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On one hand, I’ve been truly grateful to be able to generate some income again, in terms of seeds, plants and produce from my garden. (Rhubarb anyone?)
But on the other hand, it has also meant that I have to be more careful than ever with budgeting my energy and capacity as it fluctuates day-to-day and I challenge my own limitations. My current symptoms align with a condition called “Thoracodorsal neuralgia” – a type of neuropathic pain caused by brachial plexus compression and irritation or damage to the thoracodorsal nerve. (In my case, this is as a result of having a tethered spinal cord which went undiagnosed for a decade.) But I still have no local medical support in terms of qualified specialists and I’m not being closely followed by any physical therapists. So me, myself and I are allowing my body to be in charge as we experiment together and discover what possibilities exist from moment to moment and day to day. I’ve also been encountering a number of other difficulties recently which have taken me far beyond my capacity and limits in terms of stress in the past few months. But I’m doing my best and allowing it to be good enough as much as I can.

Something that I’ve found very challenging for many years is covering and uncovering plants when protecting them from cold or other environmental elements. And some recent mosquito fogging prompted me to make an effort to protect my milkweed plants that were covered in monarch butterfly caterpillars. The process of covering and uncovering these plants (to aid in worldwide conservation efforts) was easier and generally went better than it has in years. Which is another sincere cause for celebration.

 

In just the last few days, I’ve been able to play a couple of notes on piano… without significant, painful repercussions. This might not sound like very much, but is more than I’ve been capable of for several years. Unfortunately, I had a major flareup for other reasons after that and haven’t been able to try again since. I’m sure those notes will multiply quickly but for now, they’re worth celebrating as they are emblematic of slow, steady success over 16 months of daily experimental rehab. It is my hope that this success expands widely into other areas of life as well, including advocacy.

Last week I received two disappointingly dismissive letters from the CPSM or college of physicians and surgeons of Manitoba. Like many medical providers, they would really like to brush off my concerns on the basis of me being a complex patient. And on behalf of all Manitobans with EDS, I do not intend to allow this to continue.

The MHAB or Manitoba health appeal board did not rule in my favour in their decision from my March hearing. Unfortunately, this had nothing to do with patient safety and was solely based on qualifications of a US provider. Qualifications that do not exist here in Canada. And so, because my Province refuses to cover consultation appointments with my EDS specialist and I cannot afford them at this time… once again, this patient suffers due to broken medical and legal/Appeal systems. This is beyond disappointing. If I could afford to see my EDS specialist this month I’m sure I would be much closer to full fine motor capability/capacity. And it is frustrating to be held back by logistics involved in Legislation that have nothing to do with patient safety. But this fine motor function continues to be among the most difficult challenges for me throughout my recovery.

In the spring, the current government proposed a patient safety charter, intended to help Manitobans navigate healthcare system challenges.

However, that same month several doctors collaborated toward a letter of warning that Winnipeg hospitals were nearing disintegration. And a recent article includes the following quote from our provincial Health critic here in Manitoba: “It’s not speculation. It’s from people who know what they’re talking about, and it should be raising significant alarm bells within the provincial government.”

Every July, I am reminded that my father lost his life– Not due to his illness (which he fought well) but due to treatment. And very recently, I had to advocate for the life of a loved one who was hospitalized and whose life was at risk because they were not being given the care they needed. I have written to the Minister of health on multiple occasions on my own behalf, as well as to other Ministers and I am no closer to receiving the safe, specialized care I need to support my recovery. So I am drafting an open letter to the Premier of Manitoba and directly requesting the Legislation changes my Lawyer suggested within the processes of my most recent MHAB hearing.

I have also been filling my social media feed alternatively with my art and with information relating to overall medical neglect and mistreatment of women and other specific groups including people with disabilities. (For example: did you know that 50% of women experienced medical gaslighting, as I have?) I’m sharing some truth to create awareness that I hope will ultimately reach individuals in power, upon whose door I have been knocking for many years. And I am not raising my voice alone. Women’s Health Collective Canada has developed a national campaign called, “Vitally important“ to spotlight the gap between how much women’s health matters and how little it is funded — and to mobilize the research, policy, and partnerships that close it.

I will not be able to ensure beyond a shadow of a doubt that no one else experiences what I have in terms of my struggle to find appropriate healthcare. But before I die, I intend to act in whatever ways are positive and healthy for me; to continue raising my renegade voice and doing what I can. To use what is in my hands and to try. Because change is necessary and although it will not give me back a decade (or more) of my life, it may give someone else a decade less of torture… or a decade more to pursue what they love. It may give me both a present in the future.

Regardless of what is to come, I hope that my recovery trajectory continues along the upward spiral of improvement and that everyone who has supported me in any way knows how extremely grateful I continue to be for this possibility.

I also wanted to share that unfortunately my dog, Bear, is sick and needs medical care that we also struggle to fund. Please send our sweet boy all of your positive love and healing energy–any good thoughts or vibes in favour of his recovery are greatly appreciated. Next week is his 12th birthday, so feel free to help us celebrate with him.

Once again, here is a link to my kijiji profile, in case you want to get on board and help out by buying something nice for yourself or a loved one. (I am listing new stuff all the time.) Drop me a line if you are seeking a particular seed or plant.

It’s taking lots of water, but the garden is alive and growing and so are we!

Every little bit of support shown in my direction has added up to the many positive gains I’ve been making. All of it is keeping me moving forward, one step at a time. If you wish to help, you can send me an e-transfer and in return, you will receive free downloads of my July 2020 double instrumental piano album as well as access to demo recordings of other music in return for your gift.

E-transfers to: health @ lindseywhite.com (no spaces) will be gratefully accepted. (password: Health)

Thanks for being on this path with me! I will leave you with another one of my most recent poems but first, if you know someone else who may want to help support my future goals, please send them to the “mailing list subscribe” page of my official website to sign up and receive their own free copy of my book (of poetry, prose and other “Renegade Writings”).

‘til soon… I’m wishing you much calm and cooling relief from this month’s harsh Manitoba heat.

Thanks for listening, reading, following and watching,

Lindsey

—

It was once all gain… (July 2/26)

This dance is not one
That we were destined to lead,
And I don’t yet know
How we will follow

And yet, something in me
refuses to concede,
despite my whole heart
feeling so hollow

But I have known molasses,
Rushing rivers and Stillwater.
And I am well familiar
With possibilities and pain.

Not doubting for a moment
I’m still my father’s daughter,
I’ll withstand every loss,
Win, and risk for every gain.