Recovering

For every action, there is an equal and opposite reaction.

The value of my education about how to live with C-PTSD is inversely proportionate to the suffering of my cluster of seizures that I endured this past Sunday. Monday is a blur; it was a day of shock and recovery but yesterday morning, due to my inability to go outside unescorted, a company called Nurse Next Door came to pick me up and take me to Dr. Shoja, stayed with me at the hospital and brought me home.

My visit with Dr. Shoja was nothing short of miraculous. I felt some benefit within thirty minutes of my arrival and now, after the balance of the day at rest and a great night’s sleep, I feel dramatically improved.

When I related to her the drama of the ambulance rescue and readmission to St. Paul’s she asked me, “Do you have any idea of what caused it?”

“You’re the doctor. You tell me.”

“How did you feel about the last visit?”

“I know you want to talk about that but I don’t.” I was crying and able to only speak one word at a time and only very softly. And I could hardly breathe.

“I want you to help me. I can’t live like this. I can’t go outside, or I’ll have endless seizures and someone will call 911 and I won’t be able to get the paramedics to leave me alone.”

“I think the cure lies in understanding the cause and I suspect it was our last session that predisposed you to the seizure cluster. That’s why I asked you how you felt about our last session.”

Our last session had ended with me telling her that I wanted to bake her some Persian cookies and she rejected my offer. She suggested that the rejection of a person in whom I was confiding my all, in a person on whom I depended, was too much for my psyche. It made sense.

We next discussed the nature of a “for pay” relationship and, specifically, the psychiatrist/patient relationship. As I said: I have learned a lot about managing life with C-PTSD. I feel like a child — a child who is eager to learn how to live and full of questions and Dr. Shoja is in a mother-figurey position.

Today feels like a new beginning. That would make this morning the eighth or ninth morning I’ve felt this way. It’s how I feel after every setback on my route to recovery. But the seizure cluster was the nadir of my C-PTSD life and so, conversely, this past session with Dr. Shoja was the most insightful and fulfilling session yet.

o

   

I know a few friends read this blog; some strangers may even read it. At least one friend finds my writing here uncomfortably revealing. But  — and please excuse me for saying this — I don’t write here for you. I write for me.

I write here to fulfill a need. That’s how it’s always been. It’s more convenient to work here than in a paper diary as I used to do. And now, since the onset of my condition, writing about what happens to me is a vital part of my recovery.

I have ongoing professional medical, psychiatric and physical therapy. This is my self-help zone.

C-PTSD Diary: Parsing Anxiety

Sunday started to perfectly and then … disaster.

The day broke to a cloudless sky so I decided to walk through the park and over the bridge to the Simon’s store in Park Royal; it meant a nice four-hour walk, there and back. I was out the door at 10:30 am.

However, only 20 minutes into my walk I fell and hurt by elbow and split a finger open. To keep the blood off my clothes, I headed for a nearby pharmacy for some badages when my friend Doug saw me. He took me to his house to clean and bandage my cuts and then we got to chatting on his balcony where he served us a delicious lunch.

It was wonderful. I felt part of a community given the serendipitous nature of it all. And then I said goodbye and set to continue my walk — but not to Park Royal. The fall had shaken me up so I decided to just meander in the city on quiet sunny streets.

Walking in the sunshine was heavenly — particularly watching the dogs play in the dog pool near my place and talking with their owners.

I want to remember yesterday forever. It was a perfect day and I wanted to use its memory as an antidote to my episodic escape fantasies. The seawall is an unparalleled resource for a walker like me as is my intimate knowledge of this city.

After about an hour of walking near the water I saw a bench that looked perfect for a rest. It was shaded in dappled sunlight. I sat down and almost immediately slipped into a mild seizure. As I sat through it, I wondered whether it was due to the fall I’d had.

Once it was past, I set off again and walked happily for another hour and then I saw another bench that looked ideal for a rest. Perhaps after only enjoying the shade for a minute, I had another seizure. This one was like the earlier one; they were mild.

I felt it was a man’s loud music nearby that triggered me. He was playing loud angry banger music, the opiate of the disenfranchised. Seizure #2 passed as all my seizures do, fairly quickly, but it was odd to have two seizures so close together on a day when I felt so happy.

Clearly, it was time to go home and take my medications. I headed for home but I’d only gotten about a block along the seawall when I was overcome with yet another seizure (#3) and when it was over I wondered how I was going to get home. I was now in such a heightened state, I sensed I was in real trouble.

So I called Dwight believing having a conversation with him could ground me. He talked me down and when I said I felt better, he suggested that I try walking home whilst talking with him and that seemed like an excellent idea.

I got perhaps ten meters when I felt seizure #4 coming on. This one was a doozie — a full on mightily convulsive thrasher, by far the worst seizure I have ever had. I remember dropping the phone.

An emergency physician was on me in seconds, pinning my arms down and putting padding around my head. I could not open my eyes; the light hurt. And soon two ambulances arrived, sirens blaring, and their many EMTs.

My speech was shite. I could only say the odd word, but Dwight called me on my phone and the Emergency doctor got a lot of information from him. I did everything in my power to dissuade the paramedics. I just wanted to go home but I knew it would mean crawling on my hands and knees. I felt totally fucked, so off we went to St. Paul’s emergency ward.

At about 5:15 the seizing stopped. The fourth seizure had lasted two hours. I was soaking wet with sweat and exhausted but my condo was right across the street. Home felt so close.

The charming doctor asked me what caused me to fall earlier in the morning. I said I was clumsy. We talked about my seizures and he asked me how often I had days like the one I was having and I told him it was my first so he said he wanted to do an ECG.

