The Big Scary Question Everyone Has….and Needs An Answer to…

We all have one. That thing in your life you constantly wonder about, ponder over, rationalize yourself in or out of again and again… It’s different for everyone – BUT yet the same. It drives us to live our life or change our life depending on where we are or what path we happen to be on that day. Sometimes that “thing” changes. Maybe it’s marriage, maybe it’s having kids or moving to a new country or getting a divorce… whatever the topic, it’s bigger than, “what color should I paint my front door,” or “should I let Sally go to the sleep-away camp this summer,” it’s way bigger than that. It’s about life-changing moments or things that, once decided, alter your path for good.
I am writing today about a change I have wanted to make in my life that has been plaguing me for almost 2 years now. The main problem is that i’m still just not sure what “it” is…. I just know it’s there – just under the surface – bothering me and screaming for attention…
There are moments when I think it is ridiculous that I even have to ponder this and then other times when it seems it’s insane, unreasonable, even immature and frivolous to consider doing it at all – whatever it is. After months and months of not being able to come to some conclusion that feels acceptable either way, I figure there has to be something to this situation worth looking into further. And so I put it out to the universe for answers, guidance, advice, help…
So – The back story and my quandry need to be rolled up into one since they are directly related to each other. I am happily (mostly) married for 10 years, one kid who is 14 (yes do the math = stepdad), House, Job, Cars, Family, Friends, Church, Hobbies, and fluffy/noisy dogs and kitties etc etc. We have all the normal stuff. The good and the bad (bills, broken stuff, crappy bosses etc)… I love all of it most days and some days I cannot find but maybe one or two things worth salvaging. That is normal, right? (that is not my question – kind of a rhetorical one really)… just trying to establish we have (or had) a normal life.
About 4 years ago my husband got sick. Like really sick. It was not cool. We were pretty freaked out. He was struggling to feel better and we were trying to figure out what this thing was, what could be done, when he would get better – yada yada. It was not one of those diseases folks know of or can understand or place in a box labeled Cancer, Heart Disease, HIV, MS etc… so it was (and still is) hard to explain to folks and for them to understand the ramifications (even for us). I don’t even like to try to explain it myself  so here is a picture of a Fusiform BA Aneurysm – sometimes images are better than words:
Over the next 1-2 years he saw a million doctors, lost a crap ton of weight (not that by doing so it would change the outcome, but the exercise seemed to help symptoms), ate better, meditated and learned to manage his symptoms so that they were milder and he generally could handle it. I was proud of him and impressed and yet kinda wondering if this was it… we just were always going to be waiting for the other shoe to drop while he fought mentally and physically to stay a few steps ahead of the inevitable? The answer to that was, yea, pretty much that’s what you have to do…
Over the next year or so while he was busy managing staying alive and keeping symptoms to where he could get out of bed and function like a normal person I was managing, well, everything else. I was (and I think still am) OK with that of course. I mean, geez – it’s the least I can do – right?! Keep “it” together so that he can keep himself together and we can all stay together in this little world we had built. We were hanging on to our (95%) happy little life (not counting the terminal illness of course) and good with it. That did mean though if something was financial, kid or household related I handled it. Plans for the weekend – I got it. Taxes- I got em’ done. Six figures of medical bills are ruining our credit and might make us lose our house – I can figure this out. Oh, and the 150 year old house is falling apart – I got this. Wait – The recession is causing furloughs and cutbacks and no raises – no problem – I can work my magic on our budget yet again. I handled everything and honestly, I think, even got busier with hobbies and school, volunteering, work, etc etc –  It was and is exhausting. But I believe that I needed and wanted that to be the case. I needed to feel like I was handling something as important has he was and that I was just as busy or even busier than him. I needed to keep busy and just put my head down and handle our life and whatever crisis was coming my way. That was my job in this partnership of keeping our life together. I mean really – what else was I going to do?!? He is fighting to stay alive and I am fighting for our life to stay together. Seems reasonable.
So within the guise of needing to “handle life” I keep having this nagging issue that I am NOT doing something important. I constantly bounce around as to what that is…. I need to go back to college and finish my degrees… I need to write a book… I need to quit my job… I need to focus on my child… I need a new volunteer project… I need… I need… I need to…. WHAT the heck do I need to do?!
Of course I see all the cliches and self-help book titles within my words…. You are ignoring the real issue. It’s not about you. Focus on your husband. You are in crisis mode and that is OK. You may not be the sick person but it is still happening to you… blah blah blah. I have contemplated all sides of this coin. I’ve read countless books and have seen counselors and have taken my daughter to see them too because we were worried about her and needed to focus on her well being just as much as ours. It has all been hard – but we are OK. We have been loved and supported by each other and our family (both mentally and financially) and friends. Both our jobs have been very wonderful at understanding and giving us the flexibility when needed for Dr. visits, sick time or just a mental health day when we needed it. We were very lucky in those respects. And I am very grateful for all of it! We still had tough issues. But they were more internal – like having to work through him feeling guilty for being sick and “putting all of this on me” (as if he could help it)!?! But those things were not giant “post a fundraiser on Facebook obstacles”… they were personal and private and we worked on it together and have done our best to just deal and try to move on.  I feel like have had every opportunity over the last 4 years to do something to fulfill this “need” if I could just figure out what “it” was that would fulfill me.
