People talk to me; they say all kinds of things to me. Most of these things are the ordinary exchange of pleasantries and typical conversations of daily life. Sometimes, however, a friend or family member will say something powerful, something that strikes a chord or settles heavily on my mind. The risk for these people is that their wisdom will show up here in my blog. For that I do not apologize; wise words are meant to be shared.
This happened today. One of the members of one of the many online ALS groups to which I belong made a comment, something that just slammed into me and stuck. She was talking about the frustration she felt when speaking with doctors about ALS, the distress of knowing there was nothing she could do; she is not a PALS, she is a friend of a PALS. She said "With ALS, it's like the world is saying, yep it's ALS... (he) has repeatedly said the doctors are saying your (sic) just points on a graph now." I can truly relate to that frustration.
It is not just the patients who are frustrated by this. One of my many neurologists expressed a similar frustration last month when I was at the ALS clinic. He said "Twenty years and there have been no advancements; twenty years and nothing." This disease has to be tremendously frustrating for doctors who are used to giving solutions, providing hope and offering treatments. Trust me, it is just as frustrating for me.
There are two places to go with this frustration. One is to take it to anger; the other is to go to acceptance. I suspect all People with ALS end up in both places at some time or other. Regardless of religion, faith, or mindset, this disease works so insidiously as to leave every affected person stunned, without a handle to hang on to; you just have to live with it, nothing else. Whether patient, family, friend or co-worker, no matter who you are this disease will touch you and leave you feeling helpless.
Yesterday a Person with ALS in one of my online groups talked about a depression and suicide. When faced with a situation where your doctor simply says go home and do nothing, where the only thing they can do is collect points on a graph, virtually every one of us will become depressed. Add to that the depression that is a side effect of some of the medications and you have a perfect scenario taking action to end it all.
There is but one thing to do in the face of all this; wake up, breath, eat, and keep going. It is almost impossible some days; most days it is merely difficult. On those rare, sweet days when the light shines and the clouds lift, on those exceptional days when life seems possible no matter how short, then you get to live. On these days you are more than points of a graph.
Wednesday, 31 July 2013
Tuesday, 30 July 2013
Marriage
I am thinking about marriage this morning. One of my online PALS is celebrating his 19th wedding anniversary today. To him I say, congratulations and may your future be blessed. That may seen strange given the future of ALS patients. I have noticed something with this cohort. ALS patients in good relationships do better, have more energy and more enthusiasm for life, and generally seem happier. No surprise there in that almost all research shows that people in happy marriages are generally happier in life.
Marriage has been around a long time. Anthropologists and archaeologists have found evidence for the existence of pair bonding all the way back to pre-historic times. Marriages are documented in ancient Egypt and the concept of marriage is almost universal within human beings. The nature of marriage changes over time but the idea of two people in a committed relationship has been with us a long time.
From ancient times to medieval times, particularly in the western world, formal marriage, contractual marriage, has only existed within the ruling class. It was used as a way to manage the transition of wealth across generations and a way to build and consolidate power. For us little people, the normal people, marriage did exist but in many cases without any formal recognition. Men and women took up together, engaged in some sort of simple ceremony such as jumping across a broom or such thing, and they declared themselves to be married.
It wasn't until 1563 that the church got involved in the marriage business. The Council of Trent, sensing sin in every corner, decreed that marriages must be performed by a priest, with the appropriate payments to the church, and in the presence of at least two witnesses. It took the Catholic Church in western society to turn marriage from a relationship between two people to a contract before God and a revenue generation tool for Rome. Love, faith, and commitment had nothing to do with it.
In truth, marriage means nothing; it's just a contract. Like all contracts, it can be broken. The sanctity of marriage is simply a church bound control mechanism to ensure conformance, compliance and control. The reality is that marriage isn't about the contract, nor should it be about God. Marriage is about two people in a relationship. All that other mumbo-jumbo simply complicates things.
