Thursday, July 28, 2016

Thinking About my Life and MS - Era 5 - 2000 to 2012

This era started with my diagnosis with MS but ended with it having been the best times of my life.  I guess that you could say that MS was both the worst and best thing that happened to me through my life.

I was a bit depressed on having been diagnosed with an incurable disease that would rob me of the ability to control my body over the coming years.  Things were not great at home, had been stressful at work (though not improving) and now this.  So I sought some help from a therapist.   I went to sessions with him for about a year, spent about the same amount of time on some mild anti- depressants, and came to some decisions.  Well, really one big decision and that was that I needed to really start living the life that I had to the maximum.  One life.  We each only have one life but when you are healthy it is easier to think about the things that you can do later than if you know that you only have limited time.  So one life it was.   I was even going to have that tattooed on my back in a chinese script but was afraid that I would end up with a 'tat that said "kick me" instead of "one life".

The big decision that came out of my new direction was to leave the marriage that I had been in for twelve years.   It was hard but neither of us was happy and I did not see us getting there.  This is where the boat that I mentioned earlier came in handy.  I had always kinda wanted to be a live aboard and this became my chance to do so.  A 32 foot sailboat is not a large boat to live on but I was able to adapt it so that it was pretty comfortable.   It helped that I was traveling a lot.  It also helped that a lot of crap did end up in a storage locker.  It is important to note that there are two extremes of live aboards...those that want to be ready to sale at any time and those that might sale once or twice a year.   I was in the former...if I wanted to go for an evening sail on coming home for work the boat needed to be ready.

During this time I had also taken up rock climbing and was doing a lot of that.  I was, as mentioned above, traveling a lot and was able to taking advantage of trips to stay extra time to explore places.   The biggest initial change in my life, though, was the community that I became part of as a live aboard.  I had met and was friendly with folks in the marina but when you live on a boat next to them your bond becomes much closer!  We had a lot of fun together sharing meals, doing evening and weekend sails, going out into Annapolis and causing trouble.  Great memories.

It was also during this time that I was promoted to Vice President at Black & Decker as part of an IT organization that did some pretty good work, if I do say so myself.  My boss, our CIO, was able to build a team that worked well together and was able to do so over a pretty long time relative to most IT organizations.  We had some ups and downs, we being any two of us in the organization, but over the years we built a record of implementing the things we said that we would implement, doing it on time, and within a budget.  All of this while also responding the the business's need to take operating costs out where ever possible.   It was at the end of this period when my boss and mentor retired and I was able to move into his office.  The next three years of my professional life were to be interesting.  It was 2008 and the economy went south.  Then, as a direct result of that shift, Black & Decker got bought by Stanley Works.  So I got to lead an organization through a financial down turn, which I had done pretty well (if I do say so myself), and now I was on the hook to help it get through an acquisition by a company that had markedly poorer systems and an egotistical IT leader.  I was able to positively influence the absorption of my organization into the new company without significantly damage to our capabilities but I was left without a job.  I had planned on retiring early...this just made it a little earlier than I had planned but all was well.

Oh, just about forgot, I also met, fell in love with, and married, someone during this time!  No, I did not really forget.  I was just saving the best for last!  I was living on my boat, I was in the UK a lot, and I fell for someone that worked in the London office.   We started dating, our first trip was together was to Spain where I lost a bet that we would be able to find a Thanksgiving Turkey Dinner in Madrid (ironically, the day after Thanksgiving we found an Irish Pub that did have that dinner on offer but it was too late for my bet).  It was the first of a number of great trips that we would take together.  She ended up moving to the States (though it had nothing to do with me) and we bought a beautiful place together on the Baltimore Harbor.   I had bought a new, and larger, sailboat to live on in 2003 and we took a number of memorable trips on her.   One was during cicada season and to these stupid bugs our boat must have looked like an island as they constantly dive bombed us as we motored down a river to a planned anchorage.   I had gone below and noticed the boat was weaving about madly.  I went to see what was going on and it seems that Sara was fighting off bugs and not paying a lot of attention to the helm!  We got married in November of 2006 at a ceremony in England.  I had asked her on a holiday in Vail Colorado the previous April though at the time I did not realize what day it was.   We had eaten dinner on the top of a mountain and on the ride down, with the lights of Vail shining below the gondola, I had intended to ask her but chickened out.  I finally got up the nerve once we were back in the hotel but it was after midnight at that point.   And it was April 1st.  April Fools Day.   Hmmm.

These were the best years of my life.  I guess you could say that MS has been both the worst and best thing that has ever happened to me.

