Revive & Thrive and Aftermath

Wow! What a busy time it has been!

Today’s blog will be in two parts, covering the recent Revive & Thrive conference in Colchester, and my personal health aftermath.

Part One – Revive & Thrive (Thursday)

When Karen Taylor, of ColchesterSoup began her amazing journey of bringing Revive & Thrive to Colchester, Matthew and Alex and I were among several people who helped show the visitors around our town. It was a great experience, much enjoyed by all of us. In addition I wrote a letter of support to bring Revive & Thrive to town. So as you can surely tell, I am proud to say that my family played a small part in this great event from the beginning (like many others!).

Thus it seemed only natural that we would help out when it came time for the big event. I was on meet & greet duties at the Mercury Theatre, passing out name badges, getting people signed in and orientated to the building. Matthew and Alex were on “sheepdog duties” on the two guided tours of Colchester, there to ensure that no visitors got lost along the way. They went on Thursday’s walk with Sir Bob and Friday’s walk with Dorian Kelly. What a fantastic and unique education Alex is getting! On Thursday, Sir Bob asked Alex what school he attended. When Alex replied that he is home educated, Sir Bob said, “Oh, so this is your school today!” And that is spot on.

My duties were quite fun – it was great saying hello to everyone who came in! It was a bit manic at times, when it seemed everyone arrived at once, but Jessica (Karen’s daughter) and I got through it. After about 2:30 everyone had arrived and had settled into the conference. If I had had more strength, I would have happily stayed for the rest of the day, but I was exhausted. I was unable to do the job in my wheelchair so had been on my feet that whole time, and I simply couldn’t do any more.

Matthew, Alex and I headed home, all rather jubilant for having had a really great day, and all feeling proud and pleased with the town we love so much.

Part 2 – The Aftermath (Friday)

For me, most activities come with a price. It’s part of my disability. I have an active AVM that is shaving years off of my life with each attack, and I have to spend a great deal of time resting in order to do any physical activity. Thankfully I can work from bed on my laptop and phone, and I manage to get quite a bit done despite being largely bedridden much of the time. However there are days like Thursday when I am busy and physically active, and usually, there is a price to pay for that. The price on this particular occasion was particularly high, but I still maintain that it was worth it. As much as I have truly been through a living hell since the early hours of Friday morning, I wouldn’t go back in time and stay at home on Thursday. I really loved being a part of Revive & Thrive. I was scheduled to be there Friday as well, but on Thursday night I felt the storm coming on, and as I fell into a fitful sleep, Matthew contacted Karen and told her that I wouldn’t be able to make it.

I woke up yesterday (Friday) late morning, in a true living hell. Matthew and Alex were already out of the house when I woke, on sheepdog duties with Dorian Kelly’s guided tour. As soon as I was able to use the phone I sent Matthew a text and asked him to come home. I had a raging fever, I was being sick every few minutes, and worst of all, my head pain was such that I don’t think anyone can understand it unless they have been through similar themselves. How does it feel to have a bullet tear through your brain, over and over again, but you perversely keep surviving it… I can’t believe it’s even possible to live through the sort of pain that comes with these attacks. It is almost inevitable that I suffered another small bleed yesterday; the symptoms are in perfect accord to previous occasions where an MRI did show fresh blood in the location of my AVM. What happened yesterday was beyond the realm of the typical human experience.

Although there were hours that I wasn’t sure I would survive, eventually, around 4pm, I passed out from sheer exhaustion. I slept feverishly until 7:30pm. So weak that I couldn’t lift my head off the pillow, I asked Matthew to bring Alex to me, to have a cuddle, as I had not seen him the whole day. We then laid in bed together until Alex’s bedtime. I was finally able to keep some meds down, which began to slowly take effect.

Last night I was unable to sleep, simply because my body was in so much pain. It feels as if every bone from the waist down has been crushed, and I can barely move my head. I sat up most of the night watching M*A*S*H. At 4am I began to get a very bad migraine coming on, so I took the relevant meds, turned the TV off and lay in the dark (still awake). Eventually dawn came, and with it, I rose, releasing my birds from their cage for their ritual morning flight.

As of writing this, it is around noon on Saturday. I have spent the entire morning thus far in building up the strength necessary to sit up and write. As I reflect on the last several days I am slightly in shock, simply from the amount of pain that I endured and lived through. I’m excited and proud of Karen and the whole Revive & Thrive effort. I also have some exciting news about my book, The Lemay Leveller which will be announced soon too, so despite my abysmal health, things overall are pretty great. I will be purely resting between now and the next several events that I have planned for the rest of October.

Well that’s all for me this time around. Thank you for reading, as always. What is the moral of this blog? Aren’t blogs supposed to have morals? Mine are usually rather amoral, but I’ll have a go. How about… Don’t give up. Some days you’ll be on top of the world and the next day you’ll be clawing for life, suffering through a narrow brush with death. But give it time. The great wheel of life will spin again, and you’ll be back on top. But most of all: Love your family and friends, and be engaged in your community. Life is short, life is not a dress rehearsal for the real thing. Make the most of what you have.

Yours,

Erin S.N.

Thursday’s walking tour passing GO4 in Trinity Church
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