Well of course I don’t really get my nose picked, but I do get it wiped periodically. After all there is nothing like someone staring at “cliffhangers” while I’m discussing world affairs.
It prevents one from being taken seriously.
Further dignity issues come up when being spoken of in the third person, when I am sitting there in the room, i.e. “she took her medications on time” or “she’s in a good mood today, but boy was she bitchy yesterday.” This speaks to the issue of dignity because being spoken of as though one is a ghost is maddening.
In fact there is a book by a man who had a neurological disease and couldn’t speak. The book is called Ghost Boy. In it he writes about what it was like to be in a room with people talking all around him but not thinking that he is actually listening to what you were saying. Not only listening, but wanting to respond. In short, he felt like a ghost. But now he has a electronic contraption that allows him to convert what he is saying into a computerized voice. It gives him a sense of being able to participate. Hence, a verification of dignity.
Please consider the word “invalid” the break down of the word suggest in-valid or not just or legitimate. We are all legitimate.
So whether it’s being addressed in spite of cliffhangers, or being a party in the same room, or, for that matter, sitting over the toilet pinching a loaf, we all expect to be treated with dignity.
Anyway, onward and upward.

Advertisements

Death and Life

November 14, 2014

After much finagling, I think I’m back to blogging. And there is so much too blog about: we’ve seen ISIS being very active, Ebola in Africa, and only 30 % of the electorate voted. On the mundane level, it’s colder than a witches tit, gas prices are lower than ever and ass is in.

Now, the temptation is to focus on the negative. As an example, I know someone who goes berserk when he is behind cars that aren’t following the speed limit. Cursing and dropping the F-Bomb every five minutes is not going to make them drive any faster. But he continues to be aggravated.
I also remember one time when my PCA forgot to come in. As I languished in bed, wondering when someone would be getting me up and feeding me, my husband came. Finding me PCA-less, he wished a pox on her house.

Rather than agonize over my plight, I meditated on what I would be eating for supper, whether I should shave my armpits during the next shower and when I would get laid next.

Now it’s not to say that I always look at the lighter side of life, but I am reminded of a guy who climbed mountains who said the following: When we’re stuck in an untenable situation, imagine 3 feet all around us and realize that everything outside that zone is out of our control. Everything within that zone should be our only concern. The next step up is the only concern. I like that philosophy, as they say, tomorrow hasn’t happened and yesterday is over so live for today.

On the other side of the coin we can address the more positive developments. Maybe the most significant change is that I am a new Granny I look at the serenity and calm of their little faces and I am brought back to the most important part of life: I’m surrounded by very strong people not the least of whom is my son who is daddy to these two new little souls. My son and my daughter-in-law may not agree with my description of their twins as “peaceful”, since they are both lacking sleep. But to me , such innocence is calming.

In the spirit of the holiday I am thankful for the people around me, the ability to see these wonderful people, and my two little granddaughters who are my precious sweetie-pies.

The Joy of Spunk

July 31, 2014

Now, the title of this blog is “Living with Advanced Multiple Sclerosis-reaching out from the inside.” One of the most important ways I have of reaching out is writing this blog. This is possible by getting assistance from my good friend and PCA, Brenda. Since I don’t have the use of either hand this might seem to be an impossible feat. The way it works is that I dictate what I want to say and Brenda types it in. Then she sets up the laptop so I can read it and make the appropriate changes.
There is some difficulty in expressing my anger about somethings because, lets face it, how pissed off can I sound if I can only speak in sentence fragments. Of course, It doesn’t read that way. But just imagine being really perturbed and only able to thrash about through the form of letters. There would be long pauses which would soften the blow. On the other hand it is difficult to convey my sheer joy of becoming a Grandmother. My point is that a good deal of frustration can be felt about this, but it’s eased by being able to express myself through blogging.
Besides blogging I’ll ask my PCA to help me “flip the bird” at a medical supply delivery man who can’t get the order delivery correct. Or sometimes I will ask my PCA to put one of my newest kittens on my chest next to my face- oh such furriness. I rely on the reader to ascertain my mood whether it is sweet or snarky. And sometimes it’s a combination of both because being snarky comes naturally to me.
Either way, spunkiness is a sign of life. And living, I am.

A Day in the Life

June 6, 2014

It’s been so long, since I last blogged, that it’s almost a strange experience. But at last, here I am.

So many things have been going on around me. Like planes disappearing, planes crashing and, of course, the mess in the Ukraine.

