Hello Blog readers!
Went to the Michael Jackson Cirque du Soleil show the other night with my lovely wife. WOW! Blew my mind. Simply awesome! And the show was good too ;)
But this is not a show review...
I wanted to create a quick post to give an example of the dynamics between a couple dealing with a serious issue (such as a primary malignant brain tumour). Let's say the husband's name is "Tom" and the wife's name is "Nicole" ("Nic" for short). This cute couple dated for 3+ years before deciding they were ready to start their lives together. The husband got prepared to ask his girlfriend to marry him and picked out a date to do so. Meanwhile the husband and wife began to look for a place to live together. Then "life" said "WHOA! Hold on just a minute there!" Life (aka: 'Glioblastoma Multiforme' in this case) is a tough thing to mess with. It decided Tom and Nicole should have a more difficult time than they would have hoped in starting their lives together. It changed their short and long term plans quite drastically. It changed a multi-year engagement into a "as fast as we can" engagement. But I've already told that story...
What I wanted to discuss was the day-to-day lives Tom and his wife now deal with. The relationship they share is a wonderful thing they both cherish and enjoy deeper than either could ever express in words. The problem is that dealing with day-to-day problems becomes exponentially harder when brain tumours are involved (see also: terminal illness in general). Tom has taken on an approach that he should distance himself from Nicole to protect her from the feeling of loss should he "die tomorrow". He did not want any petty argument to be the last interaction they had for her sake. What he did not realize was that, while his intentions were good, what he was in fact doing was making Nicole feel more sad at times. She thankfully explained to him that she would rather have those petty arguments and at the end of the day feel closer to the husband she loved so so very much. In addition, she pointed out that having even "petty arguments" might lead to the underlying issues causing such arguments being resolved, thus creating a better overall marriage with LESS conflict in the days to come. Plus she pointed out that her husband had already promised to live forever so all of this was a moot point.
I'm not sure why I chose to speak in the third person above, but it seemed appropriate at the time. Back to the first person I go! I have found that most of my instincts to protect Nicole have caused her more harm than good. I used to avoid telling her if I was feeling "off" (for example of I had a headache) because I did not want her to worry about me at that moment. What this instead did, was cause her to lose any trust or faith in me in knowing that if I was suffering in any way I was unlikely to tell her. This lead her to constantly watch me for any signs that I was experiencing pain of any sort. She would ask me if I was alright 20 times an hour, to the point where I began to get frustrated that I was being asked so many times. She was correct however, in pointing out that if I was feeling off I wouldn't say anything unless she asked (if even then). I soon learned (as discussed in earlier posts) to be open and honest fully with her, treating the illness as "our illness" instead of "my illness". In a sense pretending she had a disease for which she could not directly "feel" any symptoms but instead relied upon me to describe to her fully and in detail what "we" were experiencing. Doing so lead to a much closer sense of "us" and less conflict in our relationship (not that there was a whole lot to begin with).
I now realize (thanks to Nicole) that consciously or unconsciously keeping my wife at a distance (by avoiding eye contact, rarely initiating conversation with her, or involving her in my 'daily plans') is definitely the wrong way to handle things. My thinking of "well I might be gone soon, so she should get used to this" is robbing her of the days we DO have together (not to mention my plans to live much much longer than just a few weeks/months/years). I don't know why I thought doing this would be a good thing... I think it just sort of "happened". I'm writing this now for the sake of any other husband or wife in a similar situation to perhaps bring about a pause in thought to explore whether they/you are doing the same?
A last topic for today will be our differing points of view. I am the "unrealistic optimist" while Nicole is the "down to earth realist". This causes a lot of tension in our marriage as it applies to my medical situation as I have a "don't worry... things will work out!" attitude. Nicole does not often share this sentiment. She has good evidence behind her point of view (as proven with my once stated "don't worry, I'll never get cancer or any other serious disease"). Admittedly I was a little off on that one. Our attitudes lead us to take different actions on the matter at hand. Nicole doesn't rely on a "things will work out" belief and thus puts much of the responsibility for my health and our future on her own shoulders. She is researching "Glioblastoma" information, research trials, news releases, and such almost every waking hour of the day (this includes the many hours she "should" be sleeping). I don't bother with too much of that (if any) and live day-to-day relatively stress free. Nicole meanwhile deals with 100% stress and 200% guilt thinking that if anything happened to me it would be her fault for not having done enough research or not having known enough about my cancer (despite the fact this is not possible for any human being). Alas, I must realize a marriage is a two person venture. I must for both her sake AND my own, take up doing much more research and become an active participant in my health and treatments. My social worker pointed out to me one day the flaw in my "things will work out" line of thinking. She accurately observed that "things work out" now because of Nicole and because I am married. I pointed out how stressed Nic gets when doing any trip planning and how I don't worry in the least as "things work out". My social worker asked "Yes, but would things still work out if your wife didn't put in hours of planning and research while you sat back and did nothing?" I hadn't quite thought of it that way until that moment. This goes for brain cancer research, trip planning, meal planning, and what to wear to the next wedding. I leave it to the day of on most of these things. Nicole, KNOWING I do this, plans much in advance as much for me as she does for herself (and the collective "we") and thus things do work out just as I always predict. So that means we're both right doesn't it? I think so ;)
Quick health update: I've had some weird eye twitchy stuff happening lately. My eyes seem to 'vibrate' very rapidly (very similar to when I have had seizures in the past) though not in a constant way. My medical team has adjusted my meds to see if it makes a difference. Again, the fear is that if I were to have prolonged seizure activity in my brain I could die from it. This eye thing started a few days ago, and I'm not dead yet, so odds are it's not intense seizure activity - if seizure activity at all. As per usual this stressed Nicole 800 times more than it does me, as I cannot see my own eyes twitching at all (my vision is as flawless as it was pre eye-twitching) however Nicole can see it when she focuses on my eyes (instilling a sense of fear/panic in her). Life must suck to be her. Hope you are all enjoying your Friday! Happy almost Halloween to you all eh?!
Cheers!
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Tom
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