Q1: Has your life been touched by a Traumatic Brain Injury?
Q2: How have you been touched by a Traumatic Brain Injury?
Q3: Summary – the cause – the injury – today’s quality of life?
Two falls 1 1/2 years apart. First one , my sandal sole caught under the edge of a speed bump that was only pegged to the pavement. I was walking fast so my leg wristed in my hip turning me sideways. My momentum caused me to fly in the air to land ten feet away from where I tripped. I landed fully outstretched on my left side. Nothing broke but when I was able to sit on the macadam, I was totally puzzled about how I fell. I had no idea of how injured I was. I was alone. People nearby did not come to help me. I was in the parking lot of Fallon Community Health in Leominster, MA. The second fall in Dec., I was getting out of my car at home, not quite realizing how slippery the driveway was. My feet slipped out from under me. I landed on my tailbone, falling all the way back, my head hitting the icey pavement. Again I was alone. My home was in a semi-rural area. Even after 22 years, I have some fear of walking in unfamiliar territory, uneven ground and on snowy surfaces. There is an escalator in Boston, MA that I cannot go down because it faces the cavernous room of the T-Station. I was 59 yrs. young when I had the first accident; I am 81 now. Those injuries finally came back to bite me, requiring hip replacement operations; 2012 and 2014. An accumulation of smaller falls over my lifetime plus those big ones, I have lumbar spinal stenosis to deal with, modifying my activity. I did have a good recovery from the hip ops. From the head injuries, I still have some trouble with the cognitive and memory fragmentation that I was diagnosed having, 4 and 10 years post injury. That backwards sentence is one of my symptoms confusing what I tried to say. My health otherwise is very good. I am very fortunate to be disease free. My PCP says I could have ten more years. I told him I need 20 to finish all I am doing. By the way, those operations were the first and only ones I ever had. My only difficulty, in regards to them, was the after effects of the anesthesia or maybe it was caused by the whole process. I don’t want to write about that now. I am getting tired with all this thinking and typing. I have been trying to write a memoir of my recovery from the head injuries for a couple years now. The ops got me off track. I have been trying to get back in the flow of that writing. I have difficulty organizing all that I journaled that is the material for my Memoir. I wish there was someone who could help me. There is the Nat’l Assoc. of Memoir Writers but their yearly membership fee is $148. Not available from my income. So I search for all the free information and support I can find anywhere.
Q4: Please share your experience at the time you became aware of the injury?
I had been divorced for six years, graduated from college at age 57, for 2 yrs., into developing my home-based business, “Ele’s Designery”, doing clothing alterations and other sewing, plus, designing and home manufacturing children’s bibs. I had been in a new relationship for one year when I ‘flew in the air and landed ‘whack’ on the pavement’. It wasn’t long before I began to be aware that I wasn’t quite right. But, I had no idea why. My PCP at that time saw nothing wrong with me. My partner was frustrated by changes in my behavior. It was particularly difficult because he was my Business Consultant and we had been having a wonderful time getting to know each other. I really didn’t ‘get it’ that I had suffered a brain injury until after the second accident. It was 2 1/2 yrs. after the first when I went to a Massachusetts Rehabilitation Commission Conference in Boston with my sister. Listening and talking with people there, it finally hit me that I had a brain injury. I went to our hotel room and beat up a pillow raging at Dr. Coit for not recognising my injury and leaving my in physical, mental and emotional pain. A few weeks later I wrote a poem about all of this. I would like to share it, if someone who reads this will tell me how and where, contact me at < email@example.com>. By the way, my injuries prevented me from continuing my business. I have tried to get help for it but without money, all doors are closed to me. Even Mass. Rehab. Comm. would not help me except when I was able to be regularly employed.
Q5: Tell about the experience immediately after the injury. Surgery? Coma?
The day I was first injured, I had just left the office of my PCP. As I have written above, I fell in the parking lot of the medical clinic. I sat on the pavement assessing what had happened and why, not understanding then what had caused me to take a flying leap of a fall. I was able to determine that I had no broken bones so figuring I wasn’t hurt too badly, I got myself up to stand. I don’t remember feeling dizzy then so I figured I was alright to drive home. I was concerned about the time because I had an appointment at home for my first customer for my business, Ele’s Designery. As I recall now, the drive home, about 2 miles, was uneventful. My customer arrived about 15 minutes after I got home. After introductory conversation, I set my full length mirror up against a door in the inner hall area, the only place I had to do this. When I turned around to talk to the woman, I heard a scraping crash. The mirror had fallen to the floor, broken into many pieces. I have evaluated this situation occurring because of the injury. I was not able to use good judgement and probably was beginning to experience some shock. I managed to finish taking care of my customer. After she left, while I was sitting, I began to not feel so well. I called my PCP, told the receptionist about falling but she did not have me return to the clinic. I was accustomed to chiropractic, so called and got an appointment in two days. No matter what I told my usual medical people about how I was feeling, what I was experiencing, no one believed me. It wasn’t until two years later that A physiatrist diagnosed the truth that I had suffered a brain injury. He prescribed a low dose of Ritalin to help me with concentration and focus issues. When my PCP found out, he objected and sent a letter to me registering his disapproval as well as his determination that I did not have a brain injury. This letter will be included in my Recovery Memoir, ” A Survivors Journey, Living with a Mild Traumatic Brain Injury”
Q6: Tell us about the hospital stay after the survivor was no longer in a coma
I was not hospitalized. I only had x-rays and an MRI through the emergency dept. I really don’t remember clearly after 22 years.
