Several firsts occurred this week – Monday I attended my first Brain Injury conference, traveled, and stayed at a hotel for the first time since the accidents. Because Brain Injury is never predictable, I’m never really quite sure I can do something I want or plan to do.
I used to love to travel for work, I enjoyed flying, staying at hotels, going to training or conferences. So much of that love had been sorrowfully and regretfully given up. It’s of no surprise, returning to my room the first time, I skipped down the hall! It was delightful to feel that spark, so many years post-injury.
A lot of pacing and planning came into play from the moment I received information about my scholarship being approved. Some successful, some not so much!
I hadn’t planned for a migraine, but acquired one on my drive over. I wish I’d planned for more rest the day before and the day after. I don’t think I’ve driven that far in years, either, and something I didn’t foresee as being a big deal since I’ve “done it in the past.”
Driving over I was thinking of this new experience in the new me versus how I would have handled it as the old me. The old me would have found out who else was going to the conference, would try to carpool, share meals together, etc. The new me is devoid of those extras and my main concern was just getting there, and hoping I could handle everything, and not end up missing out due to being sidelined by a migraine!
I did not sleep well that night, waking up every time the heat or whatever kicked on. Oh my gosh, it was very tough to rouse myself in the morning from lack of sleep and migraine drain. Break out my drug of choice – caffeine! Got to extend my brain bucks from the get go!
The first speaker was comedienne Debbie Wooten, a TBI and Polio survivor, she was funny, but also one of us, with great messages that only those who have gone through the trenches can offer up as encouragement to others.
I attended seminars by Fred Langer and Craig Sicilia. Fred had been a nurse for over ten years and had experience with Brain Injury, became a lawyer, but also has a deeper knowledge of TBI because his nephew suffered a TBI while in Iraq.
Craig’s session was about self-advocacy and had two leadership students speak and also had a neat panel set up too. They showed videos and fielded questions, it is very impressive to see disabled students being taken to heart, given advocacy and coping skills, and strength to shine their light in their schools and community.
I used to work with youth groups in church, so the spark of energy found a receptive home in my heart “for sure!” (“For sure” is in quotes because Logan Olsen was on the panel and she delighted my heart each time she said that! What a beautiful spirit she has!)
I related a lot to what Craig was saying about how TBI affected his life, he sustained his TBI in 2005, lost everything, and said this was the most difficult challenge he has ever faced. He does a lot of impressive work with those kids, it was inspiring to see them shine with confidence. The light of those students lit up the room.
I don’t know of anyone with TBI who is trying to get people to feel sorry for them, I think we’re all just trying to find a path through without compromising our integrity or who we are.
By the time lunch came, I could see I was struggling with motor skills, early warnings of brain fatigue, but alas, the Type A personality lives! I had to push through, I didn’t want to miss anything or disappoint anyone for not attending seminars.
As time passed, my walking changed, my body temperature plummeted and though I’d been comfortable prior, was terribly cold, my heart started racing. I asked the conference organizer if they had any rooms left for that night, she said she’d look into it. She said she’d made an executive decision that those living on this side of the state would have one night only.
I expressed my concern, but figured if things couldn’t work out, I’d jack up on caffeine and make it through. I am glad I didn’t push myself. The night before in the shower I’d lost my balance, the morning of traveling for the conference I fell getting dressed.
I’ve always been fiercely independent, so asking for a room took some gumption and risk, and always being the giving type, it was really quite uncomfortable!
The kicker? While I was in the lobby and she was checking on the rooms, I had to hold onto the check-in table because I was the only one standing there who felt the earth move! The last time I experienced that was years ago when I had a lot of stress and ended up in the Emergency Room with one dilated eye. Nothing showed on the MRI then either! But that self-care lesson was well learned.
Much better safe than sorry, they found a room, while it was getting cleaned I found a secluded space to rest. Later I swam in the pool (but I was still freezing!), warmed in the hot tub and helped relieve some very sore leg, hip, seat, and neck muscles. Then, cooked myself in the sauna until too warm. I put in earplugs to help me sleep through the night and worked, yes, worked at resting.
Even with the struggle to get there, and the organizational faux pas that had me upset (no room the first night, wasn’t on the registration list, etc.) I am glad I got to go. Our Occupational Therapist, Janice was there too.
A couple of times during the event I sang the theme from The Twilight Zone to Janice and said it was weird being there because I related so much to what was being presented.
Janice said it wasn’t weird – this is what it feels like to be a part of something bigger.