So now, I feel like we are through all of that initial crazy stuff that you go through when scary things happen to people you love. Now we are in a phase of, “OK – this is gonna happen – and probably sooner than later – but right now you seem OK – so let’s just live our lives and try not to think about it – but just wait out and still be ready.” Which is why I think I now have the time to step back and take a breath from the “keeping busy” part and say, “what is it I am really trying to do? And what is it that I really want?”
What I want more than anything, as I am sure you can imagine, Is for my hubby to be OK. And for all of this to just go away and us to get back to that 95% normal life we had 4 years ago. BUT that is not going to happen. We are where we are and it’s time to prepare for the next phase. So instead of running off on one of my latest “need-fulfillment-projects” maybe It’s time to just settle into what’s right in front of me. My Family. I mean, what’s wrong with just spending as much time as I can making my family my main focus. It’s not going to look like this forever. Even If my husband gets a crazy risky “in-clinical-trials” operation and survives it, and then eventually fully recovers… our family will never be as it is right now. My daughter will soon move into the independent phase of her life and my husband will no longer be “sick” so then I am guessing the expectation would be that everyone will just go back to normal busy working household status like the rest of the world. SO – isn’t this moment in time a unique opportunity to do something special? Something worthwhile – as a family – that the 3 of us will absorb into who we are as humans and remember forever – or as long as we are on this planet (and maybe afterwards – if you get to do that)…
To me the answer seems to be a resounding – YES!
But that is a very vague and big ambiguous scary undertaking. Where do you even start? What is the scale of something like that? How do you handle the stillness and quiet and peace of just being together as a family? Do we fill up our time with busy stuff together OR do we just cut everything back and do a lot of nothing – but together? And HOW? How do you make that change? People have expectations of you. Friends and Family and colleagues and project partners etc. etc… where do you even begin and how will you explain it? What will we do?
I’m really serious – what do we do now?!?!? My dilemma is that most of the time I think we should Just wait it out. But really?! Go to work? Clean my bathroom and weed my flower bed? Listen to some stupid problem at work or school that is mindless and pointless in the grand scheme of life?!?! Seems completely insane to go about doing our normal daily lives now. I guess when you get out of crisis mode and into “we are ready – but not really” mode you suddenly want to turn your life into the movie “The Bucket List” which then feels like we are just moving into another cliche surrounding people who are dying of a terminal illness. But we are not wealthy, or two old men on an adventure. We are still barely hanging on to our fragile little environment we built for the last decade and have held together for the past 4 years. There is no private jet to whisk us off to find his lost mother, or to jump out of, or to land us on a sandy beach somewhere to enjoy our time together…
So instead, each day my husband gets up and goes to a job for 10+ hours and does a crazy commute and I go to work and keep managing everything else (although we have gotten a little more balanced lately thank goodness and I have indeed cut back some on my “busy work “) and life – for now – just goes on.
I just find that to be insane! I mean what the heck are we doing?! Every day I want to scream “Let’s sell what little we own and cash out what little we have and go camp on a mountain for 3 months and fish in a big river and go to any place we have ever thought we might want to go! Let’s take our daughter on roller coaster rides and celebrate every birthday or holiday like it is the last one we will have together. Because, it might be true…. Isn’t that what we should be doing!?!”  Maybe I have seen too many Rom-Coms or read too many books from folks who “just woke up one day and decided to go live their life.” I mean, is it reasonable to even consider doing something like that or have I finally cracked up (that might just be my real question that needs answering by the way)? How the heck can we do that? Should we even do that? What should we do?!
BTW – I am not real good at “sort of,” or “start small and just go take a trip together,”  that seems dumb. We are not taking advantage of a promotion or an unexpected inheritance, we are talking about a person (my person) potentially leaving this planet forever and we don’t know when! It might be soon or it might be a couple of years from now – but it’s probably not going to be in our golden years – or even after our daughter reaches adulthood – SO a “vacation” does not feel like enough and yet ditching everything and riding off into the sunset seems kinda nutty as well. I just don’t know what to do and my husband, due to his “guilt” about the whole situation would resign himself to waking up in this Groundhog Day movie until the day he dies.
Personally – I just know we cannot do that – we have to do something to make a change that will allow us to relish our time and our lives together. I also know that if I figured it out and said “quit your job and lets go” he would happily do it – but he just cannot agree to it now because he cannot see how we would be able to manage it and does not want to cause any more trouble/stress/financial problems for me or our family! I know that is why he keeps going to work every day and pretending he is OK with that! I know he does not want the last years of his life to be sitting behind a desk staring at a computer screen. I just don’t know what to do or where to start in order to make this intangible choice – a path-altering, life-changing choice, that will move us into some other version of our life… Our Rom-Com version… I just know I am ready for someone to say “go” and maybe, if they can, help show me the way.


Our beautiful wedding November 2004.

Our beautiful wedding November 2004.

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