The start of the new year has me trying two new treatments.
The first is medical marijuana which is prescribed for muscle spasms, stiffness, and for pain (though this is not one of my complaints). I have just started taking it so am not sure how it is working. It is only available on a private prescription and it is not cheap. I think that I would be better off financially if I bought a bag of the real stuff. At least I would get stoned out of the expense.
The above is only a treatment for symptoms but there is also the hope that it might have a positive effect on the nervous system and its ability to repair itself. There is at least one trial being run with this as the experiment. I figured it was worth a try for either reason.
https://www.mssociety.org.uk/cannabis
The other treatment is similar to the one that I started this blog with in that it is an immune system suppressor that is less toxic, and therefore better tolerated, than the Lemtrada which was decidedly NOT well tolerated two years ago. This one is injected over three days, and then again a month later, and then again in a year. There are a fair number of potentially scary side effects but there are not a lot of other alternatives for my disease so here we go again!
https://www.mssociety.org.uk/cladribine
My treatment started with some screening blood tests and then yesterday an MRI and a Lumbar Puncture to document my baseline. I also got the first injection yesterday, the second today, and the third will be tomorrow. The bad news is that this treatment is only offered at the Royal London Hospital which is all the way into the City of London. Hour and a half each way with normal traffic, two or more with rush hour traffic. Painful.
Lastly, and not exactly a treatment, but I have finally completed the application process for Dignitas in case all of this fighting MS does not work. It has been a bit of a grueling process to assemble all the documentation that is required but finally we got there. Getting doctors reports that included a prognosis that would support an end of life decision was decidedly difficult. My doctors would tell me that they would support me but I never felt like their hearts were in the game.
Note to the religious right. I get the whole sanctity of life thing. If you want to protect yours feel free. Leave me to deal with mine though. It is my bleeding life!
Thursday, January 19, 2017
Thursday, December 15, 2016
Current Status
My current status is pretty much summed up by the medical report that precedes this post. Not so good. Have just had a pretty bad relapse that has taken me that much closer to being in a wheel chair. This on the heels of a fairly heavy programme of supplements and diet management. So much for that hope!
Current Medical Report
What follows is NOT an actual medical report but rather a construction that I was hoping my doctor would use for such a letter. There seems to be some reluctance to help me with this process...which I can understand if that is truly the case. Right up to the point where it occurs to me that it is my damn life!
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Our mutual patient, Mr. Kostelecky, has requested that I provide you and he with a medical report in regards to his Multiple Sclerosis that contains substantial information about its diagnosis, history/development of the disease, treatments to date, current level of suffering, and finally a prognosis.
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Our mutual patient, Mr. Kostelecky, has requested that I provide you and he with a medical report in regards to his Multiple Sclerosis that contains substantial information about its diagnosis, history/development of the disease, treatments to date, current level of suffering, and finally a prognosis.
Diagnosis
According to medical transcripts Mr.Kostelecky was first diagnosed with Relapsing Remitting Multiple Sclerosis in 2000 by a Dr. Genut in the United States. When I first saw him in May of 2012 he was relatively stable with some secondary progression and an EDSS of 5.5 to 6. He is currently continuing a somewhat more rapid secondary progression and now has an EDSS of 6.5 approaching 7.
History and Development of the Disease
According to transcripts from Dr. Genut our patient first developed symptoms consistent with Optic Neuritis in 1995. In 2000 he was formally diagnosed with Multiple Sclerosis and in 2002 he suffered his first muscular relapse with a significant weakening of his right ankle.
By 2011, when he moved to the United Kingdom he had advanced to an EDSS of 4.5 to 5 using a cane to walk shorter distance and a powered scooter for longer. As stated above when I first saw Mr. Kostelecky in May of 2012 he had suffered ongoing secondary progression and was at an EDSS of 5.5 to 6.
I saw Mr. Kostelecky on the 04/12/2016 he had further advanced to an EDSS of 6.5 approaching 7. He constantly requires crutches for any walking and has episodes when he struggles even with crutches. He fatigues easily and suffers constant urinary incontinence. Balance is severely compromised and vision in his right eye is increasingly impacted as well with some periods of disturbed vision lasting hours. He has indicated that transition from bed in the morning is also becoming increasingly difficult. Most worrying to Mr. Kostelecky is the development of significant weakness of his arms and hands with the right being worse than the left.
Treatments to Date
When first diagnosed Mr. Kostelecky was treated with Avonex and then moved to Copaxone for ease of self injection. He was briefly off the Copaxone and moved to Fingolimod in 2011 but felt worse on taking it and moved back to Copaxone.
On moving to the UK he stopped the Copaxone in order to participate in the Ascend Trial for Tysabri. He developed some side effects, without apparent benefits and withdrew from the trial after a little more than a year.
In early 2015 Mr. Kostelecky had five infusions of Alemtuzumab in an attempt to slow the immune systems attacks on his mylen. There was some skin reaction, which is not unusual. His admission for treatment was prolonged, however, due to some blood abnormalities which were worrying but stabilized and allowed treatment to resume. Routine blood and urine analysis continues for tracking purposes.
