Mortality, Perspective and Balance

Mortality has been on my mind a lot.  It’s a milestone year for me and I am feeling it, particularly since my mobility is impaired and seems to be worsening.  I hope I have many years ahead of me, good years but you just don’t know.  I live fairly locally to where I grew up so I was reading the local obituaries to see whose parents had died.  And then people’s ages were getting too close to mine and I even knew some of them.  It started to drag me down so I stopped.

Last week I received a call that one of my exes had a massive heart attack and was in a medically induced coma and the prognosis was not good.  This was someone I had lived with for a few years.  When I left him, he said “But we were going to get married”  Nice of him to let me know.  He wasn’t the first.  I left someone else who then showed me a polaroid of the engagement ring he was paying off on for me.

Joebe passed away on Thursday night and I got the call Friday.  I really thought he was stubborn and cantankerous enough to come out of this.  He never regained consciousness.  This is who he was, he thought he was having a heart attack so he drove himself to the doctor.  Just what they tell you not to do.  My husband has been upset because all week, of course,  Joebe has been in my thoughts.  I have been reminiscing. He doesn’t mind the reminiscing.  They are not happy memories. He does not like that.   I cannot help it.  I am trying hard to remember some happy times.  He was controlling and emotionally abusive.  It is what it is and he was physically abusive just that one time.  I tried explaining to my husband that remembering the bad times is not bad.  I put on the card for the flowers “You changed my life” and he did.  I learned all kinds of things about myself.  I learned how much stronger I was than I thought.

It’s ironic, it’s March.  I met him in March, 21 or 22 years ago.  I never go out on St. Pat’s but a friend, Joe S asked me to go with him as a favor to some event or other.  Joe T called and asked me to hang out so I said next week.  Next week, I went to hang with Joe T and met Joebe.  My parents couldn’t stand him as he was much older than me.  I was living at home after my first marriage broke up and he would call and say “It’s Joe”  and they would say “Which one?”  Drove him insane.  He was jealous and insecure.  He did make me look at where I was jobwise.  I had fallen on really bad times when my first marriage had broken up and was answering phones.  I applied for another job like that and he told me if I kept on looking at the same jobs I would be in the same place.  I left him when I got the job I have now.  At the time I jumped my salary by 50%.  With bonuses the first year, I made more than he did.  We never really stopped talking and this truly irked him, a man of his age being bested by a little girl. He never thought I was very smart and I am.  I am one of the first women at an all boys school and he always said that I got in because I was a girl.  We went to a 25th anniversary of the admission of women and the former president said that admissions my year were blind.  It was incredibly liberating.  Joebe scoffed and said they lied.

He bought me a house.  One of the reasons he bought this particular house was the day we looked at it, three swans floated up.  It was on water and I am tresswann.

I am preparing to go to his funeral this afternoon with my husband.  My husband always maintains that Joebe was my husband.  I lived with him longer than I did my first husband and had more of a relationship with him.

I have kept on saying all week, this is weird.  This afternoon is going to be weird.  I was at the wedding of both of his children, the christening of two of his three grandchildren.  He was one of 5 brothers.  The family liked me.  I have not seen these people in years.  I am going to have to walk into this with a cane.  My husband says to leave the cane behind and he will hold me.  I am blessed.  Things work out the way they are supposed to work out.  I had a really close friend die when I was with Joebe.  He knew him.  He refused to come with me to the wake or funeral.  Walking in alone was one of the hardest things I had done up to that point  in my life.  See, what doesn’t kill you will make you stronger.  Today, I will not be alone.  I will be supported by love.

So, perspective too.  On Thursday, I received a call from my agent indicating that he had been told I am not getting a raise for this year.  Can I say livid is too mild a word?  Yes, I worked remotely for most of January and February but I put in mega hours.  I give heart and soul and do excellent work.  I am not just saying this.  And I am hurt by this.  I will address it when I get into the office this week.  But coming in conjunction with Joebe’s death, it’s time to take another look.  If they think I am doing a less than adequate job which is what a non raise indicates to me then I can and will cut back.  If I cut my hours, I cut my income.  What’s money at the end of the day as long as the bills are paid?  Working less hours will let me get home earlier and when I am home earlier and not putting in extra hours, I can do more “me” stuff.  How about the gym? How about art and writing?

