A Message From Suzanne
3 July 2015
From Suzanne:
My Gratitude:
I have no words sufficient enough for the gratitude for your help and well wishes--except to say I will pay it forward when I return. Not only in the work I came to New Zealand to do on behalf of bereaved families (in honor of my son Avery), patient-provider communication improvement and stillbirth prevention -- but in sharing the love and support back to all of you. I wish I could thank each of you individually here, but at the moment typing and writing still take a fair amount of energy.
To those in the SANDS CIRCLE OF AWESOMENESS: You have been amazing to me. The folks from Sands Wellington/Hutt Valley starting this Give-A-Little page…humbled me beyond words. Thank you to Vicki and her family, Sarah, Catherine, Joan and all those who helped that I didn’t know about. All the messages on the page from last week’s National Sand’s Conference goers, the PMMRC committee (thank you for the flowers!) and attendees, and the participants in the Middlemore Hospital workshop were wonderful and so beautiful. Your generosity – whether $1 or $100 – for a stranger from America you heard talk for maybe an hour – demonstrates the big hearts and kind souls in the baby loss and bereavement community in New Zealand, Australia and the Southern Hemisphere. Tania Cornwall from Sands Aukland went above and beyond to sit with me in the hospital for several days, bring me information from a GBS support group leader near her home, and buy me a Kiwi charm for Avery’s bracelet.
For my family and friends and colleagues back home who kept me sane, sent flowers and/or FB messaged me during the ONE hour a day in the hospital lobby where I could scrounge a wifi signal (no TV or internet in hospital wards) - thank you for being there. The messages and the donations (some of you were SO generous – wow!) that you posted here on the Give-A-Little page mean so much to me and to getting me back to you. I will hug you with love and gratitude when I see you next.
Mom, Jen, Stas, Steve (and the Coger Clan), Jason, and Drissana…thank you for constantly checking on me and worrying and making me feel the love when connecting to anyone outside the hospital was an effort.
I want to also thank Debbie and Sid Davies who have opened their home to me for the additional time I need to be here, shuttling me to medical appointments, feeding me yummy food (including the delicious lasagna from Thelma!) and sharing a view that rivals any flash resort. I may not have gotten to Middle Earth in Hobbiton…I may have only made it to Middlemore Hospital…but the respite in their home is as gracious as any Hobbit could hope for.
My Health:
I was diagnosed with Guillian-Barre Syndrome, it is a relatively rare neurological disorder (non-contagious, non-hereditary, but a big mystery as to who gets it and why) in which antibodies that had been developed in the body to fight an infection (like the respiratory bug I got in Scotland) turn around and attack the myelin sheath covering the nerves. Luckily, I got the mild form -- no complete paralysis or affect on the diaphragm or lungs. Instead, I have numbness with constant pins & needles in hands and feet, no reflexes, decreased fine motor control (holding a pen, a cup of tea, typing, etc) and some trouble walking and overall fatigue. But symptoms haven't gotten any worse in last day or so, which is excellent news.
My Recovery:
I'm on a 3-6 month (maybe longer) road to rebuilding the damaged nerve structures. There are no known meds/cure - just my body's own healing that needs boosting. But full recovery is likely and I am very very lucky it wasn't worse. If anyone knows of chiropractors, masseuses, accupuncturist and/or reiki practioners who trade in green dollars or will barter or charge sliding scale, in San Francisco, I would love the contacts. Some of these treatments have been shown to speed recovery or at least ease the pain/fatigue related to the symptoms.
My Return:
I have been cleared to travel home on July 9. When I’m able, I hope to write about the experience – from the kindness of strangers, to being ill in a foreign country, to the importance of making sure you get travel insurance… ;-)