“The Sandwich Generation” is a phrase that has barely penetrated my awareness over the years. Whenever I have seen a news article or report about it, I have scarcely skimmed the information. The vaguest conscious thought of “that will never happen to me” has slid through my brain each time.
Funnily enough, a decade ago, when I saw a movie about a woman who had MS (Hilary & Jackie), I thought the same exact thing.
Maybe I should just stop thinking.
The expression “The Sandwich Generation” was coined to describe Baby Boomers who were discovering themselves living with/caring for their aging children at the same time they had to live with/care for their aging parents. People my age are then stuck in the middle, caretakers to two generations, with no energy, money or enthusiasm left for their own lives.
In my case, I never supposed it would affect me because I assumed my children would all be settled by at least their early twenties and be on their own. First mistaken belief. I currently find myself living with two grown daughters, who show no signs of going anywhere else.
And what would I call them now? They are not like roommates, because they don’t help with the bills or the housework. As a matter of fact, when I asked my 21 year old recently if she would help me straighten up because I had a business client coming over, she snapped at me that I shouldn’t expect her to be my ‘slave’. So they are not slaves either.
More’s the pity.
They are not really children anymore because they are bigger than me and have jobs and serious relationships and drive their own cars. But they kind of are like children because they still watch TV all day on their days off, leave dishes and debris all over the house and don’t pay for anything.
I lived alone for about 5 minutes before they both asked to move back in for various reasons. I said ‘of course’. My sister said “ARE YOU OUT OF YOUR FUCKING MIND?” But these are my children. I adore them and would do anything for them. So back they came, with my expectations and boundaries clearly laid out for them.
Now my expectations and boundaries are clearly laid out in the yard, where they landed when the girls tossed them out the window.
So they are not roommates, helpers, slaves or [actual] children. That could leave ‘parasite’, but I don’t want to be mean.
This would make me an open face sandwich so far, which I have been dealing with. I deal with it mostly by wringing my hands and ineffectually whining to them they have to be preparing to find their own places and they really need to help me more, but I deal with it.
The other reason I thought this would never happen to me is I guess I thought my parents were going to be healthy 40 year olds forever. Another example of why I should stop thinking. Because, surprise!! My parents have grown old.
For someone my age, 54, they are still relatively young. My mother is 75 and my father is 76. They have friends their age who travel and are very active. Shoot, I have friends their age who travel and are active. But my parents are not doing well.
My sister took them into New York this week so my mother could have her pacemaker replaced. This is a relatively minor procedure, although a minor procedure to my mother is the same as a heart transplant. I did not expect anything to go wrong, and technically, it didn’t.
But when my sister got home, she called me immediately. Although she ended up making me laugh because she is so funny, she was distraught. She said she felt as though she had just spent the day in the Twilight Zone. I cracked up and said you did, you were with Mommy and Daddy. (sad but true, we still call our parents Mommy and Daddy; my children tease me about this mercilessly).
She said, no, there was something seriously wrong. I won’t go into details, because even though I seem irreverent about my parents, I would never deliberately humiliate them. Let’s just say that their behavior was not usual and it was very concerning. And my sister is not an alarmist.
Ok, ok, she is an alarmist. So am I. But we’re alarmist about things like will we get cancer from non-stick pans. Really serious stuff like this we usually take in stride, I suppose because we’ve both had to deal with so much of it.
My parents live about a half hour away from me, about a half a minute from my sister. I told her I would go over and stay with them until I was sure they were ok, but she did instead. And they were. But we aren’t.
Glimpses of health problems, inappropriate responses and behavior have been noticeable for awhile. But we are not a close knit family that talks about ‘things’. We genteelly skirt around the elephant in the living room until everyone gets used to the smell. And let me tell you, we have a circus full of elephants in our family living room.
My father’s health has been the most concerning. But when I expressed my worry to my mother, she furiously denied anything was wrong and firmly closed the subject. My sister and I have talked about just going to his doctor with what we are seeing, but have not had the nerve, afraid of angering and embarrassing my dad. But now my mother’s health seems precarious too.
What appears to be not too far down the road is the reality that they can no longer live alone.
As I said, as a group, my siblings, parents and I are pretty detached. We are cordial, but not really warm. Never really honest. I am the black sheep. Which is comical considering how ordinary I am. But I am the one who has clearly delineated boundaries as an adult that I do not allow my family to cross. I go my own way, do not acknowledge emotional blackmail, I spend my holidays with people who love me and make me happy rather than people who treat me like the misbehaving Village Idiot.