I am a Libra and as odd as it sounds, I need to be in balance.  I have been out of balance.  This manifests itself in my health.  Oh, and a side note on stress, I left Joebe and started a new job all in the same month, not too crazy.  I am moving towards this milestone birthday with trepidation.  I am taking these two events as a sign to get back in balance.  Maybe regain my physical sense of balance. We truly do not know when our last day will be.  I don’t want the rest of whatever time I have to be filled with regrets or what ifs.   Carpe Diem.

Fatigue, Fantasies and Husbands

I fantasize about sleep.   I count days and hours until I can sleep.  I roll over in bed and think either this time tomorrow I’ll be sleeping or this time tomorrow I’ll be awake.    I have to get up for work some time between say 4:10 a.m. and 4:30 a.m. four mornings a week.  One of the effects of the condition I have is supposed to be fatigue.  However,   my doctors say with the hours I keep, who can tell?  I see their heads nod and eye droop when I describe my hours and my schedule.  They say anyone would be fatigued given that schedule.  And I am getting older.  It’s just a fact.  I have read that as we age, we need less sleep.  NOT!  Ok, so maybe we don’t need it to grow, that doesn’t mean our bodies and minds don’t want it.

I keep memories of a good sleep like notes on a good bottle of wine.  I still remember the sweet deepness of sleep the night of Hurricane Sandy.  I had one almost as good the night of a blizzard last month.

I guard my sleep ferociously.

I have been to the office only three times this month.  Yes, a few hours more sleep but much less walking.  Here’s my vicious cycle, the less I walk, the less I am able to walk.   We have been trying to compensate by having me do the stepper every night but still I have been coming in at most around 5,000 steps.  A normal day for me at work is over 7,000 and I used to get to 10,000 or more.    I did go into work this past Thursday and could barely walk.  It was bad.  My husband doesn’t understand that I just can’t stop when I am working remotely and do 15 minutes on the stepper. Plus, it’s not the same as walking.  I have tried to get in 30 active minutes a day.

Yesterday, we set up the treadmill upstairs.  My plan is to go on it in the morning when I drink my coffee.  We’ll see.    Yesterday I struggled to do 5 minutes on it.  My goal for today is 6 minutes.

Confession – I have been lax with my PT exercises.  I was really on it for awhile and then it just started fading away.  I was doing abs every night and then I fell.  It hurt too much.  I am hoping to start again this evening.

Cut to last night.  3:50 a.m.  Husband gets up.  “I have been thinking and I have decided”.  This is when I call him Jack because he sounds just like his father.  ” You know I dream things through, you know how I used to help you with your exercises?  Well, I really can’t now because of the operation”.  Then he went through all the exercises I am supposed to do and what he could or could not do.  Told me I couldn’t do 10,000 steps today as I had only done 3500 yesterday but I would do 6000 today.  I would do the PT twice on weekends but not during the week as I certainly can’t get up before 4.  And maybe, he will create a spreadsheet to track everything.  Now I know he’s talking in his sleep because spreadsheet is not a word he uses.  He has the remarkable ability to have complete literate conversations when he is completely asleep.   And I am looking at the clock thinking “this time tomorrow I will have 20 minutes more to sleep”.  I can’t hit him because of the operation.  I drifted off.  This morning he has a vague recollection of the whole thing but says it goes to show I am always thinking about you.

Not Inspiring

Ok, so I use the spectral leg and a cane, a very pretty one at that.  I work in New York City and commute every day.  I wake a little after 4 in the morning and am at my desk, smiling by 7:30 in the morning.  What most people do not see is the struggle sometimes to make that walk into the office.  I count that as one of the upsides of early.

I try and go to Zumba two nights a week.  It’s a class I have been going  to for several years.  And yes,  I have been able to do less and less.  But I still go. The music connects me with my mother and my family.  We played some of those songs when I was growing up.  And as a family, we always danced.

