Over the past several months it has been hard for me to be on social media. Over the winter holidays, and leading into the new year, I struggled to interact in this virtual world; none-the-less, in the real world.
I received several text messages, emails, private FB & Instagram messages over those months saying, "Are you okay?" "If you need to talk I am here" "Don't give up, don't give in, keep fighting!" "You are stronger than you know" "Don't let your mind play tricks on you" "Come out swinging like you used to!"
Don't get me wrong, I appreciated all of these messages and was in disbelief at the amount of encouragement and the wiliness of fellow humans to come to my aid.
I didn't reach out saying I was struggling, or going through a rough time mentally, but I guess my absence from social media made a statement all on it's own.
I am struggling and mentally I feel abused - traumatized!
Today, February 12th, is my 7 months postop brainiversary, since the invasive brain surgery to remove my PGCT. I guess I had unrealistic hopes and expectations heading into surgery; ones of getting back to being the "old me", "feeling normal again", and "getting back to doing what I used to do" before degrading so far in my illness (preop).
"Lasha, you're out of your wheelchair, walking, talking, and seeing again. It's time to stop pitty-partying and come out fighting again!"
To be honest, I'm tired of fighting... I'm tired of being strong... I'm tired of pretending that everything is okay when it's not.
I fought with the medical communities for over a decade! As a young woman, I tried to convince my doctors that my periods were not the source of all my issues and something larger was at hand.
And, after being diagnosed with a Pineal Gland Cyst it took me 3 years of specialists, medical appointments, and being treated like utter crap by neurosurgeons and neurologists in Canada before I sunk into a pit of desperation and declined - drastically - in my illness.
My native land, a country I grew up bragging to my friends about, threw me under the bus! I fought, I have always fought for what is right and just, and it ended in me being mistreated and not taken seriously by my own country and medical communities.
Yes, I did get my brain surgery, but only after I fought so hard to raise awareness (towards a misunderstood mass in our brains), and from fighting so hard to receive recognition, that I declined to the point of being wheelchair bound, unable to speak, unable to see, and shaking uncontrollably.
"But you look fantastic these days, what's wrong with you now? You just need to get over it and move on."
It sounds so simple to those who have never experience the trauma I have endured (and so many other PGCTs sufferers have had to endure). I am doing much better physically but mentally I am not okay.
Before brain surgery I fought! I came out swinging and despite the odds (and my physical disabilities) I kept a smile on my face to encourage those also suffering, "if I can do it - you can do it too!"
I knew the golf ball I felt in the center of my brain wasn't normal and it infuriated me to be mistreated by my medical communities, the way I was.
I never accepted their answers and I took on my old nicknamed "Spitfire" (which I inherited from a certain manager back in my Court Clerking days) because I would never back down from a fight, no matter the position of power the person held.
If I felt, or witnessed, someone abusing their position, bullying or taking advantage of the weak, or hiding behind their titles, I would stand up to them.
I couldn't help it - it's was a soul trait I possessed since I was a little girl (one I most certainly inherited from my father, LOL, as he was a scrapper back in his day).
But, since brain surgery my fighting has shifted, awareness is rising, and medical communities have taken a few black eyes from all of this publicity - figuratively speaking. Throughout my campaign to raise awareness, and also raise funds for my brain surgery, I received countless emails and FaceBook messages from fellow PGCT sufferers (from all around the world) telling me that I encouraged them to stand up and fight against this hypocrisy and not accept defeat. There is hope for a better quality of life, after-all.
Now that my physical battle is over (I beat the odds, rattled the chains of a corrupt government agency, got my surgery, and Praise the Lord - I survived it!) there is a new battle that has begun - the battle of my mind.
I'm tired, worn out, and exhausted... On one hand, I celebrate a victory of being 7 months post-op today, but on the other hand I feel disappointed that my healing and recovery (mentally) are taking so much longer then I had hoped.
I have taken a "time out" and I have let down my guard and allowed time to feel sorry for myself.
This new fight is within, an inner battle to "lie down and give up".
I would be lying if I said there weren't days I wish I never woke up from surgery - it would have been easier.
My battlefield of the mind is most certainly a more insidious battle than the one I endured prior to brain surgery, which I could physically see, touch, and hear.
At 7 months post-op I find these are my struggles:
1) I get exhausted and tired just thinking of doing simple tasks (e.g., feeding my fur babies, doing dishes, laundry, going for a walk with my pup, answering texts, taking a call, and some days, just getting out of bed);
2) I find myself crying for no particular reason and at the most odd of times;
3) I struggle to get out of the house. My home is my sanctuary where I am safe.
Safe, this is the crucial word here because mentally my safety has been shaken by years of being mistreated by family, friends, co-workers, bosses, and doctors due to a misunderstood/undiagnosed illness;
4) People. Yes, you read that right, people are a struggle for me:
a) Some people's voices cause me great agitation;
b) People moving their hands while speaking makes me frustrated;
c) Eye contact causes me tremendous discomfort and anxiety;
d) Conversations are infuriating when multiple people are talking at once or if music or TV are playing in the background;
e) Kids are difficult for me to be around because they are unpredictable (they scream, run, burst out into laughter and/or tears) which causes my heart to race, brain to fog, anger to rise, sweat to perspire, and anxiety to set in;
5) My fake period comes every 2 weeks or more as my hormones are balancing out and my body is adjusting to the removal of my Pineal Gland;
6) I don't feel useful and I struggle to fight off the feeling of laziness, everyday;
7) My cognitive skills come and go with exhaustion and neurofatigue;
8) Certain lights and sounds cause piercing pain;
9) My fibromyalgia is still very real; my muscles, joints, and skin hurt;
10) I get frustrated and angry for no apparent reason;
11) And this, this is where I am stuck! I am stuck here writing this story - every - single - time!
I have written and rewritten this story over 8 times and I can't seem to get past this point...
Now I am going back to bed, throwing the covers over my head, and enjoying the peace and quite of being alone.
This is not an uplifting blog, filled with hope and advice, instead it is a very real blog filled with my own personal feelings and struggles I am currently going through.
I guess the moral of this story could be, be patient and kind to yourself (if you have gone through brain surgery) and for those who live with or know someone who has gone through brain surgery remember, healing takes a lot longer then one thinks.
Don't expect us to be back to "who we used to be" and please, be kind, don't remind us of that fact. We know we are not the same and we struggle with that new reality everyday.
We mourn the loss of our old identities and we are working hard to establish new ones, with our new found limitations.
My next blog will be filled with more hope and helpful tips to get past these feelings but for now, this is me. This is my struggle. Let's get real folks - life isn't always peaches and cream.
And, it's okay not to be okay.
~ Lasha Barbosa
The PGCT & Mental Health Awareness Campaign
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