This makes me scary and dangerous, because I do not play by the Family Rules. Scary and dangerous is translated into our Family Speak as “you know what Marie is like”, accompanied by sighs, eye-rolling and much criticism about what a bad daughter I am. Greatly embroidered half truths, if not bare faced lies, accompany this indictment. They wanted someone compliant and acquiescent. They got someone who challenges every coping strategy they have.
So we do not have what you would call the ideal set up for a calm and sensible discussion about the future. Instead we have denial, suppressed anger and decades of baggage. Fun!!! Sign me up for that family meeting!
If push comes to shove, my house is actually the only one that would be practical for my parents to move to. I have a Craftsman style bungalow, with all the necessities on the first floor. Bungalow is misleading, because it is a big house. And my parents really love my home. It could be manageable.
It might never come to that, but the idea, now planted with my sister and I, is like a wild vine that has sprouted and threatens me with growing out of control. My girls upstairs. My parents downstairs. All wanting things from me I can’t deliver, with docile perfection being at the top of the list. I can imagine having to live with the faces of four people full of expectations and perpetually disappointed in me, sucking my life away.
And that vine just keeps winding around this reluctant sandwich...
...we just have to wait and see where it will lead us all.
Monday, March 9, 2009
A Lovely Gift
One of the blogs I read is Caregiving Daughter. This blog is written by a woman with her own growing family. When her mother became less able to care for herself and developed signs of dementia, this daughter generously moved her mom into her home.
She writes about the struggles but those stories are well balanced with everyday joys and successes involving the whole family. It is a demonstration of love and selflessness told with gentleness, simplicity and humility.
This lovely woman has given me an award!
She says:
This award is to recognize blogs that are about making the best out of difficult situations. When life gives these bloggers lemons, they just add a little sugar, stir it up, and make some great lemonade. Has life got you down? Then stop by these sites for some thirst-quenching lemonade for the soul.
And mine is one of them!! Here is my award:

To be honest, I am a little embarrassed because my motto actually is when life give you lemons, ask for a refund. In my head my illustration would look a little more like this:

But I gratefully accept her kind words and sweet award.
I want to check out the other blogs she cites, so here they are as well. Some I have visited, and they are great. For the others, they must be worth a peek. I believe I am in VERY good company.
Got Quads?
Forever Family
Everyone's Family
Beating ED
My Autism Insights
Mommadosey
Moments of My Life
Forever Family
She writes about the struggles but those stories are well balanced with everyday joys and successes involving the whole family. It is a demonstration of love and selflessness told with gentleness, simplicity and humility.
This lovely woman has given me an award!
She says:
This award is to recognize blogs that are about making the best out of difficult situations. When life gives these bloggers lemons, they just add a little sugar, stir it up, and make some great lemonade. Has life got you down? Then stop by these sites for some thirst-quenching lemonade for the soul.
And mine is one of them!! Here is my award:
To be honest, I am a little embarrassed because my motto actually is when life give you lemons, ask for a refund. In my head my illustration would look a little more like this:

But I gratefully accept her kind words and sweet award.
I want to check out the other blogs she cites, so here they are as well. Some I have visited, and they are great. For the others, they must be worth a peek. I believe I am in VERY good company.
Got Quads?
Forever Family
Everyone's Family
Beating ED
My Autism Insights
Mommadosey
Moments of My Life
Forever Family
Sunday, March 8, 2009
MS Awareness Week: Nellie’s Wishes
This is the final day of MS Awareness Week. Thank you to those of you who have read my posts and gained some understanding. Thank you to those of you who have shared warm and supportive comments.
I am so blessed to know a myriad of fascinating people who also happen to have Multiple Sclerosis. I have friends literally all over the world, each one smart, funny and brave, coping with their illness in their own unique way. We all have stumbles of self pity and despair, but for the most part I see wisdom and grace as they deal with this shitty hand that life has dealt them.
One of these people I have met relatively recently through my blog. I believe of all the PWMS that I know, she is the one who has knowingly battled it the longest. She is a young 76 and was diagnosed when she was in her thirties.
She has been married, raised four sons and several step children, she has worked and lived a generally full life. She is a wise-cracking spitfire, sharp and sardonic, empathetic and warm.
