Health for Lindsey White:

My Health Story is one of advocacy, perseverance and pain; it’s not over yet.

I was born with an abnormal spine, but did not find out until more than four decades later. It’s a type of spina bifida that cannot be easily diagnosed, because of the connective tissue disorder with which I was also born (called Hypermobile Ehlers Danlos Syndrome or HEDS). By the time I learned I had HEDS, I had experienced several motor vehicle accidents and struggled with abnormal symptoms for many years. Local medical professionals where I live were unable to help me or even recognize how my symptoms pointed toward my spinal cord becoming tethered, which began in 2014 after two accidents the year before.

In 2016 I experienced my seventh motor vehicle accident. My life and health have never been the same and I’m now unable to safely play any and all of my beloved instruments. I worked beyond my capacity for some time, in my efforts to gain health and struggled with a perpetually re-injured, twisted spine as a result of accident-related injuries.

In 2019, I was surveilled by an investigator hired by my Provincial auto accident Insurer, who accused me of not being who I say I am, resulting in my being discriminated against and cut off from the support I was relying on for my health care needs. As the pandemic arrived and my high-risk spouse and I were managing to repeatedly pivot, adjust and cope with changes, I continued to search for answers about the differences and difficulties experienced by my body. I also began pursuing justice. This Investigator surveilled many disabled and vulnerable individuals without their knowledge or consent. I am genuinely afraid for myself and my community as we are all currently at risk of further covert surveillance and discrimination. I openly called for support from my local elected official and approached a number of other offices, designed to address fairness in dealings with this Insurer, to no avail. I also initiated a petition, but due to the extensive advocacy required to pursue my specialized health care needs, wasn’t able to promote or actively market it’s message in communities where I knew it would be supported. The investigator who followed me and watched me did not provide Child/Adult abuse registry checks or Criminal Record checks to the locations where vulnerable community members were surveilled. I told the Executive Director of the Manitoba Human Rights Commission that I can’t live with myself, knowing that this can happen again any time. To me, or to anyone I know.

I continued to provide new medical information to my Provincial Auto Insurance, as I received it from specialists and other medical providers but they continued to indicate their desire to see my case in court (The Automobile Injury Compensation Appeal Commission or AICAC), no matter what.

In 2023 I hit a wall. Physically, mentally and emotionally… I was burning out after years of confusion surrounding my undiagnosed conditions and from overwhelming traumatic stress, while losing my ability to work and afford the treatments and therapies that were helping me cope. When I stepped up to ask for help, my community supported me – coming through, in ways I won’t ever forget. These gifts are what allowed me to continue to keep going, and to believe in what my body was telling me was true when I was questioning everything.

Although I was finally diagnosed with spina bifida and tethered cord syndrome at the end of 2023, my representative/advisor indicated this information would best be omitted from my AICAC hearing in early 2024 as plenty of information had already been submitted. My request for disability accommodation during this hearing was denied and I also experienced further discrimination, along with hours of extremely stressful interrogation by the Provincial Insurer’s hired witnesses (Medical Professionals!) and Legal Team over multiple days. The stress on my spine has not returned to it’s baseline prior to this week-long hearing and in fact, has continued to steadily worsen ever since. And although I submitted my tethered cord diagnosis after the hearing verdict was announced, the Insurer’s response was to insist that it had no impact on my claim, and to question whether these conditions even exist. Dismissal and invalidation, however traumatic they may be, have become commonplace. And the doctors who said this were likely the very same ones who, while under oath in my AICAC hearing, said untrue things about my capabilities (based on my appearance). It was extremely upsetting and also, unsurprising.

Manitoba Health were as dismissive of my need for specialized care as most (uninformed) local medical professionals have been. Their refusal to understand meant that I had to acquire a Lawyer and prepare for another hearing – this time, through the Manitoba Health Appeal Board. We managed to successfully overturn the decision to deny the surgery that I need with the Specialist I need… which is a tremendous victory for any and all future patients who need to leave Canada for specialized care, including me. However this has also cost me several months of worsening symptoms.

Since a tethered spinal cord pulls on all nerves connected along the entire spinal column, I have experienced symptoms relating to all aspects of my body’s function. I’ll summarize a very long list by saying that every day has been a struggle and perseverance in the face of these issues has not always felt possible. It has been extremely difficult to manage my health in general every day, in a Province and Country where there is no specialized medical care available and while knowing that the care I need is on the other side of the border… and costly. 

I attended a third hearing with an “internal review” officer from my Provincial Auto Insurance, to address a number of issues and entitlements surrounding my claim. The Neurosurgeon who diagnosed me with both congenital spina bifida and acquired tethered cord syndrome explained quite clearly how my spine was affected by each motor vehicle accident, and I submitted substantial evidence of this both ahead of and during the proceedings – even playing a clip of the recording from when this specialist first explained my diagnosis. Beyond the fact that my co-occurring and complex conditions absolutely exist, their life-altering symptoms were 100% catalyzed by these accidents. For the first time in a long time, I felt that I was seen as a human being by another human being and the truth was made plain. However, I was once again discriminated against by MPI medical professionals as “not looking sick” under surveillance… so this has been added to the growing list of human rights issues.

