Last Thursday, I filmed a Facebook Live talk about Affordable Health Care for All from the perspective of my personal experience. I recorded it with the guidance of my expert coach/consultant Jaimie Crumley on the day that the House was originally scheduled to vote on the new proposed Health Care bill. As you know, the vote was postponed to Friday and then withdrawn altogether after the Republican leadership determined that there was insufficient support for it to pass. The government leaders have decided to move on to other issues; meanwhile, we the people are still in need of quality health care that does not cause us to go broke.
There were close to 800 views on the two Facebook Live videos I did that evening. I am grateful to everyone who took the time to tune in and comment – thank you very much! If you haven’t yet had the chance to watch, I encourage you to take a few minutes and do so. The two posts are on both my Facebook pages – Still on the Journey and my personal page, dated March 23. Why did I film two videos last Thursday instead of only one, as was planned? That’s a great question, and its answer is the reason for the title of this post.
Many of you know that I’m a three-time cancer conqueror living abundantly with late-stage cancer for over 7 ½ years. That is a lot to digest, so I usually stop there when I’m telling my health story. But my cancer diagnoses are not my only medical challenge. I also live with two other medical conditions: Lymphedema and Transient Epileptic Amnesia, a form of epilepsy. Lymphedema is swelling of the arms or legs due to the removal of or damage to the lymph nodes, which can take place during breast cancer treatment. I will save my story of lymphedema for another blog post. The rest of this post focuses on my experience with Transient Epileptic Amnesia. My condition was evident at the end of my first Facebook live broadcast last Thursday, and it was the reason I filmed the second one.
About 12 minutes into the live taping, I suddenly stopped talking intelligibly, began making nonsensical sounds, and started laughing for no apparent reason. Then I stopped talking altogether and looked blankly into the camera for approximately another minute until Jaimie stopped the recording.
What was going on? I was having an ‘episode’ or ‘spell’ because of the Transient Epileptic Amnesia (TEA) that I was diagnosed with last July. TEA is a rare neurological condition detected by a test called an EEG. An EEG evaluates electrical activity and wave patterns in the brain through small flat disks attached to the head and to a computer, which records the results. In my case, the test showed abnormal activity in the temporal lobes of my brain, determined to be a form of epilepsy. One tends to associate epilepsy with convulsive seizures, but this is not always the case. For me, the seizures take place in the brain itself, and they manifest by briefly impairing my consciousness. They alter my ability to interact normally with my environment and include motionless staring, blinking, and unusual speech – all of which were evident in the spell I had last Thursday on Facebook. After I have a spell, I have no memory of it. I only know about it from the people around me who observe it while it’s happening.
It is ironic that I had a spell that day because I had seen my neurologist that very morning and celebrated three months of being spell-free. I’ve been on medication to control my brain activity and suppress the seizures since my diagnosis, and we thought the medication was doing its job. So, I was devastated to learn I'd had a spell that day, and furthermore, to have it be broadcast live for all the world to see. On my journey, it seems that just when I think I’m progressing, I take a few steps backward.
It is in that place, where we find ourselves taking one step forward to take three steps back, where faith, or acting as if, comes in.
After realizing I’d had an epileptic spell on camera, the first thing I did was to film a second post to finish the talk. In the second post, which was about 7 minutes long, I did not indicate that I’d had an epileptic episode; I simply said that something went awry but that I was okay. That was not the time to get into the level of detail I am sharing here. However, it was the time for me to act as if all was well, which is the essence of faith. And you know what? Everything was alright. I finished the task at hand and wrapped up my talk on Health Care. I discussed with a few people close to me whether I should remove the post where I’d had the spell. We decided to leave it up, because after all, my ministry, is about being “Still on the Journey.” If picking up and going on after having an epileptic spell on Facebook live doesn’t epitomize the journey of faith I am on, I don’t know what does!
There are many definitions of faith, but the one I choose to stand on comes from Hebrews 11:1. “Now faith is being sure of what we hope for and certain of what we do not see.” I don’t see my healing right now, but I’m certain of it. I hope every day for my healing and I’m sure of it, even when I feel bad, even when I have epileptic seizures, even as I sit in the doctor’s office getting my blood drawn or having a scan, even when I’m sick and tired of being sick and tired.
My friends, I choose to stand in faith even when I’m having the hardest time of my life. I choose to stand in faith even when I’m angry because I cannot drive and must depend on others to take me where I need to go. I choose to stand in faith when I’m crying out to God that I want my pre-cancer, pre-lymphedema, pre-epileptic body back – the body I came out of my mother’s womb with. I choose to stand in faith when all the voices around me are saying I should have no faith. I choose to stand in faith when all my eyes see is darkness, but my heart sees the light. I choose to stand and walk in faith when reason seems to be the more rational road to follow. When I have nothing left, I still have faith. No situation, no experience, no person can take my faith away from me. My faith is who I am. So, I’m going to keep on living my faith, by acting as if things are already as I want, believe, envision and know them to be. God is my witness, and so are you. I dare you to join me on this journey.
