What I feel I've learned after today

[Daniel]

I began giving a damn about getting well on October 25, 2005 : I know this because that was the day my exercise record begun (I monitor progress and fluctuations due to season - machinery stiffens in winter time so results appear worse - expecting it by recording results makes continuity easier to achieve, I find). I began to exercise telling myself that doing so would one day make me well again and I'd boldly, like the hero in some movie, strut back into my old life with friends all holding a guard of honour as I celebrated a triumph over encephalitis. I rowed my arse off (literally, lost alot of weight), began to use the gym a few times a week, then every alternate day, then everyday, then every week day at 7 day intensity until I pulled it back to my present 3 day a week routine. I studied what I do convinced that each set of new vocabulary I remembered was a step back towards mental competency and achieving a returned memory would mean that I would almost be well again and these people would return to being my friends again.

This belief was my fuel to keep getting up and doing whatever I could in order to regain my own acquired understanding of how to feel comfortable again : by living up to the expectations of people I used to respect. Today, and 754 gym visits, 3 years after joining, later, and I find myself presently on the brink of normality : just a few things left to clean up, I'd say. Last night I received a text message out of the blue from the ex partner of a former friend : a nice lady and someone who I respect, but have nonetheless disassociated from. She wanted to catch up and see how I was doing and then it all came back : the insecurity of wondering if others were still my friends or not, wondering why my cellphone was not receiving messages, and I learned that my rehab routine, while now yielding progress far beyond any doctors prognosis, was also a medicative measure to take my mind of the insecurity and paranoia, the delusions of returning to see them like some cheesy movie scene - until then, my former ambitions had been forgotten and replaced with new ones of repaying the supersized debt of gratitude I owe my family by getting well, getting a job, and regaining a normal life possibly repaying them in the future when and however I can.

I kept in this ashamedly selfish mindset until not only this text message arrived, but also a phonecall two days ago from the hospital for my mother, from my grandmother speaking from her hospital bed after having suffered a mercifully mild stroke. Mum stayed so calm and collected after the call that it wasn't until my sister told me what had happened the next day that I finally found out how seriously altered my grandmothers health had become. Mum had put down the phone, neither indifferently nor as though she was deliberately trying to hide anything, just kind of like she had spoken with my grandmother at full health, as though nothing was wrong.

I'm ashamed to say that, after I found out that my nana had suffered a stroke, my initial thoughts which came before the grief at hearing such news were utterly and reprehensibly selfish. Brain haemorrhage has been my single biggest fear for years now and something I've fought daily with, convinced sometimes that going to bed on any one given night would be the last time I would, if not with any degree of near full cognitive function, then perhaps fullstop. I was told initially after encephalitis bad things about the similarities between it and stroke (or, at least, it was a fear driven connection I'd formed) and family have known all along that I'm terrified of this occuring in me and will stop at absolutely nothing (legally speaking) to prevent its manifestation. I wondered, for a brief moment, if mums initial reaction was to preserve my fears that nana having suffered a stroke meant it was now a part of my family geneology and, by having suffered encephalitis and gillain barre syndrome before that, I was perhaps destined for the same and didn't need reminding of that fact.

In my selfish pity, I held onto this theory and overlooked the blaringly obvious fact that mum simply had no ability to process the event or understanding of her mother (in her 80s) irrepairably changing.
The mother of an old school friend of mine (knew one another years and years back but she and mum remained friends after our friendship discontinued when we went to separate highschools) suffered a stroke about 10 years ago - a bad one, but she remains capable of assisted independent living and can even drive a car. Mum has remained her loyal friend this whole time and seen a side of brain injury which has made her come home from seeing this lady horribly distressed as the stroke victims mind has made her questionable more often than not, with smatterings of moments which make mum say something from time to time like :
"She still has her old sense of humour" - which I think is sad as, to me, it's like she (the mother who's suffered the stroke) has put on a mask like at some masked ball and hidden her real face, instead replacing it with a newer, less expressive, replacement which hides who she really is.
I see mums sadness at her friends poor health, her frustration at the lady only really understanding things a small percentage of the time, hearing the comments after they go to a movie together about how, "Eileen is so slow through crowds" - even though I know mum means no offense, she's just venting some frustration.

