A Gentle Reminder…Your Truest Beauty Comes From Within You
I have spent the better part of almost 2 weeks now desperately trying to wrap my head around so many difficult decisions I need to make over the next while as per the next steps of my journey. One of course being whether or not I want to try DBS (Deep Brain Stimulation) as an option.
Although, at the end of the day, it is ultimately my decision to make, I still feel the need to have my family weigh in on the decision-making process. My kids are all mature (ish) young adults by now and very capable of having mature (ish) conversations with us as well. They have been along for this crazy ride with me for almost 9 years now (respectively they were 11,14 &15 years old when I first took ill) and have seen me go through hell and back ever since which is why I feel it’s only fair they be included in any and all potential life-altering decisions in my journey and in our lives. And yes, this has included a very open and honest conversation recently about M.A.I.D (Medical Assistance in Dying) too.
During our discussion about the DBS procedure earlier this week, my kids listened with intent and asked lots of questions in regards to the treatment itself and its potential side effects. The Neurosurgeon (who is world renowned and has dedicated his long career to the study of Neurodegeneration and Functional Neurosurgery and was even part of the founding Scientific Advisory Board of the Michael J. Fox Foundation team) assured me during our consultation that if I choose the less invasive ultrasound option which I’d be considering, there would be minimal risk or side effects from it.
The procedure is still in its clinical research phase though for patients battling “treatment resistant depression”, which is why and with good reason, there is even more fear among my family, including Rich, that I will once again be left with irremediable damage given my history with modern day medicine thus far. I am living proof, especially when it comes to experimentation of treatments.
It almost seems laughable by now how much my life got even more turned upside down a year ago due to one such treatment, an experimental treatment that was also to be of minimal risk but yet somehow caused me severe neurological damage and so, it’s completely understandable that my family is scared, as am I.
It’s something that I have struggled with in my head probably 50 times a day since my consultation with the Neurosurgeon. It’s weighing heavily on me. But at the same time I know my family will support me no matter what I choose or decide, even going so far as to quote my words from a recent Blog, (in case you missed it, click here to learn more: https://wheredidmommyssmilego.com/2023/03/14/hardest-decision-ever-your-thoughts-and-prayers-are-most-welcome/), words that originated from the Neurosurgeon himself when he said to me, “You’ve tried everything else out there already”. “What if this works?” and “Please consider this as your last resort before M.A.I.D.”
Quotes which bounce around in my head daily as well.
Of course our discussion could not have been complete though without discussing the real elephant in the room regarding this experimental treatment; the one that includes having to shave my head for the procedure.
Several years ago in June of 2018 I posted a blog I’d written and titled “Chopping Off My Security Blanket” shortly after getting a haircut that I think as I look back on today had triggered some events of childhood trauma which at the time I had not yet confronted and believe it or not, centered solely around my hair. I also wrote about how I’d come to see my hair as my security blanket in my adult life and how nowadays I look at my hair as a piece of my identity and the one part of me that I can control or to which is not frayed (except maybe when I wait too long to cut it!). In my eyes and for a long time now, I’ve felt like my hair was possibly my best feature and the only part of me I accept compliments as truth.
I wish I wasn’t grappling so badly with this very daunting decision or even allowing the decision I make to be weighed so heavily on whether or not I am brave enough to shave my head like so many other millions of women have to face doing every day due to a life threatening illness like cancer or women experiencing hair loss due to conditions like alopecia or other hormonal related disorders; but the truth is, it is, which is why I need to keep reminding myself that mental health is health too!
I know it’s “only” hair and that it will grow back over time. I know in my heart that my hair doesn’t actually define who I am, yet here I am continuing to flip back and forth between being okay with it one minute to the polar opposite the next which was why before I can go any further or make any final decisions I thought that maybe it would be a good idea if I made an appointment to have a free consultation with a wig specialist first (today was the first of two appointments, the second being next Saturday afternoon somewhere else).
Today I got to experiment with different looks and hairstyles and learn more about the many different options as well.
Wigs can allow you to express yourself in ways that sometimes your own hair just can’t. They can give you a real confidence boost as well and never leaving you with a bad hair day either.
The options are endless and overwhelming but with these endless and overwhelming options also comes the opportunity to create new personas for yourself which can actually be fun. So today I focused solely on the fun side of creating a new persona, putting aside any potential traumatic impact it may have on me when it comes time to shave my head.
