By Christina Coates, HODA President
I knew it was coming. Oftentimes, I like to fool myself into believing that I have complete control over the storm between my ears that is sometimes calm and sometimes raging. I tell myself I’m OK. That I can handle it all. I don’t need to rest. It started weeks ago on my daily rehab walk throughout the residential streets of my neighborhood. The very same streets that I used to weave through on my early morning jogs before the discovery of my fourth ventricle cavernous malformation. My favorite route was through the neighborhoods because I could often jog through the sprinklers of my neighbor’s lawns to cool myself down a bit around mile five. I used to know these streets as if they were extensions of my body. Then I got lost.
This wasn’t the first time that I couldn’t remember where I was. The first time, it truly scared me. I quickly remembered the major landmarks (the train tracks are to the northeast of me, and the elementary school is to the west), and was able to get my bearings in less than sixty seconds. I felt embarrassed that I had a lapse in memory. My first inclination was to keep it to myself. Then I remembered that it is of the utmost importance that I tell my husband these things. I knew that this event would come into play at my next neurology appointment. This event led to me going on short term disability. We all knew it was coming. My husband, my daughters, my employer, my neurologist. We just didn’t know that it would happen so fast.
Health requires rest
Then came the panic attacks, the first of which felt like a heart attack. My chest felt like it was collapsing under the weight of an elephant. I gasped for air. I’d never felt anything like this before. I remembered how a coworker described her mother’s heart attack and called to make an appointment to see my primary care physician. My doctor told me there was really nothing that they could see to tell them what had happened, and asked me to see a cardiologist, to get a work up and make sure my heart was healthy.
The cardiologist dismissed my concern and acted as if he was personally offended by me being a silly woman and wasting his time. He looked at my paperwork. “I see you’ve had brain surgery.” I went to my favorite defense mechanism, and started to discuss my brain surgery in detail and the HOD aftermath. For whatever reason, the cardiologist relented a bit. “Well, I guess it wouldn’t do any harm to take a look. After all, you are at the age where we start to see heart disease develop.”
Mental health matters
The doctor listened to my heart and heard a bit of atrial fibrillation. He then ordered a stress test and an echocardiogram. As with everything else, it was discovered that I am healthy as a very healthy ox. It is just my brain that has problems. Armed with this information, I suggested to my primary care doctor that perhaps what I was experiencing was a panic attack. She prescribed me a rescue medication, and asked me to try it next time I started to feel an attack come on. I followed her directions, and the medication worked. Voila! It was anxiety all along.
One Tuesday, I found myself particularly stressed out during a department meeting at work. For some reason, this triggered the first attack. I quickly skirted off camera and took the rescue medication. I started 4×4 breathing to calm down. My internal thoughts turned to a soothing voice, telling me that this was just a panic attack, it would pass soon, and I needed to calm my heart down. Within five minutes, I was back on track. Until I was asked to join a meeting after the meeting with a smaller group to discuss strategies. That was when the second attack hit.
I turned off my camera and started to focus on my breathing. *PING* A message from another attendee came through, apologizing for offending me. She assumed that I had turned off my camera because of something that she said. I told her it wasn’t her, and that I didn’t want everyone to witness me in a panic attack. This was the day that we started talking about disability. I gave my employer 30 days to find someone to take over my work, and stepped away from work that I was very good at and I loved.
The attacks continued until my leave began. I would happily announce to my employer and to my neurologist that I hadn’t had a single panic attack since the leave started. That was true, until last weekend. I was out on a daily walk, on a familiar street when I felt my carotid artery tense up. My trusty Apple watch told me that my heart rate was off like a rocket, climbing far above my normal walking beats per minute. I started my breathing, checking my watch for improvement. Down 2 BPM, then up 5 BPM. I finally asked my husband to come and pick me up.
There was no meeting or stress in that walk. There was no reason for the attack. Or was there? The attack itself should have been enough warning to tell me that I needed a real break. I needed to back off. Do less for HODA. Rest more. Eat better. Read a book. Do something to reset. Instead, I chose to continue on. “I can beat it this time, like I did before!” In reality, I couldn’t outrun the breakdown. It was already in motion.
Boundaries are critical
My first birthday after brain surgery was the first time I had experienced true social anxiety overload. My brother, who hadn’t spoken to me since before the surgery (7 months prior) decided that now was the time to speak with me. He left multiple voicemails and started texting my phone relentlessly. Thankfully, my sister spoke with him to ask him to please stop. Although I appreciated the warm wishes, I was not ready to have a discussion with him. My feelings were very hurt by his lack of concern for me, and I didn’t want to hash that out. I also didn’t want to have a disingenuous discussion and pretend nothing had happened and relieve him of whatever he was feeling, only to increase the weight it had upon me. What he was accomplishing was sending me into panic and complete over stimulation.
My dearest sister calmly explained what his contact attempts were doing to me. As if by miracle, the constantly ringing and pinging of my phone stopped. In turn, the panic stopped. The comfortable silence had returned. I don’t believe that he understood anything about what had happened, and I didn’t feel the need to educate him.
We have to listen to our bodies demands for rest
I have been working every day on a few new and important initiatives for HODA. The work seemed innocuous, but required a lot of social interaction with the community, and tedious detailed design building to create aesthetically pleasing and factual educational materials. In the meantime, I was also very involved socially with several fellow patients, guesting on podcasts, attending webinars, actively recruiting volunteers and new board members. You could say that I was working full time for HODA and disregarding my own needs, which is quite hypocritical of me! I am always advising anyone who will listen to slow down, take time for you, breathe, de-stress. Meanwhile, I am totally disregarding the signs that I am overdoing it.
We had our first virtual meet up for HODA on Saturday. It was absolutely worth the complete drain it had on my energy. I was totally over-stimulated, and I was already in the danger zone of fatigue. I thought that I would just chill out on the sofa for the remainder of the day. Instead, I furiously posted all over social media, and incessantly checked my feeds to see member’s comments and pictures. It was exhilarating to see all of the beautiful pictures and read all of the nice comments. It was also draining me. With Rare Disease Day quickly approaching, I had an interview and a podcast published within a 24 hour period. I was far more active than I should have been. And then started the direct messages. I was getting drowned in messages and critiques and photos and everything under the sun. Please don’t misunderstand me, I appreciate all of these things. I was also terribly overwhelmed. I was overloaded and it was the perfect storm.
I’m grateful for my small but effective support crew who all immediately recognized what was happening and held me gently in their hands and helped me to see reason. I committed to a 24 hour hiatus from work and from social media to regroup. My sister, my husband, and my best friend. All these people have their own private issues spiraling around them. And each took the time to hear me speak and help me see what was happening. I forget often that I am also in the HOD community, and I need to take care of myself too. In my quest for others to be seen, heard, and honored, I often forget that I need rest and time to myself to regroup and reset.
I encourage you all to listen to your own words of advice. Listen to your body and rest. People always say that if you don’t pick a day to rest, your body will do it for you. So, here I am resting. Whether I want to or not. I’m resting on this Rare Disease Day. How about you?
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