Thursday, July 21, 2016

Sins of the Fathers

I am nearly sixty years old and much, much closer to the end of my life than to when my father, the adoptive one (now referred to as JRK), was a factor in my day to day life, yet he haunts me still.  From the grave now as he passed away this week.

His funeral will be a small one as he had few, if any, friends and was not part of any social circles.  I won't be there due to my ever increasing disability.  If my mother remembered her husband I might feel the need to try and make the trip but it would be brutal ... especially given the time of year and the weather in the US right now.  Luckily for my Mom (and I) her dementia seems to have wiped the memory of JRK from her mind.  I think this is saying something...and that he was the first long term memory to go, and to go pretty much completely, says it all.

Sadly my only regret in his passing has been that it was not soon enough that my mother to have enjoyed the last years of her life.   She was held back in many ways by the "guy who sat at the end of the table" as she now refers to him when a glimmer of memory surfaces.  Held back from doing things, held back from traveling, held back from having a loving relationship.  It is water under the bridge at this point and it was her decision to stay with him through all the years of abuse and rancor.  I never understood this and now never will as her mind is now in the day to day...and at least this week that is not a bad thing.

My mother in law called to talk to me about his passing.  It was a little awkward as she knows the kind of relationship that I had with him.  Particularly awkward given the recent passing of her husband who was a truly good father and good man in general.  His funeral service suffered from the opposite of scarce friends as it was standing room only.  I cried at his passing and I still think of him often.  Yet when Sally asked me about JRK, that surely he had some good points, I struggled to come up with them off the top of my head.

Ironically, when I got the funeral announcement that my brother and sister-in-law put together it did make me sad.  He was human and was a huge part of my life whether good or bad.  He was also the father to my brother and sister and a companion to my mother for fifty years.  He could be charming, even entertaining, and he was always there with a story though as he got older the stories seemed to get repeated more and more often.  I think my best memory of him might be the story about the sandwich with the onions on it.  This will only make sense to my family and any one that knows my brother and how much he likes onions.  He was passionate about woodworking, he loved his dog(s), and he was as staunch a republican as the party of the elephants could hope to have.  He was equally passionate about FOX News and of course he could never have too many sports channels.

I still struggle, however, to remember him in the context of good memories from the ten years between when he adopted me and I emancipated myself from him.  I know there must have been some but they are just not coming to me.  The bottom line is that this does not matter.  His influence on me was large for better or for worse and it may well have been for the better in the long run.  It was my desire to emancipate myself from him that helped motivate me to get my first job with computers.  I guess you might be able to say that I owe my career and its success to him?

In closing I will acknowledge that it might seem a bit immature of me to so adamantly refuse to address him as "Dad".   He was my adoptive father and I addressed him as a father for many years.   Somewhere in the more recent past I decided that he had not earned this right from me simply by virtue of signing some papers.  I think that he did this just to make my mom happy as I also think that she married him for me...because the mores of the time insisted that a boy growing up needed a father.  Maybe I should feel guilty about this.

In any case, my refusal to call him Dad does seem a bit immature but what the hell.  I earned it.  It does not change the fact that I have a brother and a sister from the relationship or diminish their brother-ness or sister-ness.   The are close enough to me that the stress of their relationship is my stress.  The last legacy of JRK that I will mention is the impact that he had on his natural born children.  He scarred them and it has manifested itself in behaviors from the two of them that prevent them from being able to get along as brother and sister.  The reasons go deep and the scar tissue goes back decades but I hope that they can get past it.  I think they both could use talking to someone that can help them repair the legacy that JRK has left them.  It would be a shame if they could not.

Saturday, July 9, 2016

Sometimes it is Hard not to be Depressed

Depression, obviously, goes hand in glove with MS and probably any terminal (or not terminal in the case of MS) disease.  I think that I do a pretty good job of keeping it at bay by keeping busy and by keeping in denial.   Sometimes the latter is hard to maintain.  

The other day some of out neighbors rode by on their bicycles headed for the pub in the village next door.  It caught me at a bad moment and I just about broke down.  There are so many things that I can not do and sometimes it makes me angry to see people doing them.  This time it just made me sad.  

Life is not fair some times.  I try to make the best of what I have left and know that it is going to continue to get harder and harder.   At some point, it is going to be too hard and the quality of life too low to put up with.  Hence the pile of paper work on the floor of my office.   Medical records that are part of the submission to Dignitas that will allow me to choose the time when my disease takes me.  I would rather do this without traveling to Switzerland but the politicians in the UK are as bone headed on this issue as those in the US. 

I will continue to hope for the best but the realist in me sees a path with few options and an inevitable conclusion.  But a far better conclusion than being bedridden for years with zero quality of life.