Point is that, when I learned what mum heard her own mother tell her about her health through the telephone on that day, I felt like mum now has three brain injured people in her life who she cares greatly for : the mother of my former friend who she's remained loyal to, her own mother who's health changed in a way which is undoubtedly 10x more sadening for her than I (and I'm grief stricken over it), and finally me : a man who has hints of stroke-like brain injury, but perhaps the only one with any possibility of reversing it (encephalitis being less serious, in my limited understanding).

I then understood the magnitude of what she will endure from day to day now on : her mothers degree of stroke was mercifully mild, I'm told, but her life has obviously been drastically shortened as a result. Mum will help her in any way she can for the rest of her days (undoubtedly, my parents are saints), while the mother of my former friend - who depends on mum as one of her closest friends now, lives nearby (just down the road) and needs mums companionship through her tough time also.
I was left in no condition after infection to look after myself and so I live with mum and dad,
and while being able to do so again (live alone after I find work again) seems imminent, I'm undoubtedly still a reminder to mum of these other two people in her life : someone she cares about who's become mentally impaired in some way. No matter where she goes (she also works as a secretary at the hospital) she's surrounded by illness.

I'm going to unavoidably sound like a mummies boy here, but I don't care if I do because this lady (mum), in my estimation, deserves a medal : nonetheless, when she put the phone down after that call from nana informing her of the health change, I saw mums heart sink a little - kind of like, 'Oh no, someone else I love has had their health changed' - and she didn't seem as much indifferent after the call, as much as she did vacant and numb - like she'd been slapped on the face but trying to keep her integrity nonetheless - it's only in hindsight that I see this now after having initially overlooked it and I realize that now she's been on the receiving end of 4 notification phonecalls : my former friends mothers stroke, my gillain barre in 2004, my encephalitis in 2005, and now nanas stroke in 2009 - I now wonder if she's contemplating when it will be her turn, as another friend of hers recently passed away of breast cancer, another overcame it, my brother has rheumatoid arthritis, and the list goes on : but surely your own mothers health irrepairably altering for the worse would be beyond a scare for anyone?

After sounding above like a mummies boy, I'm gonna supersize that somewhat by now making an online pledge to take back my formerly conceited self obsession at overcoming encephalitis for me, and do so determined to show my mother - the lady who travelled to Hong Kong to see me, then under the impression I might die at any moment but who remained positive and upbeat in all the photos I still have of that nightmare - that sometimes when the health of someone you care about changes, it can be reversed : and not just back to where it once was but 10 times better - this is the debt I feel is owed by me to her and dad - the bare minimum, and something I'm going to do, or die trying.

[Daniel]

With that above question posed (which I still ask of you) - I think the thing which got me down especially after hearing of my grandmothers health scare was just the time factor involved in something like that : here in NZ, a young boy of about 16 recently suffered a stroke and now his life is irrepairably altered by something which I, like I imagine anyone on this site, have now seen a great deal of - not through personal experience, but staying in a neurology ward allowed me a view of, not the occasional one or two hours which relatives have when they visit a loved one struck down by such a thing, but the hours around that time when I saw the poor old guy opposite me kinda just staring blankly out the window, and knowing that, in all likelihood, the difference between his emotional state (with a firm 'it will never get well again' label attached), and my own, was that I had a huge question mark hanging over my head - no one knew nor could say that I was definately and irrepairably brain injured, nor that it was fixable : in a way, that was an incredible motivation to do something about everything I then felt : get up, deal with being pissed at the world, ignore the constant wondering when things will get better again, and do the rehab. Don't-think-do, is a motto I live by for rehabilitation, and so far, so good.

Yet, when I think of the word 'stroke' and attach it to someone who I love, remembering not just how it effected that man opposite me in the first hospital I was in here in NZ (began in China), but a less effected stroke victim at the 2nd hospital before discharge, I see that so often there're two sides to the person who I witnessed : they were always vigilant and positively minded, communicative and enthusiastic around family, as if trying to proove that they were no where near as they appeared at the time. I admired that and think it must have taken a huge amount of courage on their part considering that when family left, they were still passionate about improvment, but tended to acquire this blank stare as they looked out the window, and I felt it must have been the worst thing for them to realise that they had lived through years and years more than I just to end up there in a hospital bed, verging on old age but not quite yet there, and being robbed of an enjoyable part of their lives. That's what I saw in their expressions as they stared out the window, yet despite that, they always appeared positive to anyone else and I saw improvment in their conditions before leaving the ward they and I were in. I took the memory of their, at least, visual resiliance (even if it wasn't inside them) and thought to myself, 'what right do I have to resent the world and resent others and hate this situation when someone with so much more life experience is lying in front of me and smiling in the face of adversity even when the smile seems only to be a facade when others aren't around?

