Category: Family of TBI Survivors Written by Family Member
Summary - the cause - the injury - today's quality of life?
1983 son Ed on bicycle, hit by car throw 100 meters in air of car hood to opposite side of street in Germany. Today is 39 (triplegic in wheelchair) lives in Arizona in own apartment (1 mile from Mom)assisted by staff w/meals/appts, etc. Works in sheltered workshop with ceramics. Good quality of life with friends and is loved by all. Loves to go to WalMart and visit.
Only downer is - parents are divorced (25 yrs) and father lives in CA, but has never developed relationship with Ed (cannot accept disability).
Please share your experience at the time you became aware of the injury?
Just came home from work - husband home but visiting with Army buds. Ed not home. Neighbor's son came running up to our apartment and said Ed was at corner and had been hit by a car. Friend drove us to scene - husband got in ambulance with Ed. We met up at a hospital emergency room and they were already loading Ed into another ambulance for transport to University Klinik. We followed in car and it was raining by this time and sirens were blaring and we had hard time to catch up.
Tell about the experience immediately after the injury. Surgery? Coma?
Ed was already in surgery when we got to the right building in the Klinik. Doctors came and said they had inserted a "Richmond Screw" to measure pressure on brain and they moved him to the children's intensive care unit of the Klinik in another building. We were allowed to see him for just a few minutes that night.
Tell us about the hospital stay after the survivor was no longer in a coma
Ed was in an induced coma for three months and then weaned off. Could not speak at first, but I knew he understood that we were there as his eyes moved around as I read to him and spoke to him. He remained in intensive care from July to January 1984 and then was moved to a ward room. He stayed there and was moved to rehab center near Heidleberg, Germany, and was there for two and half years. We drove from Frankfurt to Heidelberg every weekend.
Tell us about the time in rehabilitation?
Rehab center was very large (900 beds) - All staff and doctors were absolutely fantastic. We were treated so nicely and most spoke some English, so translation was really not needed in most cases. Ed remained there and focus was mainly on the physical aspect of the recovery. He rode a special bicycle (three wheel) with supports for his back and feet; used a walker, and wheelchair. Had three surgeries (arm, feet, eye), while at center. He was allowed to come home on occassional weekends.
Tell us about coming home!
June 1986 was homecoming for good! Ed was enrolled in local German school for children with special needs. School was a challenge due to physical and mental problems (typical TBI) and language. Teachers and staff were very helpful and Ed was welcomed by all (most of the time). Ed did have some anger issues from time to time which, were perfectly understandable). Frustration at being normal at one point and then in a flash being loaded down with all these barriers of physical and mental nature. Ed graduated from this school (US Equivalent - 10th grade). Ed's Dad and I separated and he filed for divorce in 1990. Ed and I moved to a nice new building and built a new life for ourselves. Ed's older brother (by 2 years) was helpful and considerate of his brother's needs.
"Please type some single words that describe how TBI has touched your life. For example: Frightened, confused, sad, etc. Enter as many or as few words as you like. Separate each word with a comma"
Frightened, sad, angry, determined, aggressive, aware, guilt, compassion, thankful, grateful
Tell us about life today?
Ed has a good quality of life with excellent staff (thru Easter Seals Blake Foundation, Tucson, Az)(Mom works in Administration), friends, family (Mom here and brother in Europe). Ed has matured and thru good therapy has developed into a nice young man with seldom outbursts. He has made good friends and has a girlfriend. His staff assists with morning routine (getting leg braces/shoes on), transport to work/home, swim therapy 2 x week, evening meal, grocery shopping, doctor's appointments.
What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?
First class quality treatment in Europe; having translation of pertinent documents from US doctor in German Klinik: family having an understanding work environment both in Europe and in US (working for non-profit providing services to special needs population); good therapy available for family members; understanding and supportive friends; support groups; being assertive when needed; insisting on proper treatment and understanding of TBI; good research ideas from colleagues/friend in US; fortunate enough to have dual insurance (medicare/miltary) and medicaid; great doctors (aware of TBI) available both in the Europe theater and here in Arizona.