Barbara asks: Was music therapy involved in your recovery process, Jason? If so, when did the therapy begin?
Carol: I strongly believe that the importance of music — and not just any music — in Jason's return to the world was of enormous significance. Music is a "language," as are our spoken English words. We know that Jason was mentally processing music during the time that he appeared to be non-responsive to other forms of "language." Apparently music is capable of stimulating pleasure chemicals in the brain, and of course Jason, being a musician himself, was used to seeking the "highs" that people who enjoy music know so well. Our initial goal was to stimulate his brain (how often do you hear about the brain: "use it or lose it"), and music seems to have succeeded nicely in doing that, and perhaps opened doors to receiving verbal communication. Although after Jason left Spaulding I suggested to the folks there that a music therapist on the staff would be a good thing, I also have some reservations. It probably wouldn't be possible for a therapist to choose music as carefully as we did, and be on hand to share it many times during the day and into the evening.
Jason: I feel like my family was really good about exposing me to as much music as possible while I was an inpatient. Of course, I say this based on what I've been told — I don't have any clear memories of my time as an inpatient. I know, for example, that certain friends of mine sang to me or would bring mix CDs in for me. My family was very selective about the music that was played in my various rooms. Later, when I was deemed well enough to go on short visits to nearby locations outside the hospital, my family took me to some concerts. I went to hear Ralph Stanley, which made such an impression that I have a dim memory of it even now.
Marjorie: In addition to our playing some of Jason's favorite music for him every day, I also brought in a pocket metronome and would play it for 5 to 20 minutes while Jason was sleeping. The hospital environment is pretty banal and formless. Sonically, there's not much to grab onto. A patient is not exposed to the music and rhythm of the outside world (birds chirping, children's shouts and laughter, footsteps of a person climbing a flight of stairs, even car alarms and the song on the ice cream truck). A metronome seemed to me a good way to artificially provide part of a stimulus that Jason wasn't getting.
Chris asks: Did religion and faith play a role in Jason's recovery?
Monica: From the first moment of this journey, I turned to my own form of prayer. I spoke to God pretty constantly, asking for strength and guidance for myself and for everyone. I think this helped me stay focused when I most needed to stay strong — when there was a surgery coming up or some other really difficult event. Then there were times when I felt so lost that I didn't know how to pray. This is when I would call friends to help me formulate my prayers. Carol was also great source of spiritual strength and provided many great insights that she had learned in her studies of Buddhism.
I also visualized Jason healthy as much as I could. And I would ask Jason to visualize himself up and about, playing the guitar. I would ask him to keep trying to bring that image in his mind closer and closer to his body.
Lynn: If you define faith as the sheer conviction that there will be a certain outcome, then faith certainly played a big part in Jason's recovery.
Carol: I also found that when anxiety interfered with my ability to meditate and focus purposely, I turned to others for help. One notable experience was when Jason ran a high fever for a long time — too long — and exploratory surgery was in the works. I called a Buddhist friend and said that I needed help. As luck would have it, she had a Buddhist spiritual leader as a houseguest, and they told me to come right over. The lama gave me something to do — that Jason's friends and I should make acts of kindness for animals. I relayed this to the family, and we sent out dozens of emails to friends, who immediately went to work going out of their way to be kind to animals. For instance, some feral cats were adopted, and a lot of animals got hugs and treats that they hardly expected. Soon thereafter Jason came through surgery just fine, and the fever subsided. The point isn't whether or not there was a direct connection, but rather that faith and belief, in the face of dire circumstances, need action and connections. It's important to reach out for help.
Marjorie: I prayed every day, often several times a day, for God to help Jason. I have heard the phrase "turn your troubles over to God"; there were days I not only turned my troubles over, I hurled them. I prayed for the strength to do everything I could to help Jason and for the acceptance that ultimately whatever happened was beyond our control. I tried to take the situation one day at a time.
Jill asks: What originally inspired you to play the guitar?
Jason: I grew up in a musical household. Both my parents are musicians. My dad worked for years as the musical director at the Goodspeed Opera House in East Haddam, CT, and my mom would play the cello in the pit orchestra there. My childhood summers were spent watching and listening over and over again to various musical revivals. When I got to high school, I started playing the drums. I was in a couple of bands, which was fun — but I would always look over at the guitar player and be sort of envious. Playing the guitar just looked like a lot of fun — plus as the guitar player you got to walk around on the stage while you played! I switched to playing the guitar and quickly became obsessed with it.
Leah asks: What did you find most helpful to hear from your doctors? What do you wish they had or hadn't told you at the time? And do you have any advice for medical practitioners in terms of how to approach discussions with patients and their families?
