situation that requires enhanced understanding.
In the very near future Melissa will be offering a donation to a leukodystrophy organization. This is something she feels very good about. She wants to ease the burden families feel especially families caring for loved one’s in the late stages of this disease. Insurance only covers so much and the cost of medical care can be a burden families could just do without.
As I have worked with Melissa in her daily life and with her at Southeast Center For Independent Living. I have seen a woman with great compassion for other people. This has been something I have admired from the start.
In a world with no shortage of short tempered, critical people someone like Melissa is a breath of fresh air.
Today my message is about the importance of educating yourself about diseases, impairments, struggles, handicaps, disabilities and finding ways to meet people were they are rather than standing in the space of frustration waiting for them to
respond to situations based on how you perceive them. Perhaps you are fortune to have good health and rapid sequence life is just fine. It isn’t fine to some who can’t follow along that quickly.
Melissa attends a fabulous group, Buzzard’s Bay Speech Therapy. There are people from 20 – 80 in this group. I have never met such impressive people in my life. A college professor, a master’s degree art student, an extraordinary pianist,
former gym teacher, bus driver, restaurant owner, receptionist are a few who occupy seats at a table of cohesiveness. Under the direction of two of the best speech therapist in the region minds are being challenged, goals achieved and friendships formed.
Melissa experiences many difficulties these days. When she is volunteering at SCIL and someone comes to the office or calls on the phone needing help she has the most sympathetic ear anyone could have. She desires with all her heart to direct the person to someone who can assist. She listens. I’ve never known a better listener.
I see her week after week interacting with people. I see people look past her because she is in a wheel chair. People ask me a question that should be directed to Melissa. I ask myself who has the deficits here?
She’s is a shining light in the face of a debilitating disease. Anyone who cares to spend sometime with her and listen with as keen an ear as she has will surely walk away enhance.
Slow down the pace, kick down the tone and savor an extraordinary person in your life. See what you learn.