Health Update:

Many parts of my health journey are over. And many others have just begun. As I grieve all that has been lost or not yet recovered, I allow my heart to stretch wide enough to also hold immense gratitude. For all the recovery I have been and continue to experience, and also for everyone who cares. Thank you for your expressions of support as I heal and learn how to pursue a new life, untethered. For the first time ever. I truly appreciate friends and family who have generously contributed food, encouragement, time and energy. (Some friends even collaborated to bring us a giant pot of food, and then refill it again and again until the freezer was full!)

This time has been an intense experiment… as I learn to trust my own “inner and outer being” more and more, I also gain more confidence in my collaborative community. And I look forward to connecting and reconnecting in the future.

In the meantime, I need all the good vibes I can collect while navigating this next phase of recovery. Although it is nothing like what I’ve previously experienced, my past experiences absolutely influence my present decisions toward a stronger and more stable future. Including both capability and accessibility. I am more determined than ever to find my way there… whatever it takes.

“Sometimes it is the artist’s task to find out how much music you can still make with what you have left.” (Itzhak Perlman)

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More here:

lindseywhite.com/health

UPDATE (10/29/25):

A year ago today, I paced around my home nervously while waiting for my Lawyer to call. She was in court all week, but wanted to communicate the MB Health appeal board’s decision about my surgery as soon as possible. So when I saw that I had inadvertently missed a call from “no caller ID”, I emailed her immediately and asked her to call me back whenever she was able.

The decision from the appeal board was projected to arrive 4 to 6 weeks after the hearing and it had been 7 1/2. I tried to reassure myself that, ‘Dr. Klinge’s examination of my documents one year prior  (2023) resulted in her seeing my body for what it truly was… and my EDS specialist painted an even clearer picture during her witness testimony. So it must certainly be possible that the board see the whole truth.’

When my phone rang less than a minute after sending the email, I was shocked and my heart rate raced through the roof. The part of me that was still present headed into the bedroom to lie down, (an effort to decrease my heart rate) but the rest of me was too anxious to relax and I ended up kneeling. My Lawyer wanted to let me know right away that… we won my surgery! I collapsed, doubled over on some pillows in tears. I knew it was possible… (and I thought I was prepared for the challenges of undergoing major surgery in another country, but I was not.) We congratulated each other and I expressed profound gratitude for my EDS specialist and particularly their testimony.

“You know what this means, don’t you? … that any patient with EDS can use this case as a precedent to substantiate their own out of country surgery!”  More tears of real joy – I sent flowers to my witness specialist’s office.

… that’s twice I’ve experienced court through appeals processes and both times, I’ve been told the law has been forever changed as a result.

MPI now has access to my surgery related evidence (including a photo of my removed filum, in which clear visible evidence of trauma can be seen). I have shared much of this information with the human rights commission and am very grateful to EDS Canada for sharing a letter of support on my behalf with the ministers of Health & justice, the human rights commission and also MPI.

Two doctors acted as witnesses for the corporation during my AICAC hearing last year. Unfortunately, they are the ones MPI will ask to “opine” about my latest evidence. Will they attempt to disagree with my specialist neurosurgeon’s opinion, doubling down on their previous misrepresentations of the truth? Or will they be forced to adjust their opinions in line with reality? Will they remain relentlessly committed to misunderstanding me, or will such a clear picture of the truth have been painted that it can no longer be ignored? Will they listen to EDS Canada about the validity of invisible pain, or continue to discriminate?

I am 33 weeks postop this week and the help I’ve needed all along can’t come soon enough.

I was supposed to have another postop follow up appointment with Rhode Island Hospital in mid September, then late September, then mid October and, long story short… it will be next week if I finally receive funding approval by MB Health OOP.

My advisor from the claimant advisor office is leaving their position and was not very supportive; at present, there is no one actively advocating for me… (other than myself) so I need every crossed finger for all of my many postop physical and mental health needs to finally be met.

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Any and all support continues to mean the world to my spouse and I as we navigate the coming phases of my recovery. E-transfers gratefully accepted to: Health @ lindseywhite.com (no spaces) – Password: health