Ten minutes later, he told me he believes I may have fallen because of a problem revealed in my ECG. From my records he knows that the cardiac condition was present on April 9^th when I was admitted at the onset of my PTSD crisis, but it was not present in previous testing. (I had a heart attack around 1990 so there is lots of cardiac history in my medical records.)

This week I’m going to my GP whose been sent a note from the hospital about a valve in my heart. He will guide my follow-up on that score. Tomorrow I see Dr. Shoja at 10:00 am, and thank God for that. My confidence in my ability to cope with life has been badly damaged. Her insight and guidance will be a welcome salve.

Ruben James

After Steve, my ex, left me we sold our house. He moved in with a friend and I bought myself a townhome where I met Crystal. She and I moved into Brewery Creek on the same day. She’d been dumped by an ex who’d been having an affair with Crystal’s best friend. We were both aching.

Soon, however, she met Steve and I officiated at their wedding. Her best friend sang at the wedding; we were both fabulously reconciled with our exes. Next, Cole was born and then twins Ruby and Georgia. I became an active baby sitter and Uncle Chris.

As soon as the twins could talk in sentence if you referred to Ruby as a girl, she said she was a boy. Whenever it was time for party clothes, Georgia was always an orgy of pink and glitter; Ruby was never without pants and a tie.

A vivid memory was a party at the home of a great aunt of the girls. I went separately and arrived just after the family. The hosts had a rich resource of toys and sports equipment for their grandchild so Ruby and Georgia dove in on arrival and when I arrived I found Georgia dressed as a princess in pink. I found Ruby, tie on the ground, alone in the driveway playing tennis with the garage door.

They looked identical but were so different. It was easy to tell them apart by their behavior but impossible by their looks. I worshipped their mother who allowed them to make their own choices. She encouraged all her children to be individuals.

I don’t see them as much now that she lives way off the bus route in West Vancouver and I’ve been without a car. Also, my seizures and stuttering have made children my most challenging audience; their presence makes me particularly embarrassed by my affliction.

But yesterday I wrote to the family saying it was time to get together and so we are choosing a date.

But in her reply, she blessed me with the revelation that Ruby Jean had come out as transgender and in two days she begins high school as Ruben James. I can hardly wait to get my arms around her.

I’m as proud of her mother as I am of our James. The language she used to tell me reveals such compassionate acceptance. I weep every time I read it.

I have friends who’ve achieved great heights in their careers who are justly proud of their achievements. Crystal’s mothering puts her on par with them; I am a proud witness to her legacy.

Cherry bark is so beautiful. Saw this on the way to
the PNE in Vancouver's East End.

This Pampas Grass was darker than most I see. Loved it.

Bacon. It's heartbreaking to know.
They've the intelligence of border collies.
♥ 

Twin grandeur!

YAY! A New Chris Guest Movie

The king of documentaries has another coming out called Mascots. I think it looks hilarious. (Mind you, I thought Best in Show looked hilarious and it wasn't. Whereas Waiting for Huffman is uproaringly funny and one of my all time favourite movies.) It's opening soon.

WORLD'S BIGGEST A**HOLE (He's NOT what you think!)

Why do you need to do that?

Yesterday I saw both of my therapists and came home wanting to quit going to both of them. Why? I invited my massage therapist, Christopher, out for dinner to celebrate his birthday in October. He accepted but now, after seeing Dr. Shoja, I realize that I was wrong to ask him.

After seeing him I went to Dr. Shoja and at the end of my appointment I told her I’d researched Persian cookies to bake her and she said: “Why do you need to do that?”

Her comment made me mad. I felt rejected and it hurt. So why did I want to bake her cookies and why did I want to take Christopher out to dinner?

Last week I did too much. I saw someone every day, went to the PNE twice and to an alumni reunion and a dinner party. By Sunday night, I was barely able to speak and I’d had several seizures so I spent Monday to Wednesday morning longing for my therapists.

These are my first for-pay relationships. They are terribly one-sided and both bring me tremendous relief from the stresses of living with PTSD. I thought I wanted to take Christopher for dinner and to give Dr. Shoja cookies to thank them.

But her question has me suspecting a more pathological motivation: To be liked. Worse — well more honestly: To be loved.

It doesn’t surprise me that an orphan seconded to neglectful custodians would be thusly afflicted. I will not hate myself for being this way; instead, I welcome the insight derived from Dr. Shoja’s response.

I won’t bake any Persian cookies. I’ll take Christopher to dinner, or not, but I will stop trying to become his friend.

•

I not only went to bed angry last night, I was also exhausted after three days of severe symptoms and two therapy sessions. Plus, at the alumni party I attended, I’d had a rather severe seizure as I was preparing to leave and it got me into a situation that greatly added to my stress. 

I’m in an altered state during a seizure and for a while afterwards. I can’t speak conversationally; I can only say single words and so I blurted out the word “seizure” to indicate to those around me that I knew what was happening and that it would soon stop.

But for the third time in five months, one of the people coming to my aid was a medical professional and out of concern for my safety they intervene in a way that feels to me like a violation of my rights. They want to call 911 and I have tremendous difficulty stopping them from calling. I have found it very challenging to reassure them and retain the right to make my own decisions.

Don rejected the term “seizure” and I felt stupid in front of everyone. Consequently I went to Dr. Shoja yesterday keen to know what to call my episodes. I told her that I wanted a name for them that medical professionals would recognize and respect. She said they are non-epileptic seizures. Now I know.

She also said that although C-PTSD is an anxiety disorder, my seizures are not panic attacks. It’s a distinction I valued hearing. Information is my best medicine.

Sometimes the best medicine comes in the form of a question: “Why do you need to do that?”