Today I focused my energy on rejuvenation and restoration and just kept reminding myself that no matter what lies ahead for me or which path I choose that I am confident in knowing that my truest beauty will always continue to come from within me.
My Aunt shared this beautiful story with me today and I knew exactly why she did so as soon as I started reading it. Thank you 😊.
An elderly woman had two large pots, each hung on the ends of a pole which she carried across her neck.
One of the pots had a crack in it while the other pot was perfect and always delivered a full portion of water. At the end of the long walks from the stream to the house, the cracked pot arrived only half full.
For a full two years this went on daily, with the woman bringing home only one and a half pots of water. Of course, the perfect pot was proud of its accomplishments. But the poor cracked pot was ashamed of its own imperfection, and miserable that it could only do half of what it had been made to do.
After two years of what it perceived to be bitter failure, it spoke to the woman one day by the stream. ‘I am ashamed of myself, because this crack in my side causes water to leak out all the way back to your house.’
The old woman smiled, ‘Did you notice that there are flowers on your side of the path, but not on the other pot’s side?’ ‘That’s because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them.’ For two years I have been able to pick these beautiful flowers to decorate the table.
Without you being just the way you are, there would not be this beauty to grace the house.’
Moral of the story:
Each of us has our own unique flaw. But it’s the cracks and flaws we each have that make our lives together so very interesting and rewarding. You’ve just got to take each person for what they are and look for the good in them. Value each other, accept one another as they are and for all that they do; appreciate the people in your life for their uniqueness and imperfections each and every day 💕💕💕
And while you’re at it, don’t miss out on all the beautiful flowers on your side of the path.
“What lies behind us and what lies before us are small matters compared to what lies within us. And when we bring what is within us out into the world, miracles happen.”
– Ralph Waldo Emerson
I received another email from the officer in charge of my complaint to the police department. He asked me to sign some paperwork as consent, giving him permission to forward all the information he has already gathered from me in our previous phone conversations to date along with a brief summary he wrote as well before passing it along to the officer in charge of the YRP Mental Health Resources Unit.
He agreed in his recent response to me that collectively we need to advocate for change and that my complaint needs to be reviewed by their Mental Health Resources Unit and not the Professional Standards Unit.
In his summary he wrote that he wanted to add some additional information about the need for further help for people in crisis by specially trained, plain clothed officers, rather than uniformed officers, along with the ongoing support of social workers.
His hope in doing so, along with mine is to help reduce the stigma and fear that many person’s in crisis often experience when dealing with uniformed officers.
In his closing paragraph of his summation he asked for a resolution to the matter “with the mindset of moving forward in a positive way, with thoughts of future training, future expansion of the unit and budget.”
This right here is what fuels me and helps motivate me to keep fighting.
I always look forward to spending time with them and was truly looking forward to our evening together, even though I was beyond emotionally exhausted from the week I’ve had.
They brought pizza with them. Yum.
We engaged in some great conversation. Caught up on each other’s lives.
We watched the Leafs game. They won in a shoot out! Yay.
And we laughed; sometimes directly at the Leafs themselves (it felt like a deja vu from the evening before while watching the Leafs game with some other friends of ours).
But still, through all those wonderful moments of joy last night, as the evening wore on, my emotional exhaustion got the best of me once again and all those wonderful moments of joy quickly spiralled down the rabbit hole into a very dark place; causing an unbearable flare-up throughout my entire body.
And then, while holding back tears, the negative self-talk in my head got real ugly; really, really fast.
Yup, depression and anxiety can steal those moments of joy from right under you without a moment’s notice.
I kept repeating over and over again to myself; I can’t do “this”, I just want to die. I tried telling the monsters in my head to STOP it but they just got louder and louder.
I leaned into God for comfort.
“This” right now for me relates to the accumulation of stress and overwhelm I’m experiencing from both my personal and work lives (today is my official 3 month anniversary, yay). I feel trapped, I feel powerless and everything feels like it’s beyond my control.
Everyone experiences emotional exhaustion in different ways. For me it’s a lack of motivation, irritability, physical fatigue, hopelessness, feeling stuck, difficulty concentrating or making decisions, brain fog, anger and an impending sense of dread or doom; making my symptoms of anxiety and depression work overtime.
“This” is becoming all too consuming for me. I just keep reminding myself though that, I’ve got ‘this’.
