KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
It was the summer of 1979. I was 23. Young, naïve, adventurous, single. I was living in a small town (population 1000!) in Central Massachusetts. I had just broken up with my boyfriend of two years, who knew everyone in town. But, I was getting to know people where I worked. August 5th. I had called my parents that morning and was told that “Edward (my brother) didn’t come home last night” and they wanted to keep the phone line clear. Fine. He’d fallen asleep at friend’s houses before. Not a big deal. It was a glorious day. I went canoeing.
Then I got the phone call. “They found Edward’s body. He’s been shot”. That sentence and all of the stuff that followed changed my life forever. I am reeling a bit, now, 32 years later, just having typed that sentence. I called my boss, she and her husband gave me a ride to Boston, where I caught a flight to Virginia, where my parents lived. I don’t remember a lot of that visit, crying, the police visiting, feeling very alone. My parents are not the most emotional people and I was extremely emotional. They retreated. I cried.
I returned to Central Massachusetts. All of my new found friends had returned to the big city. I was alone, in a town of 1000 people, all of whom knew, and allied themselves with, my ex-boyfriend. No one was calling me. I had friends who wrote, but it seemed like they never wrote enough. One friend wrote me almost every day that year. She and four other people who I did not know well previously, saved my life that winter. It was a long year.
Then I got a chance to go back to Ann Arbor! Home! Where my friends are! I was so excited! I was going back to graduate school too! In public health! Yay! I packed up my little yellow Toyota Celica (records placed in the middle of the trunk to balance the weight) and drove to Ann Arbor. I was living in a cooperative house with my best friend and her parents. All was good! I still cried every day for my brother. Missing him terribly. Feeling like, maybe, I should have been able to do something. Or at least be there.
Then, in September, I was in Pathology class (a required class for my major) and the professor was talking about death-cellular, organ, system, whole body….and I started feeling like I was going to black out. Very light headed, dizzy, a bit nauseous. What the heck is going on with my body? I survived that episode. But it started happening more frequently. First, when I was in class and felt “trapped”. Then when I was in crowds. Then when I was driving through tunnels (of which there were several on my way to visit my parents). Then when I was on bridges. Then in airplanes. What is this? I was getting more and more claustrophobic and agoraphobic.
A friend suggested I go to a psychiatrist. I did. He prescribed me Ativan, a new drug at the time. The prescription was for 10 pills. Ten! I was having these attacks several times a day and he gave me 10 because they thought at that time that Ativan was highly addictive. He also suggested I go into psychotherapy. An hour a day, five days a week for years. No, thanks.
I discovered that, if I wasn’t driving, chlorampheramine, which I didn't take often because it made me sleepy, would sometimes take the edge off enough to keep me from having a full blown attack. I went to see psychiatrists, psychologists, social workers. No one helped very much.
I moved to Cleveland, met my (now ex) husband. After five years, I finally stopped crying every day. We got married, had two sons (my eldest’s middle name is Edward). I finally felt like maybe I was past this. But I still had the phobias. Still had the anxiety attacks.
I read a lot about loss during this time. The one sentence that stuck out to me, as so much exactly how I felt was from C.S. Lewis. “Why does grief feel so much like fear?” It does! It does! It is fear that I was feeling. Fear of loss, fear of ….what, exactly? For me, it was loss on many levels. Loss of my brother, of course, but more than that. Loss of innocence. He was murdered, randomly. For what? Money, a car. That’s about it.
One therapist I went to suggested I go to a group therapy session. I went, once. During the session, we were taking about grief. And the blackness opened up again. A black hole. That I am falling into. There is no bottom. But everything is getting black. I didn’t pass out, but felt like I might. I hate that feeling. I never went back.
About 20 years after my brother was killed, I finally saw a psychiatrist who said “You know, I think you are depressed”. Really. My brother was murdered and I am having anxiety attacks and I am depressed. Ya think!? She put me on antidepressants which made a huge difference. Tried to unlearn some bad behaviors (I always mapped out alternative routes to avoid bridges or tunnels that I knew were there, tried to challenge myself).
In hindsight, I had PTSD and clinical depression. I can tell you all of the reasons why that happened to me, but not my sister (who, instead, attempted suicide on several occasions), or to others. It doesn’t matter. It happens, sometimes. It comes out of nowhere and takes over your life.
I still tell people that if anything were to happen to my sons, either kill me or lock me away because that is a loss I couldn’t cope with. And I mean it. Even the thought of it sends me into an emotional tail spin. And I’m a worrier. I worry about everything.
One thing I have discovered is a lot of people have suffered some loss. No one talks much about it. I had a friend who had a sibling murdered and a sibling commit suicide. Which is easier to deal with, I asked? The suicide. The murder is more random and unexpected. Wow.
When people talk about “getting over” a loss, or “recovering” from a loss, what can I say? You don’t ever get over it. It changes you forever. But it doesn’t have to cripple you. Thanks to modern medicine, you can get help (and, more importantly, recognition!) for the acute effects.
WOW! Rec List, I am honored. I hope if this diary reaches just one other person, it has been worth it.