A Darkness of the Soul

November 9, 2017

It’s been such along time since I’ve wrote last, but I’m back again.

It took a few weeks to look for one more Pca, it’s hard to get good help these days, as they say. I try to advice people to have a good prospective. Having a happy disposition around me is a plus and helps me to remain positive.

Depression is a topic I’ve only touched upon, but it’s not impossible to experience this. I don’t pretend to know everything about this subject, so I would suggest Depression: National Multiple Sclerosis Society. I’ve only briefly experienced this problem as it relates to my prospective while I’ve had M.S. It can be a problem related too the situation of decreased mobility. And even then it can include any degenerative disease.

 If I had just awaken one day and found myself in the shape I’m in now, I think I would have at least depression if not something worse. However it’s not uncommon to feel negative along with a degenerative disease. Instead it’s been like a frog in a pot of water when the heat is turned up, it doesn’t notice how hot it is getting. Until it’s boiling and nearly cooked. It’s been a slow decline, which has made it easier to adjust to this condition. Little by little I’ve ended up quadriplegic. I can’t move anything below my neck unless someone does it for me, but I can feel everything and there’s nothing wrong with my mind, I can still make a cogent point or “so I’m presuming”. 

An example… I felt some depression when I fell down one day and wasn’t able too get back up. So I cried and went to the doctor, he treated it biochemically. Right now I’m taking two anti- depressant and a sleep aid, one is for a problem mood and the other is for PseudoBulbar Affect. The sleep aid is common obviously, to help me sleep.

To be sure, depression can be part of Multiple Sclerosis but if it’s treated and there is someone who can be trusted and vented too, it helps. And surrounding yourself with happy people is another important facet in the treatment of this condition, positive thinking is difficult but do able with assistance.

So, in keeping with my metaphor of climbing a mountain. One must try to keep looking up to the peak. The climb is worth the view at the top. Even when they’re gaps.

So, after a woefully long time since my last entry I find myself needing to write about something that is not a pleasant subject. This involves a matter that is not only unpleasant but, in many ways questionable. We have a problem with opioid addiction. There are some drugs that are worse than others to be addicted to such as herion or crack but, opoids have their own addictive qualities. 

Opoids are generally used to lessen the problem of pain. Living with pain is not unusual for someone with MS. I’ve addressed the problem of trigeminal neurology issues. There are many invasive procedures like cutting the nerve between part of the jaw and lower mouth nerves which can likely cause an inability to use the muscles used to smile for example. It’s quite a price to pay for relief so the choice of using opioids seems more powerful.

The problem with opioids is that usually a person builds up a resistance to the drug so one drug is replaced by another of the same type. So if I develop a resistance to oxycodone I might be switched to hydrocodone or maybe Percocet it’s a problem that requires one drug being replaced by another of the same type. The worst part of all of this is that I could spend the rest of my life jumping from one opioid to another. There isn’t much likelihood of ever being able to stop the use.

The problem of jumping from one drug to another is a sad development and usually is the first option. So my promise to all of you is that I will keep you informed of my progress which is the hope to continue with my more positive developments.

Farther into the cavern

September 16, 2016

Its been awhile since I wrote and its been a couple of interesting month’s. for example, I spent a few days in the hospital with asperation pneumonia {not unusual for people with Ms} and I spent five days in the hospital getting very strong antibiotic for the treatment of a serious UTI {also not uncommon for people with MS} in the process of my experience my lung doctor once spoke to me and my health care proxy about the necessity of having an advance directive  . wow, this is a long way from trudging up the hill to reach a summit.

One could think of an advance directive {which everyone should have} as an instruction for the people who know and love you to follow your wishes as to how you want the end of your life handled. So its exactly what it sounds like. After all the issues similar to what happened in the terry schiavo case among others. It became clear that the people around us should know how we want things handled at the end of life. Its a disturbing thought but a decision that one should share with loved ones before anything might happen.This is getting depressing so Ill move on to the next downer.

A UTI is something that people with MS among others is always a possibility. For some reason UTI (urinary tract infection) are a quite common in people with MS, maybe because the immune system is compromised so infections aren’t unusual. If  one drinks alot of water and keeps the bladder empty the incident is not as likely. their was a time back in the middle of last century that UTI were cause of death for people with MS. They had come along way with antibiotics since then. The problem is, sometimes a very strong antibiotic (which can only be administered in a hospital) is required. In my case it was a five day process which means I was required to be in a hospital and that brings me to the next topic: staying in a hospital for any length of time.