This is not to say that I don't believe in marriage. I do. I believe it so completely that I stayed in a bad marriage far too long just to comply with that belief set. What I now realize is that any marriage that survives is first and foremost about the relationship; ours was not a good one. Without a good relationship between the parties in the marriage, be it two or three or more, same sex or other, there is no marriage; it fails.
Marriage works when relationships work. No matter what form, contract, or display we put over it, the committed relationship of marriage is important. Whether it is traditional, church sanctified, or simply a couple of people jumping over a broom, marriage is here to stay and so it should be. We just have to keep the relationship part as more important than the contract part. If a marriage is bad, end it sooner rather than later. When a marriage is good, fight for it, treasure it, and keep it as secure is your most precious treasure. After all, that's what it is.
Marriage has been around a long time. Anthropologists and archaeologists have found evidence for the existence of pair bonding all the way back to pre-historic times. Marriages are documented in ancient Egypt and the concept of marriage is almost universal within human beings. The nature of marriage changes over time but the idea of two people in a committed relationship has been with us a long time.
From ancient times to medieval times, particularly in the western world, formal marriage, contractual marriage, has only existed within the ruling class. It was used as a way to manage the transition of wealth across generations and a way to build and consolidate power. For us little people, the normal people, marriage did exist but in many cases without any formal recognition. Men and women took up together, engaged in some sort of simple ceremony such as jumping across a broom or such thing, and they declared themselves to be married.
It wasn't until 1563 that the church got involved in the marriage business. The Council of Trent, sensing sin in every corner, decreed that marriages must be performed by a priest, with the appropriate payments to the church, and in the presence of at least two witnesses. It took the Catholic Church in western society to turn marriage from a relationship between two people to a contract before God and a revenue generation tool for Rome. Love, faith, and commitment had nothing to do with it.
In truth, marriage means nothing; it's just a contract. Like all contracts, it can be broken. The sanctity of marriage is simply a church bound control mechanism to ensure conformance, compliance and control. The reality is that marriage isn't about the contract, nor should it be about God. Marriage is about two people in a relationship. All that other mumbo-jumbo simply complicates things.
This is not to say that I don't believe in marriage. I do. I believe it so completely that I stayed in a bad marriage far too long just to comply with that belief set. What I now realize is that any marriage that survives is first and foremost about the relationship; ours was not a good one. Without a good relationship between the parties in the marriage, be it two or three or more, same sex or other, there is no marriage; it fails.
Marriage works when relationships work. No matter what form, contract, or display we put over it, the committed relationship of marriage is important. Whether it is traditional, church sanctified, or simply a couple of people jumping over a broom, marriage is here to stay and so it should be. We just have to keep the relationship part as more important than the contract part. If a marriage is bad, end it sooner rather than later. When a marriage is good, fight for it, treasure it, and keep it as secure is your most precious treasure. After all, that's what it is.
Monday, 29 July 2013
Disappearing Relationships
It is a slow morning this morning. I sit in my chair, stare out my window, watch the flat grey under-surface of a clouded sky, slit here and there into strips of white and even blue now and again. It is that kind of easy start to a day that I need now and again. I have little planned for the day, only a lunch date with a friend.
It is an interesting phenomenon, this friend thing. This particular person is someone I used to work with. There are a couple of past-work people who have made it a point to keep in touch with me. It is one of the most interesting things for me, that these two people, two people with whom I had great struggles in my work like, turn out to be two of the most reliable, strong and helpful people as I work through the struggles of my daily life.
I am not alone in this experience. Just a few days ago another one of my PALS (Persons with ALS) commented on how surprising it was to her that people she had expected to be with her through her illness had completely failed her yet people whom she barely knew, or expected little of, had reached out and become solid and powerful helpers and supporters. I see this theme a lot in my online ASL groups.
