Recently I was talking with a guy from a site who was demonstrating behaviors that looked as if he would be emotionally abusive if I were to begin a relationship with him, this was only after 3 days of talking to this guy. As I was telling him that I no longer wished to speak with him, my father called but I was in the middle of a text message so I ignored it. When I was finished I called him back to see what he needed (most of the time my dad pocket dials a lot...not entirely sure how he does it on an iPhone but thats besides the point).
He asked me how my day went and then began to say "I have some bad news to tell you." Of course I immediately thought one of my dogs had gotten out and was dead. This was almost as, if not more worse.
The first experience with death of a close loved one was when I was in the 5th grade and my grandfather lost his battle with cancer. This was before my diagnosis of Asperger's so I didn't cry as much hearing the news as my younger siblings did. I did cry at the funeral, but not very long. When I was younger, our dog Murphy had gotten out and was killed by the neighbor kid speeding down the street to get to school, I cried for days after that and got over it relatively quick when we fostered liters of puppies that summer.
What my dad said stunned me beyond belief, having taken psychology courses I of course recognized the shock and felt the sympathetic nervous system kick in with pins and needles. My uncle had suddenly lost his battle to cancer. I kept saying "You're kidding me right" and he went on to explain to me that he had heard from my other uncle (I have a large Catholic family) had called him earlier.
One of my biggest struggles is trying to figure out how I truly feel. There is such a broad range of ways to feel and most of the time I'm pretty neutral, I might say I feel happy, but in reality I'm not really feeling anything but just neutral. Shortly after my father told me my uncle had passed so many neurons were firing that I could not figure out what I was feeling, if what I was feeling was a valid emotion (as it had been so long since I had experienced a close death), and what to do about it. I cried briefly and hung up the phone to resume cooking my dinner. I went to my room and the reality sunk in further, my uncle, the one who would enter the room and say "Who's ready to let me love on them" was no longer alive.
Earlier that day I had finished making a visual aid for clients using the characters from Pixar's film Inside Out and had several different emotions that could be related to each face. I tried to sort out how I was feeling but was unsuccessful. I went for a jog, called my sister and my best friend to try and talk through these feelings. I still couldn't label what I was feeling or why I was feeling that way.
I suppose a lucky thing about having therapists as friends is that they will help you process as best they can but still be your friend in the end of things. In my emotional overload I said several things to my friend that I immediately regretted after hanging up knowing that because of the state I was in I had no filter. This increased the activity in my amygdala, I could feel the neurons in my limbic system firing and I wanted it to stop. I started crying uncontrollably until I fell asleep.
If you've ever cried yourself to sleep, you know that it is not a pleasant sleep cycle because you are mostly in a-wave sleep having dreams about the things you're upset about and waking up from it is never pleasant. This held true for me. When I woke up I realized again, my loving, sweet, caring uncle was gone and started crying again. I went back to my visual board to pick out emotions that I was feeling in that moment.
Sad: Obviously I was sad because I was crying, but besides the fact that I had lost my uncle I felt sad for my aunt, my three young cousins who would now grow up without their father, my dad, my other uncles and aunts, my other cousins, and my grandparents. No parent should ever have to bury their child.
Upset: I was upset at the situation and myself. I know that I normally do not feel many emotions at all and for me to be feeling so many at one time made me feel very uncomfortable because I couldn't process anything.
Afraid: I was surprised when I had picked this one but looking back I can see why. While every family has different viewpoints they are still family. I felt afraid because I was concerned that I would not be able to see my young cousins again at family vacations. I hope that even though their dad is gone, their mother will not exclude them from being part of family gatherings. They bring me such joy and inspiration. I swear they have more musical talent than I did at that age, the oldest has and can play every recorder made and has such an incredible ear for music it enlightens me.
Confused: I was confused by all the emotions going on and not being able to process them at the same time. I felt overstimulated and out of control because I did not know what was going on and what I could do about it (when in reality there wasn't a whole lot I could do about it). I was also confused that my dad (who is also on the spectrum) wasn't feeling as many emotions as I was.
Frustrated: In times of crisis I want to do things to help. I am more productive and focused on what is happening so obviously I felt frustrated that there was nothing I could do for my uncles family. I was frustrated that people kept telling me "Theres nothing you can do but give them space and pray." I was reading an article in Psychology Today and a quote resounded with me rather strongly "It was logical to me to be as armed as possible with information so I could help." However in this situation not even my tools as a music therapist would be able to help because I knew that no one would want it.
Angry: I also felt angry at the situation and the fact that I didn't reach out to my uncle more often, obviously he and his family know that I love them and care about them but I didn't make the effort to tell him that more frequently. It makes me realize that you need to tell the people that you love that you love them every day because the next day they may not be here. I felt angry that God would give a man so spiritual and loving such a terrible disease and then take him away from a family who loves him. I felt angry that there is not more research going on about cancer, then I felt angry about the lack of funding for music therapy services which, can be so beneficial to those going through emotional pain.
Sick: Because I was crying so much and so upset I was feeling sick to my stomach and hardly ate anything.
For me emotions are like a light switch on a switchboard they are either on or off. When they are turned on it is very obvious. This is both advantageous and detrimental at times. For example, one time I had to perform CPR on a man and I was able to remain calm and keep the mans heart beating through chest compressions and he came to. There was a task to be done and I had the skills to complete it. When I am overcome by emotion I turn in to Captain Kirk and have explosions of that emotion in spurts, sort of like a child playing with the light dimmer. Yet at other times my calmness can be deceptive because I am really experiencing an emotional overload and like a pot of water on the stove its bound to overflow and come out all at once.
To make things more complicated I not only have to try and figure out what I'm feeling but also try and respect the space of others in my family. Even though I've gotten better at empathy, it is still a major area of struggle for me. For example, I want to make a slide show of pictures of my uncle and put it to a cover of a hymn or original melody (a technique sometimes used in hospice music therapy). However I was told to not email my family members requesting for picture for at least another week. I don't understand why it would be inappropriate to request pictures so that I can move forward in my bereavement process, but apparently it would be.
This is event is still very fresh and it will undoubtedly take sometime before I accept the fact my uncle is gone. However I don't think there is any "to do list" on how to grieve or process the death of a loved one for neurotypical or those on the spectrum because each person goes through it differently and finds what works to help them cope. I do think though that it is more challenging for those on the spectrum to be able to tag and process the emotions they are feeling because there are so many. This could make it much harder for someone with ASD to go through the "stages of grief" thus increasing the amount of time it takes to get over the death of a loved one.
John 14:1-4
