So now that I’ve had time to step away from my job, & the “hamster wheel” of life, I’ve started noticing more things about myself that I never really paid full attention to until recently….
I think this is good. Though I appear a certain way to people outwardly, I’ve had a lot of time to do some self-examination & exploration as a result of my transplant experience & I think it’s more positive than negative. I find myself consciously wanting to rid myself of bad habits, negative energy, & experiences.
Yes, I get stubborn & frustrated with myself sometimes; but much less so now, than in the past. I can seemingly let it go a bit easier. Maybe I finally feel I’m growing like I should be since I can do so unfettered & undistracted.
It’s hard too, because with a neurological disorder like tuberous sclerosis complex, it’s easy & of course understandable to try to explain personality traits (positive or negative) away as part of “hard-wiring in the brain or placement of tubers in the brain”. However, to a degree that may be true; but there’s no harm or law that says one can’t attempt to rise above it & at least attempt to rewire themselves (but slowly, patiently, & surely. Not using that “hard-wiring” as an excuse to beat oneself up, or remain complacent.)
Or perhaps, a few years of improv had helped me also become more aware of my inner feelings at least on a private level; (which is not to say it’s easy to translate that on stage for me all the time; though I try); but I feel I’m learning & finding my way through it anyway.
I’ve struggled at times in my improv to “play it real”, or play it only “semi-real” & show much of any vulnerability; unless I’m given an absolutely closed door safe space to do so. In fact, sometimes too, I misinterpret or don’t pick up on things & wind up on a different wavelength than my teammates. Yet I chose to learn from that & even when it happens it doesn’t necessarily not work.
It also appears that I’m having internal growth spurts right now as a result now looking back on my life without trying to obsess too much over what I’ve done “right” or “wrong”.
I see where my stoicism has impacted my life in not-so-positive ways at points because I felt it was a weakness to show much outward sensitivity; unless it’s around people I know well. To a degree it still holds true because while I am open about my experiences & finding my path along this journey with my diseases to help others, I can only divulge to a certain point & more about the medical aspects of the experience rather than how it actually made me feel & there’s merit in that too. Everyone needs a part of themselves kept to themselves for themselves.
When talking with a few other close transplant friends, I’ve told them that I’ve noticed lately that some of my senses appear to have heightened since I’ve been on oxygen 24/7 – sounds are naturally louder, words pop out, even colors seem more vibrant. It’s not all the time, but it’s with subtle things like freshly painted walls & a radio playing in a restaurant (for example).
May seem obvious but even my friends are ones to tell you when it comes to normal things like haircuts, I’m not very observant.
I also now can cry openly & easily over things I should be crying over, but then even movies or passages in books that I feel deeply. I would never admit this before or show it at all, & it took quite a bit to get me there.
I’m feeling things more intensely, having deeper conversations with friends.
Also – I tend not to dream often, but have had infrequent yet powerful dreams lately.
With setting my transplant goal recently, I’ve been able to envision myself doing it, even before it was firmly planted in my mind I would make it a goal.
I would be taken off guard by this, if it weren’t common amongst the post-transplant friends I’ve talked to because they’ve told me so.
In a way, I’m relieved & comforted by this because at first, it was a bit overwhelming & I was uncertain if I “should” feel it or even try discussing it with them.
Also, I don’t do this as an exclusion to support around me, just a curiosity of a kindred experience of someone who is on the other side of it.
I’ve even gone to taking some personality tests & exploring some other subjects I’ve been interested in or recently just heard about in my down time as I can & when I have the attention to process (slowly here & there). It’s comforting in a way.
I find that even though I am having occasional panic over situations, the after-effects don’t last as long as they did in the past & I’m bouncing back quicker & easier. I’m also being able to combat physical responses from being so overwhelming.
It’s weird for me to sit & here talk about any of this so openly, (much less put it words on a page in a blog), yet through my words & writing I feel compelled to… just in case there are others in “pre-transplant world” thinking they are somehow imagining it or temporarily going “crazy”.
I can’t explain why, but then as many of my close friends have said; maybe not everything HAS to have a concrete explanation. It can just happen.
I’ve never really hated myself per se, just had normal insecurities & foibles like most human beings, but I find myself easing up on myself over things I would in the past beat myself up over.
For the longest time, even in long held relationships with friends & family I often felt somewhat emotionally stunted & unsure of what I could do to show support back & sometimes would freeze or be perceived as less than genuine with my words or actions.
But maybe having enough time to think, (but not obsess) & doing more expressive & emotive hobbies in small chunks of time to break up my day now is allowing me to not feel that pressure. The pressure I put on myself when younger & healthier to appear “a perfect anything” and appear “not at all sick” (even when I couldn’t help it).
I firmly believe that timing is everything; however, maybe all the past “junk” I went through was just preparation & mental toughness training for this period of my life. I’m not sure. Truth be told, I am not concerned with whether it was or wasn’t.
I’m just glad that I have good support & good help along this journey now with gentle yet direct guidance (that I’m actually internalizing & heeding more easily) because I’ve been quite pleasantly surprised how I’ve attempted to adjust to all these rapid changes & try to learn from them now instead of feeling like I have to have all the answers & be in control of everything 24/7.
It’s funny because I felt at my last appointment, I had adapted the best I could & was struggling to see if I could adjust any further. I had doubted my ability to do so, but I’m finding that I was ignoring one key aspect then – my mental adaptability being equally or more important as my physical adaptability to these changes.
Admittedly, my quality of life isn’t what it was, but I am managing this without feeling bitter, overly angry, or a complete mess.
My mind, which often used to punish my body for not being able to keep up; is now silent in that regard or when it chatters – gives healthy pushing instead of negative feedback (bit-by-bit).
This is a reassuring as I know my upcoming listing (in November) will be a further test of patience which I have never felt was a strong suit of mine. Perseverance, yes. Patience, not-so-much.
We’ll see, but it does help validate this a little to know that even dark hours like this where I’m physically much weaker, personal transformations are possible & natural to have happen.
(I’m blogging about this selfishly for myself so I can look back in my archives on a day when I need a lift & see how far I’ve come through this journey even in the past few months. It’s a steep climb, but I’m doing it, step-by-step; day-by-day).
I just tease all my transplant friends that they should have warned me about this ahead of time….of course the skeptic & pragmatist may not have believed them…even if they did.
— It does not matter how slowly you go as long as you do not stop. ~ Confucius