Another of the PALS I know commented the other day on her marriage. It was failing when she got her diagnosis and failed completely thereafter. This is not an uncommon story. Relationships that are thin and weak disappear completely under the load of this awful disease. Troubled marriages crumble. Even seemingly strong marriages buckle under the weight of an ALS diagnosis. It takes tremendous courage and commitment to stay when the work and outcomes if this illness are so all encumbering.
Of course you expect family to stick with you. Yet even in this there are tremendous challenges. Siblings and children have their own lives to live. Young children depend on you; it cannot be the other way around. Teenagers and young adults are "doing their own thing". In most cases parents are either gone or aging, unable to help. Where they are, they do, tremendously. I know this to be true. Still, particularly with aging parents as mine, you cannot ask them to do what needs to be done; they simply cannot do it.
I envy those who have loving partners in their lives who give all to make the last days of a Person with ALS the kinds of days worth living. That is a very special person, a rare treasure. For the rest of us, in the end what you learn is that, in most cases, if it is to be done it is up to you to do it.
It is an interesting phenomenon, this friend thing. This particular person is someone I used to work with. There are a couple of past-work people who have made it a point to keep in touch with me. It is one of the most interesting things for me, that these two people, two people with whom I had great struggles in my work like, turn out to be two of the most reliable, strong and helpful people as I work through the struggles of my daily life.
I am not alone in this experience. Just a few days ago another one of my PALS (Persons with ALS) commented on how surprising it was to her that people she had expected to be with her through her illness had completely failed her yet people whom she barely knew, or expected little of, had reached out and become solid and powerful helpers and supporters. I see this theme a lot in my online ASL groups.
Another of the PALS I know commented the other day on her marriage. It was failing when she got her diagnosis and failed completely thereafter. This is not an uncommon story. Relationships that are thin and weak disappear completely under the load of this awful disease. Troubled marriages crumble. Even seemingly strong marriages buckle under the weight of an ALS diagnosis. It takes tremendous courage and commitment to stay when the work and outcomes if this illness are so all encumbering.
Of course you expect family to stick with you. Yet even in this there are tremendous challenges. Siblings and children have their own lives to live. Young children depend on you; it cannot be the other way around. Teenagers and young adults are "doing their own thing". In most cases parents are either gone or aging, unable to help. Where they are, they do, tremendously. I know this to be true. Still, particularly with aging parents as mine, you cannot ask them to do what needs to be done; they simply cannot do it.
I envy those who have loving partners in their lives who give all to make the last days of a Person with ALS the kinds of days worth living. That is a very special person, a rare treasure. For the rest of us, in the end what you learn is that, in most cases, if it is to be done it is up to you to do it.
Sunday, 28 July 2013
Handle With Care
I am surprised these days at how easily my emotional balance is set off. Things that would just wash off me in the past suddenly become frightening. My internal resistance to fear is weakening, almost everything scares me. Every challenge seems higher, harder, more difficult. It's as if my emotional strength was weakening at the same time as my body.
It shouldn't be a surprise to me. My emotional reserves, like my physical reserves, are pretty much shot. The disease itself is well known for creating emotional instability. It's something called the pseudobulbar affect (PBA). It's also known as emotional lability, labile affect or emotional incontinence. Physiologically it is a neurologic disorder with involuntary crying or uncontrollable episodes of crying and/or laughing, or other emotional displays.
In other words, not only do I get the emotional stuff that goes with the loss of my abilities, my freedom, my life, but I also get some sort of physiological impact too! We all go through periods of emotional stress; it's just a part of life. Like everything else with this damnable disease, this normal part of living is ramped up to a new level with ALS, and not in a good way. Emotional stress, like any stress, just makes it worse.
It means I have to work a lot harder at managing my emotional responses to things and that leads to emotional exhaustion, and that leads to, well, all kinds of things. Interestingly enough, anger is not my biggest problem even though I get angry at times. My biggest problem is that the things which used to make me feel threatened loom even larger, look even bigger. It takes more emotional energy to sort them out, to respond to them in a way that makes sense.