*Thank you to one of my many supporters who sent me this quote yesterday (see pic attached). I will hold these words close to my ❤️.
Rich and I attended an early morning Shabbat service today at a Synagogue in midtown Toronto. In my nearly 52 years of life, today was the first time I have ever done this. To be honest, the only time I ever really go to Synagogue is for the High Holy Days marked on the Jewish calendar or to attend a Bar/Bat Mitzvah service or Wedding.
But something, or maybe it was someone was calling me there today for a higher purpose. People turn to prayer or help from a higher power for many different reasons and in a variety of situations; oftentimes it’s when we are experiencing negative feelings, such as anger, hopelessness, grief or fear and other times it’s when we feel as though something is so far out of our control. I’m kinda stuck in the middle of all of the above right now.
We could have chosen to go to one of the many Synagogues near to our home this morning but we chose this one in particular because of the deep connection I feel toward the Rabbi who leads this Congregation.
Along my journey I have had the privilege of meeting many incredible people, some of whom have left an everlasting impact on my life in some way or another and this Rabbi quickly became one of those incredible people for whom has left an everlasting impact on my life since meeting her several years ago. She is a true spiritual leader with so much empathy and kindness in her heart.
I have expressed many times in my writing that I have always leaned more towards a belief in spiritual healing to help revitalize both my body and mind and help me to find more meaning and purpose in my life. I have also said how much I have struggled to put my trust in God, however, with the year I’ve had both personally and emotionally I have tried to turn to God to ask for healing, forgiveness and saving more than ever before.
Prayer can actually feel very encouraging when we build connections and receive support from others in their prayers as well, which is also why, today, as we stood together with the rest of the congregation, (which included many family members and loved ones of a sweet Bat Mitzvah girl) and read the healing prayer aloud for those who are suffering from illness, Rich took this opportunity to speak my name, asking for a blessing, compassion, restoration and strength from God.
We all long for connection in our lives and many people do turn to their religion for strength and renewal to enrich their lives and strive for a sense well-being, and now with the arrival of spring on Monday it feels like the perfect season and time of year for a rebirth. It’s the time of year when the temperature begins to rise, where the days start to get longer, the birds begin to chirp again, the grass gets greener, the trees come alive and the flowers begin to bloom.
Today I felt a higher purpose and deeper connection in my heart as I was reminded of the significance and importance of connection and rebirth through prayer, spiritual healing and even a higher power.
Having others in your life who love you endlessly, who support you unconditionally, who continue to remind you of your worth and who are there for you through the hard times and heartbreak can make you feel as though you’ve found a four leaf clover or a pot of gold at the end of a rainbow.
My brain feels like scrambled eggs right now; burnt scrambled eggs to be exact.
I’m exhausted and overwhelmed.
I have a lot to think over right now.
But I don’t even know where to begin and it certainly doesn’t help that my ability to focus or concentrate on any given task has been completely depleted.
The brain fog I’m experiencing is making it really hard to put my thoughts together. I can barely remember what I’m doing in the moment.
I forget what I’m saying mid sentence as my thoughts are so hazy and difficult to grasp.
Where do I even go from here?
What if I want to choose all the options I’ve recently been exploring?
Which do I choose if I could only choose one?
What if it’s the wrong one?
What if my fear of failing again makes me choose the wrong one?
What if I fall again? Only this time it’s for good?
“Oh, but darling, what if you fly?”
A very dear friend of mine sent me this quote today as a gentle reminder. I am truly blessed to be surrounded by so many beautiful, supportive people in my life each and every day who continue to lift up my broken wings in the belief that one day soon, I will soar high above the deep blue sky.
Rich tried to talk to me on our long drive home. I didn’t have much to say. I was mostly numb, almost indifferent from the moment I left the hospital.
I promised myself I would take a few days to let it sink in. I wanted to wait until my appointment tomorrow with my therapist and early next week with my Psychiatrist to really try and gain perspective on everything I learned yesterday but then late last night while I was all alone with my thoughts it hit me; it hit me real hard.