Have you ever noticed that hospitals don’t have showers?to be sure, hospitals arent’ment to be rehabilitation institutes.As an individual who is very concerned about hygeine, this is an issue. After two days I was beside myself with a feeling of being “dirty”. I used the hair cap to get my hair shampooed. But theirs nothing like an all over hosing down. I really missed that and it prompted to want to get out as soon as possible.

All these things contribute to an avoidance of a stay in the hospital. UTI, Pneumonia, or anything else serves as a reminder that its a good idea for anyone to share wishes with their health care proxy. Its all disturbing but necessary and its a good idea to address these subjects with all close ones. It certainly interfers with common activities like writing blogs but its part of life and should be addressed.


The Value Of Chaos

April 13, 2016

In reading the last few entries, I’m struck by the pollyanna’ish perspective of having this disease. So lets get real:

Their are three major types of MS. There’s relapsing-remitting (it comes and goes). Secondary progressive starts off as relapsing-remitting then becomes progressive. Progressive is a “steady systematic decline,” to borrow the words from Nine Inch Nails. Sometimes with S.P.M.S (secondary progressive ms) a development of being objectified can be noticed. An example of this is being referred to as “a lift.”

Being referred to as “a lift,” is not intended to be a disparaging comment, but it sure feels like one. I feel safe enough, and i know my P.C.A.’s minds are put at ease. But its difficult not to feel like a medical specimen with this contraption sitting in my kitchen. That’s a pretty hard look at it, isn’t it?  But in some respect, its fairly realistic. (I had a P.C.A who told me her professor was surprised i wasn’t bedridden)

The disease spans the range from being able to walk, maybe with a cane, to being stuck in bed. I’ve known both types of individuals. I remember meeting a guy who had progressive MS and having to catch his hand mid-air in order to shake his hand and tell him i was glad to meet him. When i left, I remember thinking that I had no intention of ever “going there”.  Now here I am known as a lift. Its been like a slow drip. One might be reminded of the frog sitting in a pot of simmering water and doesn’t notice the water is getting hotter and hotter. I guess what I am trying to say is that if I woke up one day 15 years ago and went from dancing to not being able to get out of bed. I’m not sure I would have handled it as well as I have. Theres a certain level of taking the path of least resistance. Accepting things the way they are.

And yet my spunkiness and acerbic perspective cannot be restricted by a lift. In some regards I take action when I can. So in spite of having a miserable disease and to go back to being pollyannaish, it could be a lot worse. I have written about how pleased I am to have long hair, eat chocolate, or to  have some control over my environment. To quote Nietzsche “One must still have chaos in oneself to be able to give birth to a dancing star.”




So it’s 2016 and it’s an interesting year already.  I’m reminded of an old Chinese curse that says “may you live in interesting times”.  It’s an election year so wackiness ensues.  We’ve seen some losses, some my own contemporaries.  Famous and talented musicians–the end of somethings and the beginning of others.  Some horrible things have been going on around us and they allow a different perspective of my little world, which consists of minor preferences, such as environment.  Some changes have been taking place.  For example my living space has been altered.

My living space has been revamped.  Specifically the rug had to be torn out and replaced with a new floor.  In the process, this created some situations that were untenable.  Tearing out the rug produced enough dust that you could plant potatoes in it.  Not a healthy work environment for my PCA’s.  Then when they were preparing the new floor, the adhesive had a dangerous smell putting my health and my workers’ health in peril.  I refused to leave my home because my environment is one of the few areas over which I have control.  My home and how it looks, my diet and the food I prefer, and the choice of cologne I wear are all I have control over.

So when the smell of the adhesive became overpowering, I found myself in the position of be “saved”.  This prompted me to fight tooth and nail from being ripped out of my home, my environment. Alas, facing the reality of being in a dangerous predicament finally won out.  But boy was I pissed.

We pretent to have control over so many things in our lives, but whether its a forced change in our environment or health problems, we are uncomfortably reminded of how little we have a say in somethings. Sometimes our response to various situations is what really matters. Led Zeppelin had a song about having two paths available. We can choose one road that leads to many other roads. Our choice is the extent of our control. In these interesting times our choices tell all.