We live on opposite sides of the country and she is the same age as my father. We have a remarkable number of things in common, besides the whole MS thing. She is one of those people that you meet sometimes and you just click right away with a sense of joy at finding a kindred spirit.
So I asked her, what perspective can you give us after living with the Monster for more than forty years? What are YOUR wishes? This is her response:
Wishes
Wish the guys would still think I had a sexy walk.
Wish the neighbors didn’t think I drink because I sometimes stagger.
Wish the kids at school hadn’t asked my kids, ‘what’s wrong with your Mom?’.
Wish I had a paycheck, a job, a way to make money while flat on my back some days.
Wish I had a van, with a lift to take my wheelchair further than the corner store.
Wish I could go to the mall just to window shop, buy some makeup, something cheerful.
Wish I could sit in a restaurant without having my cane either trip someone or fall on the floor.
Wish I had the money for a cab to the doctor’s office when I’m too sick to drive but too well for an ambulance.
Wish I could dress up and wear high heels…feel pretty again.
Wish I could have a nice hair-do instead of one that’s ‘easy to care for’.
Wish I could see well enough to read a magazine or book without seeing double.
Wish I had friends that just popped in to help change the bed or take out the trash occasionally.
Wish the doctor didn’t stare at me like that when I walk down the hallway.
Wish I had the energy for a shower and to get dressed every single day.
Wish I could make a lunch date a week in advance without wondering if I’ll be able to make it that day.
Ditto for any plans for a future date, vacation, appointment, hair cut, movie, etc.
Wish people would let me cry occasionally without feeling they had to ‘fix things’.
Wish eight hours sleep didn’t feel like only two and one-half hours.
Wish spending so much time sitting didn’t ruin my hourglass figure.
Wish people didn’t just stop calling me when I have to often break dates.
Wish my kids didn’t ask me if I’d thought about which Nursing Home I’d like.
Wish my kids didn’t tell me I should move closer to them (or in with them) and lose the few contacts I have.
Wish my wheelchair tires didn’t track in mud.
Wish I didn’t have to stay indoors alone on cold, rainy, or snowy days that last for weeks and weeks.
Wish I didn't worry about what the new meds were doing to the rest of my body.
Wish I wasn't so afraid of what would become of me once I can’t get around at all.
Wish I’d saved more money or had unlimited wealth to hire honest health care workers.
Wish someone would just come and take this all away…it gets much too heavy at times.
Wish I’d known about support groups online and how important they are.
Wish Internet service was at a reduced rate (or free) to handicapped folks that can’t get around.
Wish electric rates were reduced for those with power chairs and breathing devices that need plugging in each night.
Wish incontinence products were supplied by Medicare.
Wish I could still dance, even with the Wii.
Wish going to the dentist didn’t cause my body to jerk with spasms.
Wish I could still do my own nails without getting polish all over my fingers.
Wish I could still sew…threading a needle is impossible.
Wish I could still stand at my easel and paint with wild abandon.
Wish I could be with my loved ones when they are taken to the hospital.
Wish I could have sex with reckless glee without fear of peeing the bed.
Wish, when I stumble for words, others wouldn’t look away, then leave as soon as possible.
Wish I could have long discussions without losing the thread of it so quickly.
Wish I didn’t have to write down things IMMEDIATELY after hearing them for fear they are lost forever.
Wish I knew if ever I have the faint aroma of urine.
Wish I knew if I was still lovable.
That is IT. That captures MS, in forty four lines.
Thank you for the gift of your experience Nellie.
And yes, you are, without a doubt, still eminently lovable.
I am so blessed to know a myriad of fascinating people who also happen to have Multiple Sclerosis. I have friends literally all over the world, each one smart, funny and brave, coping with their illness in their own unique way. We all have stumbles of self pity and despair, but for the most part I see wisdom and grace as they deal with this shitty hand that life has dealt them.
One of these people I have met relatively recently through my blog. I believe of all the PWMS that I know, she is the one who has knowingly battled it the longest. She is a young 76 and was diagnosed when she was in her thirties.
She has been married, raised four sons and several step children, she has worked and lived a generally full life. She is a wise-cracking spitfire, sharp and sardonic, empathetic and warm.
We live on opposite sides of the country and she is the same age as my father. We have a remarkable number of things in common, besides the whole MS thing. She is one of those people that you meet sometimes and you just click right away with a sense of joy at finding a kindred spirit.