The short answer is that I had no right to complain, and only the right to thank god I wasn't in the same boat, thankful that I at least had potentially positive uncertainty when they had negative definition.
I thought myself terribly insightful and intelligent in thinking this way when I reflected on that time and saw my own motivation and improvment as having stemmed from those poor guys I saw, but when I heard the now incorrect, but seemingly definite at the time, diagnosis of stroke attached to my grandmother, I saw things differently. She is a lady who has been there my whole life, attended birthdays and holiday celebrations, looked after us kids when mum and dad went on holiday, and is someone who I have the utmost respect for stemming from years and years of her undying love and devotion.

I thought on her and placed the same vacant look I'd seen on the faces of the men I'd seen in the neurology ward staring out the window, on her face, and the magnitude of a major health change seemed evident, how much resiliance and strength of character it must take someone to smile and put on a happy face for their visitors when their health is in such a way, is something I unreservedly respect and admire. I couldn't do that for the first few months of encephalitis. I recall staring blankly out the window in the Hong Kong hospital thinking in self pity, 'is this all I achieve in life? Is this how far I get after all I've seen in just my (then) 25 years of life?' - I cannot fathom how a thought like that must be for anyone, let alone someone who's lived longer, so when I see someone in undesirable health smiling despite that fact, I know they do so despite variables I'm fortunate enough to only have experienced a glimpse of, and it's why I was so saddened when I thought nana had experienced the same.

In my mind, smiling while with ill health extends a big middle finger to the illness itself, and is uplifting for anyone fortunate enough to see it.

[Daniel]

Hi Faith,
Great to hear from you again. I should just put this to rest first and foremost : an oversight which has been made is that my grandmother, not mum, was struck down with what we initially believed to have been an extremely mild brain haemorrhage. Mum said she sounded distant on the phone, her physical symptoms all pointed to a mild stroke, but after the scans of her brain were done, she had just temporarily succumbed to chronic fatigue. I thank god for that, and was astonished when I came home from work to see her car parked in the driveway, "What the hang?" I thought as I walked into the lounge and saw her chatting with mum : she looked tired, but I was astounded at how healthy she appeared considering the stroke. I kept my trap shut for the night and asked dad for the story after she left and it seems that the initial diagnosis was an incorrect one, thank god.

If I may comment on the health of your stepdad, and if I say anything insensitive here it's unintended, was his becoming confined to a bed something unexpected at this point or was he up and walking around one day, then not the next? My reason for asking this question is that I can't imagine how that must be to know someone has such an awful health complication, undoubtedly pray for improvment, only to see them slide further into a bad situation. We've never met, obviously, but just reading of such a thing is something I'm sad to read someone having to endure : not only for your parents, but yourself also.
I vaguely recall my grandfather passing away when I was very young (about 6), and I had no idea what was going on or what death was, why he was lying down and why family appeared so unhappy. I don't think it was until my aunt (mums sister) passed away of a blood infection (about 11 years old) that I began to appreciate what them not coming back actually meant - my family were incredibly proactive in euphemising the meaning of death, watering it down so that it wouldn't seem so painful for a kid to hear. I'm grateful they did that, because when I understood its meaning, it was hard to take on board and fathom that it was a permanent change, but the important thing is, I think, not learning about that alone, and you come across as an amazing mum and a strong lady to boot.

How are you coping with it, in your own words and if I may ask?

[faith]

Hi Daniel,
I hope your mothers strong faith will see her thru. Life can be so full of sorrow. I am currently watching my mother go thru losing her husband (my step father) to cancer. He has been bedridden for the last 3 weeks, and it has finally hit her that he is actually going. It is so hard to watch (not to mention my own sense of loss...he has been my father since i can remember i was only 2 when he and mum got married). i think in many ways it is easier for the person who is busy coping with the illness/affliction than it is to be the witness.
being a mother is a strange affair (possibly being a father is too, i dont know), it makes us capable of love we didnt think a person could feel, and strength that we didnt think we had.
and mother/daughter relationships are such complex ones... (so interesting and complex that i was doing my PhD on them)...
my heart goes out to your mum in this difficult time. and to you for having to witness her pain. i am sure she will value your being there. its a strange thing when our parents need us. and the world as we knew it when we were kids is turned upside down... the moments when they need to lean on us are so profound.
i will be thinking of you and your family.
faith