I need some way of letting people know that in addition to dealing with every day issues and life challenges, I have this additional load to bear, a load that is invisible unless it becomes unstable. Just as my body needs special care these days, so do my emotions. I need a "Handle With Care" sign on my life. Then again, maybe we all need one.
It shouldn't be a surprise to me. My emotional reserves, like my physical reserves, are pretty much shot. The disease itself is well known for creating emotional instability. It's something called the pseudobulbar affect (PBA). It's also known as emotional lability, labile affect or emotional incontinence. Physiologically it is a neurologic disorder with involuntary crying or uncontrollable episodes of crying and/or laughing, or other emotional displays.
In other words, not only do I get the emotional stuff that goes with the loss of my abilities, my freedom, my life, but I also get some sort of physiological impact too! We all go through periods of emotional stress; it's just a part of life. Like everything else with this damnable disease, this normal part of living is ramped up to a new level with ALS, and not in a good way. Emotional stress, like any stress, just makes it worse.
It means I have to work a lot harder at managing my emotional responses to things and that leads to emotional exhaustion, and that leads to, well, all kinds of things. Interestingly enough, anger is not my biggest problem even though I get angry at times. My biggest problem is that the things which used to make me feel threatened loom even larger, look even bigger. It takes more emotional energy to sort them out, to respond to them in a way that makes sense.
I need some way of letting people know that in addition to dealing with every day issues and life challenges, I have this additional load to bear, a load that is invisible unless it becomes unstable. Just as my body needs special care these days, so do my emotions. I need a "Handle With Care" sign on my life. Then again, maybe we all need one.
Saturday, 27 July 2013
Victory
ALS is not a disease of location. It doesn't just happen here; it didn't just happen to me. There are people from all over the planet who struggle daily from the damage of this debilitating disease. As a member of a number of online ALS groups, sites such as PatientsLikeMe and Living With ALS, I see posts from every country and continent on the planet. This is a global disease with global impacts yet most of us hear so little about it.
We all know of the famous with ALS, people like Steven Hawking and Chairman Mao. What we don't know are the stories of the thousands of men and women young and old, living lives of struggle and challenge, defeating the darkness and despair that goes with this disease. What we don't hear are the stories of support, caring, giving and loving that make up these lives. They are there, waiting to be written and read.
You will hear about Steve Gleason, Catfish Hunter and, of course, Lou Gehrig. What you are less likely to hear is the story of a young man in Queensland, Australia named David. He was diagnosed as a teenager and recently passed away in his late twenties. He struggled with this disease for his whole adult life, short as it was. You won't hear his story because he is not famous. He, like many of us, was simply part of the ocean of humanity and this is how we die. It takes fame to shine light onto this disease and unfortunately this disease is sufficiently rare that few of the beautiful people are touched by it and even fewer are afflicted with it.
I see the stories of so many ordinary people struggling with this affliction, people who lead normal lives until normal is ripped away from them; a single Mom in BC, a teacher in New York, a geologist in Scotland, a child in Japan, David in Australia. The single, dominant theme I see in virtually all of these stories is the will to live and the forced acceptance of the damage of this pestilence. I hear the stories of their fight, their battle, their small victories in their larger personal war.
The stories of victory are not of cure, but of victory in daily living. It is a battle of honour, dignity and courage. It is not a battle to win for ultimately life claims us all. It is a battle to stay, to live as long as you can, to live fully, joyously, happily. It is a battle won, not with a climactic armageddon but with daily and sometimes hourly victories over this disease. You win this battle each day that you live, love, and laugh.
We all know of the famous with ALS, people like Steven Hawking and Chairman Mao. What we don't know are the stories of the thousands of men and women young and old, living lives of struggle and challenge, defeating the darkness and despair that goes with this disease. What we don't hear are the stories of support, caring, giving and loving that make up these lives. They are there, waiting to be written and read.