So I asked her, what perspective can you give us after living with the Monster for more than forty years? What are YOUR wishes? This is her response:
Wishes
Wish the guys would still think I had a sexy walk.
Wish the neighbors didn’t think I drink because I sometimes stagger.
Wish the kids at school hadn’t asked my kids, ‘what’s wrong with your Mom?’.
Wish I had a paycheck, a job, a way to make money while flat on my back some days.
Wish I had a van, with a lift to take my wheelchair further than the corner store.
Wish I could go to the mall just to window shop, buy some makeup, something cheerful.
Wish I could sit in a restaurant without having my cane either trip someone or fall on the floor.
Wish I had the money for a cab to the doctor’s office when I’m too sick to drive but too well for an ambulance.
Wish I could dress up and wear high heels…feel pretty again.
Wish I could have a nice hair-do instead of one that’s ‘easy to care for’.
Wish I could see well enough to read a magazine or book without seeing double.
Wish I had friends that just popped in to help change the bed or take out the trash occasionally.
Wish the doctor didn’t stare at me like that when I walk down the hallway.
Wish I had the energy for a shower and to get dressed every single day.
Wish I could make a lunch date a week in advance without wondering if I’ll be able to make it that day.
Ditto for any plans for a future date, vacation, appointment, hair cut, movie, etc.
Wish people would let me cry occasionally without feeling they had to ‘fix things’.
Wish eight hours sleep didn’t feel like only two and one-half hours.
Wish spending so much time sitting didn’t ruin my hourglass figure.
Wish people didn’t just stop calling me when I have to often break dates.
Wish my kids didn’t ask me if I’d thought about which Nursing Home I’d like.
Wish my kids didn’t tell me I should move closer to them (or in with them) and lose the few contacts I have.
Wish my wheelchair tires didn’t track in mud.
Wish I didn’t have to stay indoors alone on cold, rainy, or snowy days that last for weeks and weeks.
Wish I didn't worry about what the new meds were doing to the rest of my body.
Wish I wasn't so afraid of what would become of me once I can’t get around at all.
Wish I’d saved more money or had unlimited wealth to hire honest health care workers.
Wish someone would just come and take this all away…it gets much too heavy at times.
Wish I’d known about support groups online and how important they are.
Wish Internet service was at a reduced rate (or free) to handicapped folks that can’t get around.
Wish electric rates were reduced for those with power chairs and breathing devices that need plugging in each night.
Wish incontinence products were supplied by Medicare.
Wish I could still dance, even with the Wii.
Wish going to the dentist didn’t cause my body to jerk with spasms.
Wish I could still do my own nails without getting polish all over my fingers.
Wish I could still sew…threading a needle is impossible.
Wish I could still stand at my easel and paint with wild abandon.
Wish I could be with my loved ones when they are taken to the hospital.
Wish I could have sex with reckless glee without fear of peeing the bed.
Wish, when I stumble for words, others wouldn’t look away, then leave as soon as possible.
Wish I could have long discussions without losing the thread of it so quickly.
Wish I didn’t have to write down things IMMEDIATELY after hearing them for fear they are lost forever.
Wish I knew if ever I have the faint aroma of urine.
Wish I knew if I was still lovable.
That is IT. That captures MS, in forty four lines.
Thank you for the gift of your experience Nellie.
And yes, you are, without a doubt, still eminently lovable.
Saturday, March 7, 2009
Pride and Portliness
This is probably going to sound incredibly self indulgent.
Because of muscle spasms I get that can knock me off my feet, wake me up at night and sometimes make it impossible to get out of bed in the morning, I go for a massage about once a week or so.
ACK! I can hear you all now, ‘cry me a river’, ‘you poor thing’, ‘well aren’t you special’, all dripping with sarcasm. But it isn’t like it sounds.
First of all, I go to a chain spa with discounted prices. I am a member, so that reduces the price even more. It is not a fancy place, just a simple set up. I have only been going since I started my new job in July. And, finally, there is never a minute that I don’t fully appreciate how lucky I am to have both the time and the money to do this.
Believe it or not, I don’t even enjoy it that much. It takes time, I have to get naked, it is usually a different therapist each time and everyone is has a different technique. I mean it feels ok, but it is all about relieving the pain for me.