My emotions are running awry at the moment so having another previously scheduled consultation this morning has only added to the overwhelm and confusion I’m already feeling. This time it was with a sexual health specialist in San Diego who I spoke about a couple of weeks ago in a blog. He is a world renowned Guru I’d found through my own research, testimonials I’ve read online, a Facebook group I now belong to and several specialists I’ve spoken with who have all referred to his 100’s of research papers (through their own Google searches) he’s published on the topic of one of the many other conditions I’ve been dealing with since last April. The one that’s been the most difficult to navigate and the reason I started looking outside of Canada for help because almost every referral my Psychiatrist has made for me over the past year has been turned away as most doctors here are not fluent in my condition.
Another promise I made recently after speaking with the advisor on the M.A.I.D team, my healthcare team and all of you was that I would exhaust all avenues I have left before making a decision to pursue M.A.I.D or take matters into my own hands.
It’s becoming more and more difficult though. I’m no longer just dealing with a mental illness. I’m also dealing with unbearable and unrelenting neurological and physical issues too and with each one of my conditions comes new specialists and treatments to look at and at this point in time they each come with their own set of barriers and obstacles including yesterday and today’s consults.
My one condition we discussed today is rare, incurable and therefore difficult to treat but I felt understood when speaking with the doctor. He broke it down into 5 separate parts for me and explained each one; focusing mostly on my brain as the possible root cause of it which makes most sense to me given how it all began. After asking me about my history and symptoms they explained in detail the abundance of tests they would likely perform along with an actual thorough examination and a more focused MRI. I can barely get in the front door to see a specialist willing to even look at me in Canada as they don’t know how to treat this condition but like with every other new pursuit I’m after right now as I try to exhaust all my options, this too comes with no guarantees and it also comes at a hefty cost; an American dollar cost that is.
For now I guess all I can do as I begin to process the past couple of days is add it to my list of options while I desperately try and hang on to hope.
He told us that he is the only Surgeon in Canada who does these types of procedures and has been treating patients with Parkinsons and other Neurological disorders for many, many years now.
As I mentioned back in November when I had my first consultation with the Psychiatrist on his team was that “Deep Brain Stimulation” has been around for approximately 70 years. It’s quite an invasive procedure, which includes drilling electrodes into your brain and involves a lot of daily, monthly and yearly maintenance throughout one’s lifetime thereafter, but I also learned that day that there is a much newer, less invasive and no further maintenance type of procedure which is done through an ultrasound (it’s been around since 2003). I felt like that was something I’d be willing to look at further but today as the Surgeon described the procedure in more detail, I wanted to cry, throw up…and then run as fast as I could away from the hospital.
He explained that the procedure has minimal risk involved. All good so far. He said the results have been mixed, helping many to calm their symptoms of Depression and Anxiety down and others who have not felt any relief at all. But then he proceeded to tell me that they would need to shave my entire head in order to get close enough to the surface of the brain. Their main goal in doing so is to interrupt the circuits by burning the cells in the brain closely related to depression and anxiety. The procedure is also irreversible.
I question every decision I make, that is of course if I’m even capable of making the decision in the first place. I beat myself up, always believing whatever decision I’ve made will be the wrong one, it can get real ugly, real fast. But this is probably the hardest decision I have ever had to make in my entire life.
The surgeon asked that I go home and talk it over with my care team and loved ones and that if I would like to proceed to the next steps I would have to meet again with my entire care team before they would consider booking a date; which at this point in time is about 3 months out.
I asked him if he believes that this procedure could help me at all with my other Neurological issues as well. He said he can’t make any promises, just like he can’t make any promises that it will help with my Depression either because it is a completely different part of the brain which they would be working with but he then explained that because the different parts of our brain speak to one another that it certainly can’t hurt.
I asked him for his honest overall thoughts and professional opinion after listening to my history and reading his notes he had from both my Psychiatrist and the Psychiatrist I’d spoken to several months ago on his team which he had on hand. His first thought was that given my history and that I have tried everything else out there, “WHAT IF” this works! His second thought was that before I go down the road of M.A.I.D (which I told him I had begun the process of recently) or other suicidal ideations I live with daily that he hopes that I would please consider this as my last resort first.
To say that my brain is overloaded at the moment is an understatement. I am so filled with gratitude to have such an incredible team of healthcare professionals in my corner who refuse to give up on me but at the same time we all know that there are obviously no guarantees it will even help me at all and given my long history of treatment and medication resistance I think it’s only fair to say that I am terrified out of my mind right now that I will once again be left in that one percent (or less) risk category only to cause further harm to my mental and physical wellbeing. And if I’m to be completely honest here, my vanity is also playing a huge factor in all of this as well.
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