Click here to see the fun highlights from today: https://www.facebook.com/reel/1154707881890039?mibextid=9drbnH&s=yWDuG2&fs=e
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.
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