I went tonight and it is a therapist I have never met before. A really sweet young girl. She tells me she read my chart and asks if there is anything special I need. I tell her no, I just can’t have any pressure on my lower back at all. She says, “OK. Do you need a towel for your chest?”
Excuse me??????????
No one has ever asked me this question before, so I am confused and don’t know how to answer. Because I am a mental case, I want to get the answer right. God forbid the massage therapist thinks I am stupid. I think about my chest. It’s under me when I am lying face down and it is under the sheet when I am lying on my back, so when would I use the towel? I’m running the possibilities through my head like a Rolodex. I am tempted to check my chest for moisture that perhaps she can see but I can’t feel. However, I am reluctant to feel myself up in front of a stranger.
I briefly consider bluffing my way out of it, but decide to just fess up. “My chest…?”
She replies, “Yes, because, you know…”
Um, no, actually I don’t. But I am starting to sweat, because I didn’t know there was going to be a test .
She continues, “….some women are more comfortable when there is a towel around their chest when they are lying down.”
Behind the Jeopardy theme music playing in my head, a light bulb is starting to go off. “Yikes!” I say to her, “Don’t tell me it’s written somewhere I have big boobs!” and I gave a nervous laugh like, they wouldn’t, would they?!?!
“Oh no!” she chuckles, as if that is the most preposterous thing in the world, and I start to breathe a sigh of relief.
“It just says ‘top heavy’.”
Oh. My. God.
I can feel my face get hot and I want the floor to swallow me and my apparently freakishly enormous bosom. But that doesn’t happen. The floor stays solid. I don’t disappear into oblivion as I want to do. And now I have to take my clothes off and unleash the Breasts That Swallowed Pittsburgh.
Once I am lying on the table with my face in the little cradle, the tears start. Fortunately, they drip right through the opening unnoticed. I am so embarrassed I just want to go home and curl up under the covers. Better yet, under the bed. Even better still, under the floor boards.
Shit, just dig a hole and bury me.

Two things occur to me:
1) I apparently am way too prideful and need continual lessons in humility.
2) Maybe hanging onto this memory I will finally lose weight.
Because of muscle spasms I get that can knock me off my feet, wake me up at night and sometimes make it impossible to get out of bed in the morning, I go for a massage about once a week or so.
ACK! I can hear you all now, ‘cry me a river’, ‘you poor thing’, ‘well aren’t you special’, all dripping with sarcasm. But it isn’t like it sounds.
First of all, I go to a chain spa with discounted prices. I am a member, so that reduces the price even more. It is not a fancy place, just a simple set up. I have only been going since I started my new job in July. And, finally, there is never a minute that I don’t fully appreciate how lucky I am to have both the time and the money to do this.
Believe it or not, I don’t even enjoy it that much. It takes time, I have to get naked, it is usually a different therapist each time and everyone is has a different technique. I mean it feels ok, but it is all about relieving the pain for me.
I went tonight and it is a therapist I have never met before. A really sweet young girl. She tells me she read my chart and asks if there is anything special I need. I tell her no, I just can’t have any pressure on my lower back at all. She says, “OK. Do you need a towel for your chest?”
Excuse me??????????
No one has ever asked me this question before, so I am confused and don’t know how to answer. Because I am a mental case, I want to get the answer right. God forbid the massage therapist thinks I am stupid. I think about my chest. It’s under me when I am lying face down and it is under the sheet when I am lying on my back, so when would I use the towel? I’m running the possibilities through my head like a Rolodex. I am tempted to check my chest for moisture that perhaps she can see but I can’t feel. However, I am reluctant to feel myself up in front of a stranger.
I briefly consider bluffing my way out of it, but decide to just fess up. “My chest…?”
She replies, “Yes, because, you know…”
Um, no, actually I don’t. But I am starting to sweat, because I didn’t know there was going to be a test .
She continues, “….some women are more comfortable when there is a towel around their chest when they are lying down.”
Behind the Jeopardy theme music playing in my head, a light bulb is starting to go off. “Yikes!” I say to her, “Don’t tell me it’s written somewhere I have big boobs!” and I gave a nervous laugh like, they wouldn’t, would they?!?!
“Oh no!” she chuckles, as if that is the most preposterous thing in the world, and I start to breathe a sigh of relief.
“It just says ‘top heavy’.”
Oh. My. God.