You will hear about Steve Gleason, Catfish Hunter and, of course, Lou Gehrig. What you are less likely to hear is the story of a young man in Queensland, Australia named David. He was diagnosed as a teenager and recently passed away in his late twenties. He struggled with this disease for his whole adult life, short as it was. You won't hear his story because he is not famous. He, like many of us, was simply part of the ocean of humanity and this is how we die. It takes fame to shine light onto this disease and unfortunately this disease is sufficiently rare that few of the beautiful people are touched by it and even fewer are afflicted with it.
I see the stories of so many ordinary people struggling with this affliction, people who lead normal lives until normal is ripped away from them; a single Mom in BC, a teacher in New York, a geologist in Scotland, a child in Japan, David in Australia. The single, dominant theme I see in virtually all of these stories is the will to live and the forced acceptance of the damage of this pestilence. I hear the stories of their fight, their battle, their small victories in their larger personal war.
The stories of victory are not of cure, but of victory in daily living. It is a battle of honour, dignity and courage. It is not a battle to win for ultimately life claims us all. It is a battle to stay, to live as long as you can, to live fully, joyously, happily. It is a battle won, not with a climactic armageddon but with daily and sometimes hourly victories over this disease. You win this battle each day that you live, love, and laugh.
Friday, 26 July 2013
Forward Motion
I awoke again today thinking "Why bother?" Do you know how many days I wake up with this feeling, this thought, this sense of the pointlessness of all of this? A mere six months ago I was a dynamic man with a great job, a man with places to go and things to do. Now I am idle, purposeless, simply existing and taking up space until either my disease takes me or I take myself.
Before anyone gets afraid, I am not ready to go yet. This is not a suicide note, not by any stretch of any imagination anywhere. It is me noticing the changes in my life and how unfocused it has become. I have always needed something to focus on. When, in the past, I would finish a project it was not unusual for me to go into some depressive funk, easily attributable to the lack of something on which to focus.
The problem is that now there is no hope of another project, another focal point. There are those who would suggest that I go volunteer, that I do something for other people, that I gain satisfaction through giving of myself and my remaining days. That seems like a good idea on the face of it. My challenge is that I don't know what to give or who to give it to.
I don't have the energy or ability to do what I used to do, to do what I know how to do. It takes so much energy and work for me simply to go through my day. The "activities of daily living", that's the term the medical and professional community uses for what I do each day, absorb just enough of my energy to leave me with little more that the motivation to read or watch TV all day. The work of getting up, getting food, getting dressed, all these gettings leave me wanting, wanting for energy and enthusiasm.
Perhaps my focus should be on just getting through the day; I can do that easily enough. Perhaps my focus should be on finding something to focus on. One option would be to volunteer with the ALS Society, except then I will be surrounded not only by my own disease but by the frustration, pain and struggles of every other ALS patient in Alberta. Another option would be to find part time work, something to keep me focused and busy yet not so busy as to wear me out. There are options; I know this to be true.
First I need to focus on what to focus on. The rest should come together after that. My first step, as it always must be, is to put my left foot in front of my right, metaphorically since walking is something I no longer can do, and move forward somewhere, somehow. Maybe that is why I keep wanting to get away, go on a road trip or a boat trip. It is motion. I wonder what I will do when I can no longer get away? What motion then?
Before anyone gets afraid, I am not ready to go yet. This is not a suicide note, not by any stretch of any imagination anywhere. It is me noticing the changes in my life and how unfocused it has become. I have always needed something to focus on. When, in the past, I would finish a project it was not unusual for me to go into some depressive funk, easily attributable to the lack of something on which to focus.
The problem is that now there is no hope of another project, another focal point. There are those who would suggest that I go volunteer, that I do something for other people, that I gain satisfaction through giving of myself and my remaining days. That seems like a good idea on the face of it. My challenge is that I don't know what to give or who to give it to.