I am a person.  I am not a condition or an illness.

I hate it when people tell me I am inspiring.  With one major exception,  which I will discuss in a moment.

I hate when people say ” I don’t see how you do it.”  Again, it’s my life.  What am  I going to do, crawl into a cave of illness and defeat?  Why wouldn’t I do it?  Where is self-pity going to get me? It’s not going to help or make things better.  Ditto the “you are so brave”.  Why?  If I don’t wake up in the morning and go, what is there?  I am not brave, I am freaking terrified.  In terms of bravery there is so much more in this world to be brave about other than living a quotidian life.  I belonged to a group when this journey started and one of the women had a granddaughter who was 9 and had something wrong with her ankles.  If I remember correctly, they were disintegrating.  That’s brave.  Her family was brave and strong.  Me, getting up and living my life is not brave.

I always try and tell people when they tell me I am inspiring that I am not.  I do not live nor wish to live a poster child life.   This is my life and my reality.

Ok, there is one instance where I don’t mind as much about the inspiration thing. Yes, you  Jessica Campbell.  Check out her blog MS and Fabulous.  When it comes from someone who is going through what you are going through then it’s alright.  I am awed by Jessica.  There are people who confront these issues daily with style and true grace.  They are inspiring.  I am honored to even be thought of in that company.

I appreciate all my friends who support me and encourage me.  I am grateful for them.  I guess it’s the “outsiders” who consider my daily life inspiring.  It is not.  Choosing to live with a little mobility issue is not inspiring!

We all have issues that we confront. The ones I confront may just be more visually apparent.  And who knows?  My challenges may be so much less than what they appear.

February Warrior Check In

Back for February:

How do I feel today – Still in the winter blues.  I have been doing a lot of work.  It’s  a mixed feeling.  I enjoy what I do but I am working flat out.  This is my 13th straight day.  I don’t think I am getting the validation  I want.  Is that important enough?  And I watched the last episode of Parenthood and wailed.  All the possibilities that life could have.  Could have, would have, should have.  There’s just the now.  And it is finite.  That milestone looms and is dragging me down.

What did you do for yourself today?   Not much.  I worked which in a twisted way is for me.  I need to get away from that because seriously, in the past giving my all to someone else has never worked for me.

What did I eat today and how did it make me feel – Well it was mixed and I really didn’t do well.  I started off with an apple streusel (non gluten muffin)  I had some nuts.  I made a pina colada smoothie.  It tasted like a pina colada and I can’t stand pina coladas!  But for dinner I had steak with my husband.  I don’t like steak particularly and it’s so not on Swank.  I made some great mango sorbet.

Did I exercise? What did I do? How did it feel – Well, this hasn’t been a banner week or month.  I have literally been housebound and working 10 hours a day.  Today I did the stepper for 45 minutes.  Not enough.  I have been spotty on the abs and I have not been to the gym or Zumba.

For whom or what are you grateful? What matters most in life? Grateful as usual to be warm safe and dry.  I have a job.  I have possibilities.  I have people who love and care for me.  Same as last month.  This month I am thinking of my husband and how he stands by me.

Do I have a higher purpose or driving force in my life?   Make a mission statement – Ha,  higher purpose is for childish dreams.  Still thinking about a mission. Driving force in my life is to be remembered, to live after I die through love?

How long have I been treated with conventional medicine Not this month but I read about glutathione and I am thinking about it.

The first time I had a symptom – June 2004 walking on the beach boardwalk

What symptoms are most troublesome – Duh, gradually losing my ability to walk and being dependent.

Do I blame myself for things –  Yes, I am still blaming myself for not being aggressive against this.

How is stress level? It’s high.  Lot of pressure on the job.  Finance has eased a bit with the ridiculous hours.

What can I do tomorrow to make it better than today?   Start over.  It’s a new month.  I still have new days.

Until next month.

Vanity, the Spectral Leg and Vows

cropped-shoe-with-brace.jpgI have always been consumed with the way I looked.  I joke “Clothing is my life”.  I can look at a picture and know by the clothes I was wearing what was going on.  It’s how I express myself.  For example, at a certain period in my life, if I was wearing pants to work, it meant I was unhappy and didn’t want to be at that job.