I am continuing to advocate for whatever semi-specialized care I am able to access locally – all I have the capacity for is to keep taking care of myself, one day at a time. I am also initiating a new human rights complaint – this time directed toward the Minister of Justice and MPI (Provincial Government) along with more substantial evidence of significant, repeated discrimination and violations of my human rights. 

I’m hopeful to also be taking baby steps toward planning and preparing for the trip and procedure of a lifetime: spinal surgery in 2025! After spending the last two years fighting for my life (in many ways)… next year it will have an opportunity to be “saved”. While there are risks involved, my medical team and I are very optimistic about the potential for my health to improve once the bottom of my spine (called the “filum terminale”) is removed and no longer tethered or stuck, abnormally. I should experience the halting of symptom progression and also, if I’m fortunate, the reversal of some (or most?) of my symptoms. My fingers are all staying crossed. There is only one Neurosurgeon in the world whom I trust completely to perform this procedure and I am so grateful for all who have supported me as I have fought so hard for, and will soon receive the specialized care I need from this amazing “rockstar” Doctor.

Thank you to all who have expressed care and concern. Please keep your fingers crossed for my recovery post-op in the New Year, for timely access to Healthcare and for justice – for me and for others like me. For all.

– LW

We did it!

June, 2025 update:

My precedent setting case will not make any difference if healthcare professionals refuse to acknowledge that blind spots even exist. Although there needs to be some accountability, this is not about past blame but about present and future patient safety. I will continue to sound the alarm to whomever is in power… to increase the likelihood that I might get what I need, along with every future patient to come. Here is my letter to the Manitoba Minister of Health (and Deputy Premier) from last week, which I’ve decided to make open/public, in case it even slightly increases the chances of a response. It also serves as a general update, for those who have followed or expressed interest in my story. Please know that it is not mine alone. Yesterday, I received a tearful message from another Manitoban with EDS & Tethered Cord symptoms who has not yet been able to access a referral for diagnosis or surgery. I know from experience that their pain being misunderstood is harmful and that even the ER isn’t safe for them, at their worst. They were also surveilled by an investigator (hired by MPI) because they were injured in accidents and also do not look sick. We have been repeatedly victimized but by choosing to keep going every day, we do not remain victims. All I can do to help any of us is keep trying to help myself and to recover as well as I can, while raising my voice in meaningful ways toward positive change. This renegade has tremendous hope that it is possible, however slow and/or incremental. We are all humans, with rights, who deserve safe and adequate care. We deserve access to better health today and tomorrow. And I very much hope that Uzoma Asagwara agrees.

#ministerofhealth #Manitobahealthminister #uzomaasagwara 

July, 2025 Update:

It’s disability pride month and the Manitoba government’s treatment of disabled people is shameful. Although the Minister overseeing accessibility attributes her recent harmful comments to poor event planning and stage management oversights, there has been no acknowledgement of the irreparable harm done by re-introducing easily removable barriers to access for deaf individuals. This harm is something I have experienced repeatedly while navigating provincial health and justice Systems. When confronted about pervasive, problematic and preventable ableism, the Manitoba government continually demonstrates profound lack of understanding and outright refusal to ensure equity is even an option. This is especially true when it comes to healthcare but pertains to other areas and issues as well. The NDP have constantly championed their “listening tours” as the means by which they aim to solve these problems. They may claim to be listening but I have yet to feel heard and I’m not alone.

Minister Fontaine apologizing while sidestepping the actual issue at hand demonstrates a complete lack of intention to listen to, acknowledge, learn from and/or to remain open to criticism. She essentially trivialized someone else’s harmful experience. This is someone I could not trust to oversee my rights to accessibility in the future. I’ve experienced enough dismissal and invalidation for one lifetime.

Minister Asagwara’s office offering to help me in small ways and then not following through seems in line with this behaviour (but is not helpful to my accessibility of health or justice as a disabled individual). But then for them to commit so strongly to resolving and removing barriers of access to care for another patient population… it amounts to discrimination or different treatment. Which is unacceptable.

If the Province IS interested in equity, accessibility and improvement of systems for the benefit of all Manitobans… I hope they will demonstrate that by doing better. Every day that passes without the support I need affects the rest of my life.

#Manitoba #Healthminister #Ministerofhealth #uzomaasagwara #dobetter #help #eds #ehlersdanlossyndrome #spinabifida #tetheredcord #tetheredcordsyndrome #disabilitypride #disabilitypridemonth