So here we are in the midst of the holidays. These are the days that family becomes our focus of interest. This is the case especially if their are children in the family. Its through our children’s eyes that the holidays become as magical as they are. A child’s wonder and their dreams of the ” impossible” become reality.

Along those lines, my trip to my neurologist provided a journey into the “impossible.” My biggest inquiry was concerning my Trigeminal nerve pain. It turns out, their are special trigeminal nerve pain centers in Boston and down at Yale. I have to get an MRI done in order for these pain centers to know whats causing the nerve issues.

Nerves are very strange, as you might know. sometimes pressure from a vein on a nerve can trigger nerve pain. Thats the possibility of Trigeminal nerve discomfort (Whoa, thats understating the issue, pain in the side of the face that can be triggered by something as light as a hair strand over the cheek and causes excrusciating,  tear’provoking, writhing, drop to your knees pain,is not discomfort. Discomfort is what we feel when we are not transfered correctly) my shoulder dislocates pretty easily thats discomfort.Sitting on a chair that cuts off the circulation in the legs is discomfort.we are talking about actual pain.

Their are many ways they have of treating this problem of nerve pain. one way is to use different medications that might work to calm the muscle around the nerves. Another way is to use a laser to “move the vein” so it reroutes the circulation around the nerve instead of pulsating next to it. some of the methods involved actual surgery and some of them involve lasers, but at least theirs some indication of relief in the future.

It was interesting to read that 40% of people with MS experience this kind of pain. So its not unusual and it explains why their are places that are completely dedicated to Trigeminal nerve problems. It makes possibilities quite real.

The look in my granddaughters eyes as they approach everything with wonder and possibility is something we lose as we mire ourselves in the “reality” of paying bills and the restrictions set upon us as we get older. We lose that wonder and excitement at new things like snowflakes falling, squeeky toys or playing peek a boo. Pain  is remedied by chewing on a cold cloth, or change of diapers.

As a former English major, I’m reminded of the poet Blake. He wrote about this wonder and imagination. Its so easy to lose touch with that. So go out and feel the wind on your face, Enjoy the taste of strawberries , and get excited about bubbles popping in front of you. Don’t forget the fun. Children remind us of these important lessons.

Last week, while visiting my mother, I had an insightful yet disturbing experience. It was insightful because I saw my mother from a different perspective. Disturbing, because I realized that there’s a shake-up in the dynamics involving any major change in relationships.

This shake-up in dynamics is not something I’ve been unaware of, but I think it’s emphasized when someone who has been seen as independent, or authoritative, is in a position of requiring the kind of assistance we might expect from a child. As a daughter, and now, as someone who requires caretaking, I’ve been able to experience both sides. I’ve seen my mother, and others her age in nursing homes, being spoken to as if they were 5 year olds. This is not only demeaning, but is somewhat insulting. It isn’t intended on the part of the caretakers, but it makes me think of the possibility that if we are not speaking eye to eye with someone, and literally or figuratively, are looking down at them, we imply a lack of parody. An example may be when we’re talking to a child, we simplify as much as possible, thinking that the little one won’t understand something more complicated. Something similar seems to happen once a person becomes elderly, or is disabled. I can’t tell you how many times I’ve been spoken to in this manner because being in a wheelchair means, to some people, that I’m hard of hearing. Sometimes, I’m simply ignored. As I said, I know this is done “with malice toward none” (Abraham Lincoln). But it’s still disturbing. In the case of my mother, she’s 92 years old, experienced incredible hardships, but I have no less respect for her, even though she has serious memory issues and requires caretakers, or is in a nursing home. But she’s quite different than the woman who raised me and guided me in all my important decisions. Where to go in a situation like this?

The experience with my son is not one that suggests a deterioration in his respect for me, but child-parent relationships, as well as spouse, or brother-sister relationships qualify. Is it ever a good idea to say something like, “We talked about this yesterday, do you remember?” I wanna say, “Fuck you!” when I hear that. I’ve already addressed the issue of being spoken about in the third person and how insulting that is. Let’s see, do I have any more complaints about how touchy we can be?