Those are things much more important than, say, mammograms which are an important part of women’s health. Having experienced breast cancer personally, I can understand a woman’s concern which might lead her to expose herself to both a humiliating & uncomfortable experience. It is not enough to be afflicted with a disease like MS but we have to try to accommodate an machine that is not really made to be used on women who are in wheelchairs, or otherwise restricted in movement. So imagine… what if men had to flatten their “nuts” between two slabs of plexiglass in order to check for cancer?? How quickly things would change??

The bruises on my forehead from the antiquated machine which dug into my head on number of times during the process are probably minor compared to other problems. But, really…

But I will try to end this on an up note. An in ten days I find out whether I have cancer again or not. With any luck everything will turn out to be OK. Then it is onward and upward toward a new future and Grandmother-hood!!

Real Life

March 17, 2014

Its been so long since I’ve blogged and there have been so many things that have happened: the mess over in Ukraine, missing planes, and the change of seasons. My interest in the mess in the Ukraine is prompted by the fact that my paternal grandparents came from the Ukraine. I think that my grandfather, who was in the Parliment, would have been happy to see the people there attempting independence. Not only that, but Putin is crazy.

I’m really sorry for the family members of the passengers on the missing plane, but truthfully, there has been some very good news that I must express. 

My son and my daughter-in-law have told me that they’re expecting twins and this takes precedence.
There are almost no words that express my glee over this news but I’ll attempt it. For one thing, it reminds me of my own pregnancy with my son.  I wish the same ease and happiness during my daughter in law’s pregnancy that I had. Right now she is very tired a lot of the time but I hope that she’s able to experience the energy and healthiness that I had. In fact, I don’t think I ever felt better than when I was pregnant. But let’s talk about what this really means: endless time looking at baby clothes, it’s almost irresistible. Possible names for the little sweeties, that irresistible scent of baby-ness: baby powder, baby shampoo, that wonderful smell of a baby’s head. That’s what I mean by baby-ness. And then there are toys, I would guess that there are so many different kinds of toys available for babies now and let’s face it, as adults, we have fun playing with those toys and choosing which ones we’re going to buy for the little ones. 

Now the title of this blog is “Living With Advanced Multiple Sclerosis” and one might wonder what being a grandmother has to do with MS. The answer to that is that becoming a Grandmother is part of life and is naturally part of moving forward with MS. How I will be expressing myself with my grandchildren in spite of my limitations is something I’ll be learning.

Well I’ve addressed the little foibles involved with looking for clothes in a cluttered store, and I’ve addressed some of the most beautiful things life has to offer. But, alas, I haven’t addressed an integral part of having MS, and that is pain. What better time to address the issue than while I’m experiencing some trigeminal nerve pain. The trigeminal nerves run along your jaw, down to your chin, and to have pain in these nerves is certainly the most excruciating pain I’ve ever experienced. It’s been compared to getting an electrical shock except that this isn’t a zap, its a Zaaaaaaaaaaap. It’s not the first time I’ve experienced pain with MS but it’s the most intense. I remember feeling like I was getting stabbed in the head.Though I’ve never been stabbed in the head, it’s what I would imagine it would feel like. It comes just as I am drifting off to sleep then the music from the shower scene of Psycho can be heard.  I’ve never tried to sleep on a cactus but it sometimes feels like I am. Much of the pain is difficult to describe so it’s somewhat frustrating to convey my level of discomfort. It’s when it interferes with eating or drinking that I become concerned and try to express my concern to others and then I’m not so perky and charming. 

So what’s the moral of the story? That pain sucks? That MS has been around for so long and yet there are no cures? My complaints are not unique since there are many people in the world contending with actually much worse. One only has to tune into the news to see that. It’s impossible to compare pain but being able to laugh is something that we all have in common so laughter may be the great equalizer. As they say laughter is the best medicine.  

I blog therefore I am

October 22, 2013

There have been so many things going on lately: government shutdowns, tea partyers throwing a monkey wrench into things, and strange weather. All of it makes you wonder doesn’t it? 

On the other hand, there have been some memorable things happening as well. Autumn is my favorite time of year and the weather has been excellent, especially for people with MS. The temperatures have been cooler. On my last excursion the leaves were a brilliant color, the air with a damp, woodsy smell and a hint of apples and the crunch of leaves underfoot remind me of some beautiful Autumns I’ve experienced. The crisp air blowing the hair back away from my face and feeling so alive is part of what I remember when I could walk or ride a bicycle at that time of year. For that matter, being on the back of a motorcycle on the curvy roads of New England was great fun. Sometimes it takes just a thought of Autumn and a beautiful sunset to remind me of how much I love life.

Just think….

It’s To Laugh

September 5, 2013

Its been a long time since I’ve blogged, so I’m way overdue. 