Monica: As a family, one thing we did not allow was for any medical staff to talk about Jason as if he wasn't there. One time a nurse asked us, "What did Jason used to do?" Talking about a patient as if they are not there, and talking about them in the past tense was absolutely out of the question. We had that nurse removed within minutes.
Lynn: Honesty from the doctors was much appreciated, but the mindset of giving the worst case scenario was not helpful. While we had a number of doctors who were extremely supportive and encouraging, we also experienced some who seemed to give the most dire prognosis as a sort of rote response. This seems to be the difficult balancing act for both families and doctors. A family doesn't want to be naive, but also doesn't want to give up hope. A doctor wants to be honest, but wants to be supportive as well. I think laying out all possibilities in a prognosis is the best. That way the family can hope for a favorable outcome and deal with the less favorable when they have to.
Marjorie: Spaulding Rehabilitation Hospital offers a class on the brain and brain injury to family members of new patients. The class was incredibly helpful — not only in understanding the nature of the injury, but also in communicating effectively with doctors and thinking creatively about rehabilitation.
Carol: As they are able, physicians should make themselves available and visible during crises. One neurosurgeon, for example, gave us his cell phone number, called us, and was often in the ICU with nurses and checking on Jason. If there was no news and we passed him in the hall, he would say, "Have faith," providing a much needed connection. We didn't have to wait for daily (or in one case, weekly) rounds to ask important questions.
Scott asks: Is there one thing that stands out as the most valuable tool, brain exercise, dietary change or alternative therapy which helped the most towards your recovery?
Monica: Once Jason had been home for some time, he started a vigorous course of acupuncture. I swear this put im on a while new level of recovery in all aspects of his well being.
Lynn: In addition to a regimen of exercises that covered most of Jason's physical needs, he started swimming therapy and continues swimming as much as he can to this day.
Marjorie: Love, in all of its various manifestations, was key.
John asks: Jason, were there times when you felt your family was not being understanding of your situation? Did you get frustrated once you started realizing your limitations? What was the main thing that helped you push through your frustrations?
Jason: I have had feelings throughout my recovery of feeling alone. It's weird to say that, because I have been surrounded by my family all along. But there's something inherently isolating about recovery from a brain injury. There's so much that no one can tell you, because it's different for everyone. There's so much that's just unknown. So I would feel frustrated, at times — and I would feel like I couldn't really express these feelings of loneliness to my family. At the same time, I knew how well intentioned they were. So that would cause me some anguish.
It's also extremely frustrating to be thirty-five years old and to be taken care of so much. I couldn't go anywhere by myself for the longest time. In fact, the first thing I was "allowed" to do on my own was to go to the corner store in the morning and buy the paper. I was so thrilled to finally be on my own, even if it was just for one city block. Much later I was told that my dad actually followed me to the store and back! Looking back on it now, I think it's kind of cool that he did that.
I think when I first came home, I was not aware enough to feel true frustration at my limitations. My mind was operating only in the present moment — I didn't have much ability to retain information for very long. So I just didn't think to get frustrated at that time — I just went from thing to thing — exercises, eat, nap, therapy, eat, nap, doctor, eat, tv, bed. I had no sense of the big picture of the whole thing. Later, when I recovered more awareness, I would get very frustrated at my limitations. My issues with fatigue drove me crazy — they still do! The fact that I often had to just stop what I was doing to go lie down and take a nap was a real drag to me. My issues with my eyes — the strabismus, double images — made it so that I couldn't drive for a long time. So I always needed to be taken places by someone. That kind of dependency really drove me crazy.
Getting through the frustration — there were always different approaches to dealing with it. Always at the end of the day I would come back to realizing that I was surrounded by a lot of people who really cared about me. I would try just getting out of my head, switching gears, doing something else, putting on some music, calling a friend — anything to not dwell on the frustration. Because deep down I always believed, and I still do, that any limitation I have is temporary. Some of the darkest moments for me were when I would have little "fear attacks" — when I would all of a sudden freak out and think "what if I can't recover anymore? What if this is the best I can do?" And then inevitably it would change; I would get determined again — it's something about how I'm wired. So the real answer to this part of your question is that I think there was something in me that refused to let any frustration I was feeling impede my recovery. If I felt frustrated, I had to let it go after a certain amount of time, because it was ultimately unproductive.
And humor. My family and I can be pretty insanely ridiculous when it's just us around. I can't explain it, because it won't make any sense. Just trust that it's true. Humor was, and is, a huge salvation!