I don't have the energy or ability to do what I used to do, to do what I know how to do. It takes so much energy and work for me simply to go through my day. The "activities of daily living", that's the term the medical and professional community uses for what I do each day, absorb just enough of my energy to leave me with little more that the motivation to read or watch TV all day. The work of getting up, getting food, getting dressed, all these gettings leave me wanting, wanting for energy and enthusiasm.
Perhaps my focus should be on just getting through the day; I can do that easily enough. Perhaps my focus should be on finding something to focus on. One option would be to volunteer with the ALS Society, except then I will be surrounded not only by my own disease but by the frustration, pain and struggles of every other ALS patient in Alberta. Another option would be to find part time work, something to keep me focused and busy yet not so busy as to wear me out. There are options; I know this to be true.
First I need to focus on what to focus on. The rest should come together after that. My first step, as it always must be, is to put my left foot in front of my right, metaphorically since walking is something I no longer can do, and move forward somewhere, somehow. Maybe that is why I keep wanting to get away, go on a road trip or a boat trip. It is motion. I wonder what I will do when I can no longer get away? What motion then?
Thursday, 25 July 2013
ALS and Dating
As a single man with ALS, especially one in a wheelchair, it is almost impossible to get a date or start a relationship especially once a woman hears those three letters. I am tired of the rejection; I understand the rejection. Think about it. Who wants to start something with a man in decline, a man with such difficult challenges ahead of him? Who would be willing to enter a relationship where the rewards are all so short term and so limited? Most women my age are still in career mode while I am in retirement mode. Most women my age don't have the time, freedom or resources to do the kind of travel and go on the kinds of adventures I want to go on. It is just too much to ask of a woman.
It gets complicated when you take the wheelchair into consideration. This mechanical monster is scary; most women don't know what to do or how to deal with it. The wheelchair is as much a blockade as the man who inhabits it. Approaching a man in a wheelchair carries all kinds of risks, from the fear of making mistakes to questions about ability and physical limitations. Then add in the ALS part and it is an almost impassable barrier.
Most women start with simple self-interest. They don’t want to be a care nurse; it's a lot of extra work in their life that they don't need. They don’t want to enter into a relationship where they might have to help with personal care, mobility, showering or bathing. It is a huge responsibility, building a relationship with someone with limitations, especially with a short timeline. It is a burden and turn-off.
This kind of reaction is completely understandable. It is hard for them to see that I get along just fine without them and when the time comes I will have professional care in place. It is hard for them to see that I already take care of my personal hygiene and will be capable for some time to come. In other words, unlike "healthy" men, I come with a care plan already in place.
They must wonder about sex too. Let's face it, someone with no legs must be bad in bed, only able to lie there and not move the lower half of his body. As time progresses it will only get worse, right? Well there are some challenges for me physically but if you ask any of the women I know, they will assure you that everything that needs to work is fully functional. I may not be a young stud but I am as enthusiastic as anyone else when it comes to sex, perhaps moreso. Yet that is hard to see, and even harder to talk about, when you see someone online or in a public place.
In the end, I understand the real question. What will happen if I fall in love with this guy and he dies? It will hurt too much. For a woman in my age group, her time for recovery after I die is just too short. Starting anew when you are 60 is a hell of a lot tougher than you think. So why bother starting something when you know for sure that you will have to start all over again in a few years?
It's a tough thing to realize, that I am quite simply a bad relationship investment for most women. I understand completely why they aren't interested. They want a whole, functional man who will live into their golden years with them, care for them in their old age, love them forever. Unfortunately what most people don't realize is something I am far too acquainted with. Life happens and death happens. No matter who you choose, one of you will die before the other. Life is a crap shoot; you may meet Mr. Perfect and he could get hit by a truck or die from pancreatic cancer shortly thereafter.
The only difference between me and anyone else is that my timeline is visible. You cannot dream of wandering into the sunset with me by your side. My reality is there for all to see. Why would anyone want to date a certainty when they could date a dream?
Subscribe to:
Posts (Atom)