I was somewhat distracted by the mundane (still searching for a Calico kitten) to the serious (things in Syria are such a mess). So, I paid attention to a couple of commercials that I’ve been seeing a lot of lately. For example, the commercials encouraging us to vacation in some interesting areas. I don’t think we ever thought of Czechoslovakia as a vacation spot. Now let me qualify what I’m about to say by reporting that my dad’s parents were from Russia so I have a Slavic background. But, theres something somewhat amusing about Czechoslovakia as a vacation spot. Does this mean we’ll be seeing ads for 6 Flags Prague? Or a McDonalds Big Mac with a side of borscht? 

Or how about Mexico ? I can just imagine it now “Beautiful Mexico, full of adventure. This could be the adventure of your life, maybe literally. When’s the last time you were kidnapped? Or taken hostage by a drug cartel? A vacation you’ll never forget (even after many years of therapy)” 

A good sense of humor is imperative if one has disease of any sort including MS.

There are many jokes that can be made about catheterizing (wrong hole?) or about ending up on the floor during a transfer (a close inspection of how clean the floor is). There are numerous jokes that can be made about this situation and it’s a good idea to try to see some humor in what could be a pretty sorry situation. In fact, just yesterday I became aware of some head tremors that I get every so often and I was reminded of the bobble heads in the backs of cars. 

Not so funny for some people but it takes a keen sense of hilarity to appreciate every aspect of living.

Getting Older

July 26, 2013

Today I was reminded of something I am reminded of everyday: the fact that getting older is part of being human (I never imagined that my knees would feel sore from arthritis). Getting older in itself is not a bad thing but there’s always a little bit of our youth hanging around. Whether we are healthy and getting older or not healthy, either way, we’re reminded of the fact that our bodies may be getting older but our minds are young at heart. 

I’m reminded of Wordsworth’s “Ode: Intimations of Immortality. In this piece he wrote that living in the world,with all of it’s adult requirements sometimes causes us to move out of something that we’re in touch with when we’re very young: which is hope and imagination. We lose this as we get older, and become indoctrinated into “adult thinking”. 

Remember when we thought anything was possible? The world was our oyster, and a shot at the Presidency was just as likely as becoming a brain surgeon, or having macaroni and cheese for lunch. We could go on a hot air balloon ride, or fly a rocket to the moon.

The possibilities were endless.

That kind of thinking is what’s required, especially when one is facing a serious illness. I don’t hope for miracles but there’s a lot to hope for. Hoping for a good day with few discomforts is pretty practical. Imagining a fantastic outing full of fun and discovery is still a possibility. Yeah, I’m getting older but my mind is child-like at heart. I can still get somewhat giddy over a dessert I may be looking forward to or a visit from a good friend.

I’m getting older but I’m alive and there’s a lot of nice things to be found in that alone.

Being Human

July 2, 2013

Of late, I’ve been considering the plight of feeling stuck. I’ve written considerably about this topic and the problems associated with having certain limitations, but there are some aspects of this experience that remind me that we are all very human, with feelings that don’t change in spite of physical limitations. 

I’ve written about shopping for clothes, looking for health alternatives, and striving to reach summits that don’t seem surmountable. But there is an aspect of this situation that is like the 800 pound gorilla in the room, and that is the following: there are feelings and desires that we don’t like to discuss. We seem to try to hide disease. In part, because we don’t want to see the possibilities, especially if they’re negative. But the questions don’t really change. 

Am I too old to care about how I look when I leave the house? Am I too quadriplegic to be concerned about how clothes fit? Am I too broken to want a lot of the same things I wanted when I was 30? At the risk of much eye-rolling on the part of my son, for instance, who reads my blog, or audible wincing on the part of my husband, people in wheelchairs really do have feelings that are generally not attributed to them. Most of the concerns and longings people have at any age over 20 don’t go away once your mobility is limited. This is an area that is almost never addressed by physicians. They ask about pain and discomfort, or side effects, but unsettlingly avoid that gorilla. Just like anyone else, I want, I fear, and I need. Moving into a wheelchair hasn’t changed that. The difference is, I can’t actively search the way most people would, instead, I’m able to give hours of thought to these things and I’m aware that feelings that I have aren’t different than the wants, fears, and needs of the people around me. I have to boldly face desires and fears. I am reminded of the story of the cave of the green dragon.

The cave of the green dragon is where desires, needs and fears reside. We all struggle to slay the dragon in whatever form that may take. Each time we confront a desire, a need or a fear and take hold of it we are slaying the dragon. 

I live in the cave and people with similar situations also live in the cave. The blog is one way out.