Mr. Kostelecky does not feel that the Alemtuzumab had any positive effect. In fact he feels that he left the treatment with more of a disability than when he entered given that he moved from being able to use a single cane some of the time to needing crutches at all times. He has declined a second course of Alemtuzumab for this reason.
Mr. Kostelecky has also had a number of steroid infusions over the past years in an attempt to stabilize him after a relapse. He is unsure of the net benefit of these infusions, one of which was administered the first week of December in 2016. He will typically feel much better right after the infusion but will then degrade back to at or near where he was prior to the steroid being administered.
Early next year Mr. Kostelecky will be treated using an off-label drug Clabridine on a compassionate basis by The Royal London Hospital. This drug acts in a similar manner to Alemtuzumab but is better tolerated. It will be administered as three injections over three days and then, like Alemtuzumab, will be followed up in 12 months with a second treatment.
Current Level of Suffering
Mr. Kostelecky recognizes that he is lucky not to be experiencing any significant level of physical pain at this stage of his disease progression. He does suffer from severe cramping and muscle spasms and is extremely stiff in the morning and whenever moving after having been still for a period of time.
Prognosis
There is no certain prognosis for Mr. Kostelecky as we hope that either treatment by Cladribine is of help or, somewhat more wishfully, that the disease burns itself out on its own accord. Though the latter is rare it is a possibility.
Mr. Kostelecky’s understandable concern revolves around the disease progression continuing. If it does at the same pace as he has recently been experiencing he will be moving towards a point in time where he is left unable to care for himself nor to do any of the things that lend his life quality. This would be around an EDSS score of 8 to 8.5 which could be reached within one to three years.
Monday, August 22, 2016
Scientific Method be Gone Here
Am taking a more rigorous, and enthusiastic, approach to diet give that it is one of the few avenues open to me. Have retained the services of a nutritionist and have made some changes based on her advice...at least one pice of which most of our mothers would have advised. The latter being "Eat Your Vegetables!". In support of this latter decree we have gotten a nutribullet to augment my normal meals with a veggie smoothie every day.
The nutritionist has also started me on a regime of supplements (including mushroom therapy) designed to fight inflammation and we have done a food intolerance test. The food intolerance test came back with three foods that caused a distinct reaction (cow's milk, yeast, goats milk) and three that caused a moderate reaction (gluten, egg yolks, zinfandel grapes).
We have not met yet to discuss the results of the food intolerance test but I have cut all dairy products from my diet. Goats milk was not an issue! Yeast is a whole 'nuther matter as it is in everything. Will have to talk about this one. Our goal is to try to adhere to a diet that completely avoids some or all of the intolerance items for some amount of time in which results should be noticeable.
Here it becomes obvious that scientific method has gone out the window. We have a change of diet to include more vegetables, two streams of supplements, and avoidance of multiple food groups. Oh well.
The nutritionist has also started me on a regime of supplements (including mushroom therapy) designed to fight inflammation and we have done a food intolerance test. The food intolerance test came back with three foods that caused a distinct reaction (cow's milk, yeast, goats milk) and three that caused a moderate reaction (gluten, egg yolks, zinfandel grapes).
We have not met yet to discuss the results of the food intolerance test but I have cut all dairy products from my diet. Goats milk was not an issue! Yeast is a whole 'nuther matter as it is in everything. Will have to talk about this one. Our goal is to try to adhere to a diet that completely avoids some or all of the intolerance items for some amount of time in which results should be noticeable.
Here it becomes obvious that scientific method has gone out the window. We have a change of diet to include more vegetables, two streams of supplements, and avoidance of multiple food groups. Oh well.
Monday, August 1, 2016
Thinking About my Life and MS - Era 6 - 2012 to ----
The previous episode of this series did not actually mention MS other than the diagnosis. In reality the disease progressed through the entire period as can be read elsewhere on this blog. By the end of that "era" I was walking with a noticeable limp and starting to use a cane. Unfortunately the this era, from the point where we moved to the UK, is all about the disease and its progression.
We moved over in August of 2012 and rented a nice flat on the Thames in the town of Maidenhead. My wife knew the area that she wanted to live in and Maidenhead was a good place to start a home search. As I start to write this entry it has occurred to me that I really did not talk about what I did with myself when I left Black & Decker post their acquisition. While still in Baltimore I did look for a job for a while before deciding to just retire. Early retirement had always been the plan, this made it happen a bit earlier than planned but that was ok as well. I decided to try and retool my self back to the dawn of my career and developed a couple of websites. One for photography and one that was a development tool. I think they were both good ideas but the idea of selling and marketing things bores me.
When we moved to the UK I got interested in micro electronics and started developing software for the Arduino and for the Raspberry Pi. My test platform was a robot that trundled around the floor of the apartment controlled by a Raspberry Pi integrated with an Arduino. This led to a volunteer gig with the NHS to develop an instrument, based on the same technologies, to measure the recovery of heart disease patients. This led to 3D Printing and all of the above can be found in another blog here!
After a little more than a year we did find a new home and after successfully navigating Englands home buying process we were able to take possession, redecorate the place from top to bottom, and move in. The place did not have the spectacular view we had in Baltimore but it is on the Thames, has a beautiful garden, is large enough for our furniture (American), and most importantly has a man cave for me and my toys.