I can feel my face get hot and I want the floor to swallow me and my apparently freakishly enormous bosom. But that doesn’t happen. The floor stays solid. I don’t disappear into oblivion as I want to do. And now I have to take my clothes off and unleash the Breasts That Swallowed Pittsburgh.
Once I am lying on the table with my face in the little cradle, the tears start. Fortunately, they drip right through the opening unnoticed. I am so embarrassed I just want to go home and curl up under the covers. Better yet, under the bed. Even better still, under the floor boards.
Shit, just dig a hole and bury me.

Two things occur to me:
1) I apparently am way too prideful and need continual lessons in humility.
2) Maybe hanging onto this memory I will finally lose weight.
Friday, March 6, 2009
MS Awareness Week: Awareness Wishes
I polled approximately 50 people I know who have MS. This is “Awareness Week”. What would you want people to be aware of in regards to having MS. Here are some of their responses, their ‘wish list’:• That even in "remission" I deal with a barrage of symptoms daily. "Even though I look so good".
• That it sucks!!
• That not only are there the obvious issues with physical problems, but there are also MANY unseen ones: cognitive, bladder, sexual, bowel, TN, etc. (another person added, “A ‘hidden agenda’ of MS symptoms”).
• Fatigue is one of the most devastating effects of MS. It is invisible and very difficult to describe.
• I'd really like all the well-meaning muggles out there to stop sending me newspaper clippings of How to Cure Myself by spritzing my sublingual regions with donkey urine, and stop feeling obliged to mention that Mr or Mrs so-and-so are doing really well on this, that or the other therapy.
• To get people to understand what it means to be "chronic and progressive". That you can't be cured; that you won't "get better", even if you have good days; and the best treatment only slows down the rate you get worse.
• That stress - physical or mental - can royally fuck with us.
• I think I'd like people to be aware that MS is a disease. So many of my acquaintances seem to think it's an illness like a cold, that it will go away. It won't. I'm as good as I'm gonna get.
• That we can seem fine one minute and then totally clusterfucked the next minute...
• I'd like people to understand how CRUSHING it is. It is crushing financially, emotionally, physically and mentally.
• I'd also like people to know, just because you know someone who is worse off, does not mean I am not suffering.
• I would like to see muggles learn more about mobility issues for folks with MS and others. Don't park in handicapped spaces because you're "only running in for a second." Don't try to cut someone off to get out the door before a person using a walker or a chair. You're reflexes are faster than mine, and I can't always stop before I run into you. Don't keep moving your car forward while I'm in a crosswalk. I can't go any faster, so get over yourself! And if you invite me to a party, please make sure I have a place to sit, preferably in a location that allows me to socialize.
Yes, we do indeed call people without MS muggles. Goofy, but what can I say? It’s better than some of the other possibilities. We belong to a club that nobody wants to join, we are entitled to some perks.
One of my friends pointed out yesterday that I am getting many responses from people who already are aware of MS and its devastation. But we really want this message to go to people who had no idea exactly what this MS thing was all about.
We don’t want to climb Mount freaking Everest. We just want to live with as much dignity and autonomy as possible. Just like YOU! So spread the word, PLEASE!! MS is a horrible illness, but it can be tolerable with your help and understanding. With your support for fundraising to find a cure. With your awareness.
My friend Barbie wrote a very pithy little poem that wraps this whole issue up. If nothing else, we People With MS, at least the ones I know, love to laugh:
I have MS, I am a mess.
The doctor tells me not to stress.
My feet are numb, my eyes are blurred
I struggle to find my next word
The meds I take are priced quite high
To keep the faith I try and try
My family cries, “Do this! Do that!”
“You need to rub on Emu fat,
and use stuff we saw on TV!”
“You should get disability!”
They all have answers for my plight
but nothing makes my shit work right
I’ve tried it all and nonetheless
I have MS. I am a mess.
Thanks to all my wonderful, witty, indomitable friends, all PWMS, for your contributions, your enthusiasm and your resilience!!!!
Thursday, March 5, 2009
MS Awareness Week: What to Do, What to Do?
So you find out you have it. You know vaguely what it is, what it does, what it might do. You have an idea what the costs are going to be, monetary, physically and emotionally. What next?Everyone has a different response to having MS, even if their coping styles might be in the same continuum. We are all different, with different priorities and different baggage. Our history and our present circumstances will combine to form the foundation of what our next steps will be.
