Community Rehabilitation Services of Oregon
Could this really be happening to me? Was it really my turn?
Sitting in my car, I heard that huge crashing sound from somewhere behind me. It was like no other, and I remember thinking, oh God, this is serious....
In the days to follow, I tried living my usual lifestyle. That was a bust. Increasingly, I was in a stupor. I was exhausted, had headaches, got dizzy when I tried to drive, snapped off the radio the minute I got into someone else's car, muted the TV immediately, was overwhelmed by too much light everywhere, found I took forever to answer a questions, was overwhelmed by large crowds or stores, or even being in my church on Sunday mornings. Life was fuzzy and confusing. I was still in pain, and my vision was lousy. I felt Lost in a bucket of systems. I could not figure out what was going on. I had been to the doctor and then, someone mentioned, maybe a concussion. hat's when I called Community Rehabilitation Services of Oregon, again. Thankfully, I knew Jan Johnson, the Director. Many years before, we had worked together professionally, and I had the utmost respect for her clinical skills and the relationships she had with families of students with disabilities.
On a personal level, our family had such gratitude for Jan, as she had coordinated care for our high-school aged daughter who had sustained a sports-related concussion. This had not only taken our daughter out of the game and volleyball season, but a good portion of her sophomore year. The Community Rehab staff had worked intensively with her, helping to regain skills, confidence, and re-enter school with appropriate modifications. I couldn't believe it might now be my turn to experience having a brain injury. But here I was, filling out the initial self-reporting forms about my issues, with many, many boxes checked. Even as I did the first testing in the office, my lack of memory left me in tears. I knew I too was in the concussion club.
While the stupor was now very real, and I didn't know what was ahead, one thing was clear. I was in the right place to get help. The Eugene area is so fortunate to have a resource such as Community Rehabilitation. For someone with a head injury, we need to have a single site with expertise and support. I found both in abundance in every staff member with whom I worked.
Can you imagine a receptionist understanding that sleep disturbance is an issue with your medical condition, to the extent she considers this upfront when scheduling? There was no shame in needing late morning or afternoon appointments.
Since the very core of your competence and esteem of abilities is shaken, it is so critical to have support in just trying to initially network with the myriad of providers that you will suddenly need. CRSO's deep-rooted connections in the community means they know which providers are accustomed to working with patients with brain injuries. With limited energy, and easily confused thoughts, I immediately needed direction in finding a physical therapist who could address my injury as well as my vision issues.
The physical therapist suggested was fabulous. We worked together intensively for two years, and I still see him as needed. The treatment sessions at Community Rehab were incredibly helpful! I would always bring a list of questions and/or topics. It was there I would learn everything from memory strategies to adapted technology devices and techniques, review my medical status and recent medical appointments, my efforts to re-gain difficult skills, drive the car again, handle social situations, and pacing. Jan was always quick to assess whether I needed the migraine mood lighting in her office, an extra hug, or the box of tissue. Some days my brain was ready to really work, and others, no matter how hard I tried, it just wasn't happening. She understood more quickly than I this would happen, and taught me how to move on and over these bumps in the rehab process.
Coming to CRSO was my port in the storm of living with an initial brain injury. The receptionist, a survivor herself, could "read" my face to know how I was doing and cared. We visited easily about various challenges faced, and always found a place to find common humor. Even the waiting area was thankfully visually restful, unlike many other medical offices at that time.
I'll never forget the first time I walked the four blocks from my physical therapist's office to an appointment at CRSO. That measure of independence came with high anxiety and fierce determination. My heart pounded so loudly, I could hear it like a washing machine in my ears. My eyes stared at the sidewalk, riveted to the cracks so I wouldn't trip along the way.
At CRSO, I always felt I could really answer the question, "How are you doing?" without judgement. I never had to worry about what the listener heard, as they had heard it all before. I always knew there was a solution for every issue, and with their skills, I was going to see what it was before we were done talking.
Learning to convey to family and friends all the hard wiring changes which had transpired or were temporarily skewed was often tricky; sometime taking more than one explanation. Without obvious external injuries, I had no significant reminders. I sometimes wished for a flashing, "Brain Injury", neon light, when I was too tried for one more explanation about needing the TV turned down, the light is too bright, etc.
Each day I felt I had a "Brain Injury Account" with a maximum number of energy hours deposited for the day. It was my choice to determine how they were to be spent. If I "overspent", it meant physical consequences; a migraine, need for more sleep, tears, or a general meltdown. This is a concept Jan and I "developed", and it has served me well.
Our family had been a part of CRSO's Brain Injury Support Group previously with my daughter, and we returned again, for me. As before, it was a wonderful experience. The group brings together Survivors, Family Members, and caregivers, and is an essential outreach.
Jan typically facilitates this Group, making time for people to become acquainted socially, share experiences/resources, and tackle a topic of mutual interest. The openness, unconditional, and non judgmental caring within this group is amazing. One of the most helpful issues I had to wrestle with was finding a way to answer the question: How much are you back to yourself before the accident? I hated that question as it was so deficit based, and it was NOT the way I viewed life.
It forces a person to scan for all the things that are still wrong, grieve the losses, and then hope you are still feeling good about what's left. Often, it is a medical provider; they may ask for this response as a percentage. Again, NOT HELPFUL!
Other members of the Support Group also had similar experiences. Together, we explored the concept of, New Normal. Each of us has found our New Normal; accommodations we make on a daily basis, woven within our lifestyle.
I am blessed to have friends and a family who appreciate who I am, and what I can do. Now the pace of life that works for me, is done with planning, and isn't a choice. Travel, quilting, walking for exercise, reading volunteer work, socializing, are all still a part of my life. And I am grateful to the many hours of rehab support I received at CRSO, so I can continue to do what defines who I am.