It is now going on five years that we have been here in England and things have been good though degrading on my health front. Each year it is harder to do the things that I would like to be able to do. When we first moved over we were able to explore the area restaurant scene, and we were able to travel to France a couple of times, as well as to Ireland, and to take a cruise down the west coast of Europe. All of these trips, however, were constrained by the logistics of my disability and not what I had hoped for in all the years that I had thought about, and looked forward to, living in the UK.
We also lost my wife's father to cancer in the past year. He had been fighting prostate cancer as long as I had known him but during that time it was in remission and he was able to lead a very good and active life. I remember talking to him about our respective diseases on one of their first trips to see us in the States. I told him, as I have told others, that I would rather have cancer than MS. With cancer there is a chance that it is not going to kill you and even if it does in most cases you can lead a full life until close to the end. With MS the progression of the disease is a constant drain from the quality of your life and the ability to enjoy that life. We were both committed to making the most of the rest of our lives but I think that he was able to do a better job than I given the nature of our diseases. His last year or so was painful and, of course, stressful for his family. When the end did come it was a relief. He did have a pretty darn good last ten years (before falling ill for that last stretch) as he and his wife were able to take four of five "trips of a life time"!
During this time my mother developed the first signs of dementia and the disease has progressed fairly rapidly. She still remembers me but did forget who her husband was. Ironic. This may have been a good thing though as it did make his passing much less painful.
The rest of my story is all about the disease progression and is talked about in detail through the rest of this blog. I came to the UK using a cane occasionally and am now using two crutches constantly and contemplating the transition to a wheel chair. Weakness of my upper limbs has now become very noticeable and my hands are impacted as well. I have failed to respond to some last ditch treatments and am not sure that I will make it long enough to take advantage of some new therapies on the horizon. In the meantime these "Eras of Will" are part of the documentation package that I need to apply to Dignitas.
We moved over in August of 2012 and rented a nice flat on the Thames in the town of Maidenhead. My wife knew the area that she wanted to live in and Maidenhead was a good place to start a home search. As I start to write this entry it has occurred to me that I really did not talk about what I did with myself when I left Black & Decker post their acquisition. While still in Baltimore I did look for a job for a while before deciding to just retire. Early retirement had always been the plan, this made it happen a bit earlier than planned but that was ok as well. I decided to try and retool my self back to the dawn of my career and developed a couple of websites. One for photography and one that was a development tool. I think they were both good ideas but the idea of selling and marketing things bores me.
When we moved to the UK I got interested in micro electronics and started developing software for the Arduino and for the Raspberry Pi. My test platform was a robot that trundled around the floor of the apartment controlled by a Raspberry Pi integrated with an Arduino. This led to a volunteer gig with the NHS to develop an instrument, based on the same technologies, to measure the recovery of heart disease patients. This led to 3D Printing and all of the above can be found in another blog here!
After a little more than a year we did find a new home and after successfully navigating Englands home buying process we were able to take possession, redecorate the place from top to bottom, and move in. The place did not have the spectacular view we had in Baltimore but it is on the Thames, has a beautiful garden, is large enough for our furniture (American), and most importantly has a man cave for me and my toys.
It is now going on five years that we have been here in England and things have been good though degrading on my health front. Each year it is harder to do the things that I would like to be able to do. When we first moved over we were able to explore the area restaurant scene, and we were able to travel to France a couple of times, as well as to Ireland, and to take a cruise down the west coast of Europe. All of these trips, however, were constrained by the logistics of my disability and not what I had hoped for in all the years that I had thought about, and looked forward to, living in the UK.
We also lost my wife's father to cancer in the past year. He had been fighting prostate cancer as long as I had known him but during that time it was in remission and he was able to lead a very good and active life. I remember talking to him about our respective diseases on one of their first trips to see us in the States. I told him, as I have told others, that I would rather have cancer than MS. With cancer there is a chance that it is not going to kill you and even if it does in most cases you can lead a full life until close to the end. With MS the progression of the disease is a constant drain from the quality of your life and the ability to enjoy that life. We were both committed to making the most of the rest of our lives but I think that he was able to do a better job than I given the nature of our diseases. His last year or so was painful and, of course, stressful for his family. When the end did come it was a relief. He did have a pretty darn good last ten years (before falling ill for that last stretch) as he and his wife were able to take four of five "trips of a life time"!
During this time my mother developed the first signs of dementia and the disease has progressed fairly rapidly. She still remembers me but did forget who her husband was. Ironic. This may have been a good thing though as it did make his passing much less painful.
The rest of my story is all about the disease progression and is talked about in detail through the rest of this blog. I came to the UK using a cane occasionally and am now using two crutches constantly and contemplating the transition to a wheel chair. Weakness of my upper limbs has now become very noticeable and my hands are impacted as well. I have failed to respond to some last ditch treatments and am not sure that I will make it long enough to take advantage of some new therapies on the horizon. In the meantime these "Eras of Will" are part of the documentation package that I need to apply to Dignitas.
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.
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.
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.
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