The possibilities are endless, it would be pointless to list them here. So I am going to share my thoughts, after four years of experience, about what could be the most proactive approach to dealing with something that will be your unwanted guest for the foreseeable future.
Maybe I should start by suggesting some things that might not be in your best interest. Of the things I will cite some...um...most of them are counterproductive behaviors that someone who may or may not be writing this piece did indeed engage in.
• Don’t pretend it will go away on its own.
• Don’t allow your family to ignore it as well.
• Don’t ‘forget’ to take your medicine all the time because it is PREPOSTEROUS that you, someone who had babies at home, have a chronic illness.
• Don’t isolate yourself.
• Don’t make hasty decisions.
• Don’t think your life is over.
• Don’t settle. For anything. Healthcare, information, assistance, anything.
So here are things that could be helpful.
Find out all you can about the illness, whether it has happened to you or a loved one. It is such a cliché, but knowledge is power. Knowing about how the disease works might make you feel less scared. Unfortunately, it may also make you feel a thousand times worse, so make sure you reach out. Talk to someone who will listen without getting too emotional as well, such as a clergyperson or therapist. Someone who can maintain perspective can really help you recover your's as well.
Find a doctor you like and trust, even if it means changing several times. You deserve the best care available. You need someone who will listen and be respectful, someone who will be a partner, not a dictator.
Consider all your treatment options and what impact they will have on your life. Don’t go with the first one offered because it is your doctor’s favorite.
Make sure your family really understands what MS is and what it does to you. Ask for help. Life has changed, you all have to find new roles. Again, if that process is hitting bumps in the road, consider a third party to help coach you along.
If it appeals to you, look for support groups. I am not a big joiner. But I have a group of online friends that I could not survive without. We are all similar in our irreverence, sense of humor and intolerance for platitudes. But that isn’t everyone’s cup of tea. You know yourself better than anyone. If you need a warm fuzzy group get out there and find one.
Keep doing the things you love as much as you can. This is something I am still working on. I am a museum fanatic, but can’t manage the walking anymore. And I am so reluctant to use a wheelchair. I might try a walker as an interim step, but still have to steel myself to that purchase. Do yourself a favor and just go for it. Although even as I say that, I recognize some of us need longer to process things than others (decades in my case). So if you need to take your time, do that. Just don’t close the doors to things that bring you joy.
Involve your family. Make sure they understand how sick you are. This is a huge mistake I have made, still keeping that Superwoman persona going. To my great detriment. Because my children appear to have a really hard time acknowledging I need A LOT of assistance. That is my fault entirely for allowing the myth to persist.
One thing that I have also found makes me feel empowered is the annual MS fundraising walk. I will be honest up front, the MS Society is not my favorite organization. For one thing, it has MS in its name. Instant dislike. For another, if it was a person, it would be so freaking perky. I hate perky. And I, along with my fellow MS cranks, find the current ad campaign embarrassing. “Join the Movement”?!?! To some of us with adolescent minds and a bent for scatological humor, ‘movement’ only means one thing. For others of us who were around in the sixties, it is like, come on, is that the best you could do!?!
However, A BIG HOWEVER, the MS Society does really, really good work. Not all the local chapters are the same. For example the chapters in Connecticut and St. Louis earned the highest rating of four stars from Charity Navigator (a GREAT source of information about charities), but the one in Charlotte only has one star. It depends on their local administration. I am so fortunate to live in the northeast, where most of the chapters are powerhouses of assistance. They provide information, aid, classes, support, encouragement and fundraising.
The National MS Society has a good ratio of programs funded to administrative costs. More than eighty five percent of all dollars raised goes to help people with MS. Some of the local chapters do even better. Some examples for comparison: the American Cancer Society uses only 68.4%, the National Organization on Disability, 64.7% and the American Foundation for the Blind, 69.2%.
The MS Walk takes place nationwide and in our area it is on the third Sunday in April. When I take part, I feel as though I am doing something proactive for all of us with MS. Some of the money goes directly for programs, but much goes to research to find a cure. The research done over the past years has lead to more and more and more treatment advances, so a cure does not seem impossible.
Plus, the walk can be fun. My team grows every year, and here is my shameless plug: I would LOVE it if you would join Team Cooper this year on the MS Walk. There is no minimum to raise, no minimum to walk. It is a great way to get together with friends and raise money for a good cause.