I grew up in a household where “ladies didn’t wear trousers”.

And I was/am a dress and heels kind of woman.  People would say Oh we are getting older now we don’t need to wear heels.  Or isn’t it wonderful that flats are in fashion.  NOT.

I used to walk a 15 – 17 minute mile.

When I went to get fitted for the spectral leg as I call my brace or as the doctor calls it my appliance, the ortho guy told me I would never wear a skirt or heels again and I would have one on both legs and probably my hands.  Can I tell you I will never go to that man again or recommend him?

I still have only one spectral leg which I am actively looking to ditch.  I do still wear skirts and therein is the problem.  I used to take the spectral leg off at work and wear reasonable kitten heels or flats.  Somewhere along the line, I began to fear and kept the spectral on all day.  I had some relatively cute black lace oxfords for summer.  I bought a sensible pair of black oxfords in the fall.  Doesn’t that sound awful – sensible black oxfords?  And I bought some wonderful clothes – beautiful sheath dresses, a skirt with panels.  They look great when I am seated or when I am behind something but the full length?  It’s horrid. It makes me feel really old and ugly.

This is bad for my health, seriously.  My image is intrinsically part of who I am and if I am feeling old and ugly, it’s not good.  I don’t want to hear the nonsense about blah, blah well you are lucky you can still walk.  Uh, I get that but there’s more to me.  And I said when this whole thing started I wasn’t going to let it define me and those freaking shoes do.

So, I keep on looking for something that will be less obtrusive.  Mail order hasn’t been working.  Today we went to Lord and Taylor, one of my favorite stores.  Major shoe sale.  My husband says let’s try it, It’s the first time I have tried to try on shoes in public.  The spectral leg just hung out.  I tried to try on three pairs of shoes.  It did not go well.  And then my husband put the appliance back in the sneaker (it’s the weekend) tied my shoe and covered my leg with my pants.  The salesgirl (she was young) just stood there and said “Wow, till death do us part and all”.  I said “Things happen and life keeps on changing.”  It’s one of my mottos.

But this is not the life we thought about.

We have been through a lot together, sometimes me, sometimes him.  Who knew those vows really meant something?  I am amazed and grateful that we are doing the “in sickness and in health”.  They are not just words.  They are our reality.

One of my doctors said she had noticed a spiritual evolution in me.  I don’t see it.  But there are moments like today with my husband on his knees in a department store helping me that I know grace.

Drinking the Kool Aid

My old manager always said when someone bought into something that they had drunk the Kool-Aid.  It wasn’t necessarily a good thing.  It was definitely an illusion to Jonestown and he didn’t mean it positively.

Oh, and he never said that about me.

I am not a Kool Aid drinker.  When I was little and everyone had birthday parties with Kool Aid, I didn’t drink it.  I am told it made me sick.  My mother, who was very advanced for her time, didn’t believe in it.  No sugary drinks for us.  I didn’t drink soda till junior high.  I digress.  This is about Kool Aid.  Well, not really. It’s about buying into something whole heartedly.  I don’t think I ever do.

I have written about my mother and her force and determination.  Well, my Dad was a non-Kool Aid drinker.  He was always skeptical about everything.  He always took a step back.  It was something we argued about.

However,  I never ran with the pack or the clique.  My mother used to say that I conformed to non-conformity. I probably still do.  I pick and I choose.

That’s what I am doing with this food thing.  Picking and choosing.  After all, I am the editor’s daughter.  In addition to writing, he was an editor. I know I edit.

And I don’t commit.  It’s my failing.  I have had more than one manager at work who has said if I ever committed I would be frightening.  And as to relationships…….  My sister friends I commit to with a fierce loyalty.  For them I would drink the Kool Aid and I do drink the Kool Aid of friendship.  Men were another story.

So, where does this leave me?  Do I drink the Kool Aid of this way of eating?  Can I drink it?  Maybe Kool Aid isn’t right for me?