Q7: Tell us about the time in rehabilitation?
I had very little therapy. A few weeks of P.T which caused me to be quite discombobolated during the days between appointments. I was unable to remain focused to accomplish anything, forgot I had food on the stove, forgot I had customers garments to work on, couldn’t find where I put them. When I did, I realized that I was experiencing out of sight, out of mind.
About 4 years after my injuries, I had a few weeks of Speech Therapy or Occupational Therapy for organization. Insurance limited to 8 weeks. All the rest of my recovery journey I have had to struggle through on my own with my own wits. I am fortunate to be strong with problem solving and a creative thinker because I am an artist with strong designing skills. I have had to advocate for myself from the beginning. My children didn’t see me often so did not notice the changes in my behavior. General thinking was, Mom is imagining things.
Q8: Tell us about coming home!
From June 1993, the first accident until sometime in 1995, I lived alone in my home. My partner was a frequent visitor, as I was in his home. But gradually, I was having more difficulty taking care of everything in my house. I was becoming overwhelming. I was also fearful of falling down stairs or anywhere on my property. No one would have heard me if I screamed or yelled, and no one came to visit. If I didn’t answer the phone, anyone would assume I wasn’t home at the time. This isolation became too difficult for me , so I began to spend more time at my partners’ home. There, I didn’t have to see all the things I couldn’t take care of. Life there was less complicated and I eventually moved in with him. I went to my house to do work for my business which I was trying hard to hold on to. Ultimately. I had to let it go.
Q9: “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”
confused,overwhelmed,fearful, angry, frustrated, sad, depressed, lost, dispair
Q10: What year did the injury happen? 1993 and 1994, 1 1/2 yrs. apart
Q11: Tell us about life today?
My life today? I have worked hard to get where I am, accomplishing recovery of skills interrupted. I had enjoyed sewing and various forms of fancy needlework all my life. My injuries left me with some of the knowing but the inability to do them, sometimes it was lacking the dexterity, other times I couldn’t hold the count of stitches or place in a pattern for the seconds it took to look at the piece I was working on. I think it was around ten years after being injured that I began to get these skills back. Now needlework is a regular pleasure again.
I have had to adapt to doing many of my activities differently or in some cases not al all. Some because of loss of ability, and now I think I have to add, because of aging. I have about equal disability, cognitively as physically. They both are irregularly available to me. Even so, Other than the needlework, my life is wrapped around indoor and outdoor gardening, creative art designing and writing. For the later, I am a member of a writers and poets group, writing my recovery memoir, a collection of stories memoir, short stories and essays, and an occasional poem. I am also a member of the Gardner Area League of Artists. Currently I am preparing some of my Recycle Art Note Cards to sell at a Fall Fair.
I am married to Fred since Oct. 2000. We met in 1992, and were enjoying our developing relationship when I was first injured in June, one year after meeting. In 1994, he was injured in an auto accident. Our life has been a rollercoaster of accidents leaving us with cronic pain from the injuries. We are constantly finding ways to cope with our losses through the activities we enjoy in our home.
Q12: What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?
It took up to two years before I knew and understood that I had suffered a brain injury from the two falls. Something I read caused me to start thinking about who I was before injury. I asked myself, “Who are you? What do you know. What can you do?” My first accident generated a legal case. My lawyer told me to journal about everything; activities, and physical condition every day. I wrote a lot and those journals are the basis of my Recovery Memoir.
I journaled on those questions to find out what had not changed and what I could do about what had changed. I found there were facets of myself that I knew were who I was, and had always been. I explored my knowledge of things I had known how to do. When I was cut off from some, I found another way or let it go for a while. Some Activities I picked up later as I had healed physically or cognitively. So ultimately, I would focus on that which I could still do without too much difficulty, and gradually tested whether I could do things that I thought may be lost.
Because I had a mild T.B.I., I believe I wasn’t afforded much therapy. The health insurance governed how much for how long and what type. I had Physical Therapy which caused me confusing side effects which were not addressed by my PCP. I believe he wrote in my medical records that I suffered from some sort of neurosis. No matter what I told him about what I was experiencing or information I brought to his attention, he never diagnosed brain injury.
It wasn’t until I joined a brain injury support group at a rehab hospital and met a Physiatrist there that I received a diagnosis. After that, I received Occupational/Speech Therapy for daily and speech organization. This is when I learned that the injuries had caused some place in my brain to open up causing me to be using higher intelligence language.
As time passes, I recognised that when I was injured, knowledge of brain injuries was still limited. Great strides have been made just in the last ten years. Also, the Brain Injured Associations have become stronger advocates for all of us Survivors of any type of brain injury. I believe my story would have been very much different if I had had access to the services and knowledge available today.