With so much responsibility being transferred over to caregivers, it’s only natural that the dynamics in any relationship would change. But can’t there be some awareness when speaking to or about someone elderly or in a wheelchair? The same sort of respect paid earlier in life might be employed. It’s a good idea not to try to erase all that the person in question has experienced or accomplished. Rewriting history is never appreciated– so don’t do that! Think of it this way, on top of everything this person has experienced, adjusting to age or disability can be added. Overall, I know I would say, and my mother would agree, it’s been an interesting journey.

On my onward and upward theme, there’s a new drug they are testing called MIS 416, as well as a few others, that could be helpful for people with SPMS (secondary progressive MS). I’ll find out more when I see my neurologist in December and will report accordingly. The hope continues.

An Enigma

July 17, 2015

So I was seeing a new neurologist and I was being checked in with the receptionist, and was rolled up to a blank wall (an interesting metaphor in itself). Looking at this empty space, I contemplated the 800-pound gorilla in the room: mortality. This is a concept considered by philosophers and theologians for centuries. It’s really no different for the rest of us, because we all think about our demise at some point or another.

Since a good part of the world’s population believes in Heaven and Hell, life after death is an important part of their dogma. These beliefs sometimes inspire people to behave in ways that are socially acceptable, and more often than not, this is a good thing. I think of AA and the effect it has on people to avoid abuse of any sort. Sometimes, religion works the same way.

But how often do these beliefs just comfort us, when we are faced with difficult situations? A loved one passing is an example. Do you know how much money is spent on coffins, tombstones, and cremation? Sometimes just to compensate for a lack of concern during that person’s life, a good amount of money is spent. It’s a high-dollar business.

All of this, as morose as it seems, had me thinking about some of the theories of life after death. I was reminded of the concept of reincarnation. I have reasons to lean in this direction, and one of my brothers who took this concept seriously, told me about some Buddhists he read about who believe not only that we are reincarnated, but they also believe that we reincarnate because our Higher Selves or Souls are hooked on the experience of the sensations of extremes. Abject terror or serene comfort, intense anger or sublime happiness, excruciating pain or blissful pleasure. It’s an interesting theory.

This is a theory that most of us can relate to. The extremes most of us experience aren’t as pronounced as those in the Middle East, or if people might have a disease like cancer. For instance, I know what it’s like to feel like I could walk on air, but I also know what its like to have fallen on the bathroom floor, trying to dial 911 on a cordless phone, so the two EMTs can hoist me back up onto the toilet. An interesting experience. I appreciate both realities. It’s like there’s Darleen 2.0 and Darleen 1.0.

I’m reminded of a short story written by John Irving called “The Hole in the Floor”. In the story, one can look down into the hole and see all of the experiences of happiness or beauty the person might experience. At the same time, that person can look down the hole and see all of the horrible and painful situations occurring during that life or incarnation. Now, that soul has to decide whether or not to risk facing the negative, if it means being able to have the positive.

On the other hand, Carl Sagan (of Cosmos fame) would say “Science always wins out.” He believed that there wasn’t any consciousness after death. He said he took “great comfort” in believing this. In this case, being an atheist is as much of a faith as otherwise.

So what’s the difference? I think that the concept of life after death will be contemplated by philosophers and theologians for time to come. The question since time immemorial, remains:

Who knows?

A Happy Wish

June 14, 2015

It’s been so long since I blogged last, I have almost forgotten how. But I’m inspired because next Sunday is Father’s Day. My son will be experiencing his first Father’s day And I would like to wish him a terrific day spent with his two lil sweetie pies. But I also want to remind him of something he already knows:
It’s so important to inspire self-worth and self respect in your daughters. As you know, our society has a history of raising girls to be so unsure of themselves. I know that won’t be the case in your household, but keep in mind that the first relationship they have with a male will be the one they have with you, their Daddy. I know you want them to expect the same level of respect and love that you show them– so set the bar high.
I’m not telling you anything you don’t already know and I hope that your experience as a parent will be as happy as mine was with you.

Have a Happy First Father’s Day!!

The fundraiser that my son started has turned out to be very successful. I will be able to have another wheel chair van, except it will have suspension. And I no longer be able to see the road through the floor. I have many nice people to thank for their donations and support.

In keeping with the metaphor I’ve used comparing MS to a hike up a steep mountain, this fundraiser has served as a boost up. I’m encouraged and exhilarated.

Thank you, thank you, thank you so much!