This link takes you to my personal page at the MS Society website. You can register for our team or make a donation.
Marie's MS Walk Page
Tomorrow I will do my final MS post for this week. I will share what people with MS would really like others to know about having this disease.
Wednesday, March 4, 2009
MS Awareness Week: The Cost of MS

Our culture measures things in what they cost. How much, how little, sales, bargains, luxuries, vanity purchases, so many of these transactions feed our egos and our self concepts.
The costs of MS are both calculable and intangible.
Raw numbers are relatively easy to come by. There are approximately two and a half million people in the world who have MS. In the United States, I am only one of about 300,000. Here are some of the costs to me.
The first things I think of are the medical costs. I have 11 prescriptions, five of which I take every day (8 pills) and five that I take as needed for symptoms such as muscle spasms and pain. Three of the medicines that I need to take every day cost more than $400 each per month. The others are in the neighborhood of $10 to $100 each. If I didn’t have insurance, I would be looking at a total cost of about $1800 every month for medicine I need to function. My co-pays run around $150 instead.
The Tysabri I go for once a month costs approximately $2000. It is another $1500 for the infusion center. I pay a $20 co-pay for the center, nothing for the drug.
Bi-annual MRI’s come in at around $2000 each. I pay nothing.
I have to see three different doctors every three months, on a rotating basis. Another $20 a pop, insurance picking up the rest.
So go ahead and complain about managed care.
I am one of the extraordinarily lucky ones still able to work. What is even better, I work from home. But I was out of work for ten months before I started this job in July. In the two years preceding, I was ‘laid off’ from two different executive level positions within days of ‘coming out’ with MS. Illegal you think? Yeah, try to prove it. Two lawyers got me great packages (tacit admissions of guilt). But court battles would have cost me more emotionally and financially than I was willing to spend.
In four years I have only missed ten days of work due to MS, five consecutive days each time, each time because I was in the hospital. I know how fortunate I am to have that record.
But let’s consider the cost of other kinds of time. Time to order the prescriptions, time to pick them up, a half a day out of work each month for the Tysabri (that I make up during the rest of the week, working longer hours the other days or sometimes on Saturday), at least one doctor visit a month. About eight hours a month there. One business day.
There is also the time I can’t cook, I can’t do laundry, I can’t clean my house. Doing anything physical takes longer. Others have to do it or I have to spend twice as long when I am well enough. There is time I would love to be going to the movies, playing with my grandson, knitting. But I have to rest instead because I am too weak and in too much pain to do anything else.
In the meantime, there is the cost of discouragement. If I can’t clean, I can’t have people over, which is one of my favorite things in the world to do. I lie in bed, or sit on the couch looking at what I want to do, dusting, vacuuming, baking, trivial stuff, I know, but I desperately I miss who I used to be. Another cost.
There is the cost of independence. No more walks in the city. No more shoveling snow (I liked shoveling snow!). No more painting a room on a whim. No more getting on a step stool to wash the curtains when they need it.
The self-conscious clumsiness of using a cane or a wheelchair. Looking at a curb, wondering if you will be able to get your leg up high enough to negotiate it. Sitting all through a church service.
For other people with MS, there is the very real permanent cost of a job, voluntarily or involuntarily, either by being subtly discriminated against or by being forced to go on disability because of your health. Estimates are that it can cost up to $100000 annually per person with MS in lost wages, lost productivity and cost of medical care.
There are almost no resources available for the jobless MS person who could train for another position and continue to contribute their talents to our society. Some people do manage it, reinventing themselves, finding new, less physically strenuous careers. But that takes a perfect storm of support, finances and wherewithal. For many of us, one missing piece means you simply cannot get to another place. Considering the brilliant people I know with MS, that is the biggest, most tragic loss of all. Loss of viable, gifted, marvelous participants in our lives.
There are of course also the permanent losses through death of wonderful, anonymous people known only to the ones who loved and miss them. And the more public losses of stunning talents like Jacqueline du Pré and Richard Pryor.
MS can cost people their spouses, their friends, their sense of who they are. One friend with MS tells me, “If I could tell the world what having MS is like, it is the progressive loss of small bits of oneself continually, until there is nothing left to lose. Losing friends, relationships, jobs, wealth, confidence, wellness, independence, optimism, thinking, walking, strength, balance, and sight.”
It is the ultimate thief.
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