I read all these people that are drinking it and getting personally filtered water and questioning everything they eat.  Have you ever been out to eat with one of those people who question the wait staff?  And then basically want it cooked without anything?    Like why bother to go out to eat?  I think that makes it uncomfortable for everyone. But the people who succeed appear to be fanatic.  I was raised in a household where fanaticism was antithetical to our being.  Also, funny enough, I am a Libra.  Whilst I may not buy into the whole astrology thing (there goes the Kool Aid again) I need balance.  To be that extreme, puts me out of balance.

What I do need to do is finally, ultimately commit to me.  If I make that leap then I can eat the way that will help me. I can rise.


What would Reima Do?

REIMA 1940'S - 50'S

Reima was my mother. I am literally her pale shadow. One of the things I am deeply grateful for is that my mother passed away before she could see me like this. Two of my mother’s best friends at different times had MS and they both died. In fact, one of my earliest memories is walking with my mother and her friend and a stroller. I don’t think it was for me and there were two little brothers. I am not sure which one it might have been for. I was very, very little. Her friend had an attack and Reima had her walk with the stroller. Looking back on it, it must have been terrifying for all of them. They were young, alone with anywhere from 2 -4 little kids. She got worse and died before I was 10. We moved and there was a friend on our block. She became wheelchair bound quickly. She, too, died from this. So, when they told me that this wouldn’t kill me, I wasn’t buying any part of it.

More about Reima – she had a very high tolerance for pain. She thought childbirth was vastly overrated. She used to get her teeth drilled without anything. She maintained the same weight for just about her whole life – 7 pounds more than before she became pregnant with me. She made sure that she weighed the same every year when she went to the doctor. When she decided to quit smoking, she just stopped and yes, she didn’t gain an ounce! When she made up her mind to do something, she just did it. She came to this country essentially by herself because she wanted to.

So if my mother Reima was confronted with this and knew that it could be addressed with not having certain foods, it would have been done immediately, no question, no hesitation. And then there’s me. I want to, I need to and I am not. Well, I gave up gluten. I no longer have yogurt. Practically no eggs. Almost no red meat, never really been my thing. But no beans, no soy, no apples, no bananas (depending on who you read) no eggplant, tomato, maybe corn, no shellfish.   I like fish and chicken. I like grilled things. Reima didn’t believe in deep frying. She was way in advance of her time in terms of food.

So, I need to think what would Reima do and do it.

Working and 9 Cups

I am taking elements from all the different ways of eating I have been exploring: Wahls, Swank, Clean Cuisine, MS Diet. I am trying to take the best of everything and maybe create something will work for me and on me. Well, I really like the concepts of 9 cups of fruits and vegetables a day. However, another thing I have noticed (and I am truly grateful this does not apply to me) is that these people were so disabled they could not work.   I work. I wake around 4 a.m. every morning, commute close to two hours each way and though I tend to demur, some people say I have a pretty high powered job. So, back to the 9 cups. Yesterday, Sunday, I set up some smoothies in advance. Smoothies are a great way to get in vegetables, fruits and nutrients. There is one I adore from Sparkpeople that sets me up for four cups – two cups of kale, one cup of blueberries and a banana. As I mentioned earlier, I wake around 4 a.m. I am a morning person. Most mornings I wake with a smile, literally. I am one of those people, people hate in the morning. I will beam and tell you we are going to have a great day. I can do this without coffee. I prefer coffee. However, cheerful and all does not do blender in the morning, even weekend later mornings. So, I thought I’d set myself up for success this week by making a few yesterday. It took nearly an hour! Oh, and by the way, I am a good cook so I know how to do my mise en place etc. Back to 9 so I am going to work, no private office, lots of meeting, interaction and commuting. There are logistics involved here.

I do have issues so there is literally only so much I can physically take into work with me. There is that long commute, most of it on public transport. Therefore, I am not using the public facilities. I have to time this!

Next is prep. Uh, my energy is kinda limited. My husband helps but.. And then actually eating all this. And it’s not the only thing I need to eat.

So how do you eat this healthily and correctly and hold down a job without lots of help? I know I have to focus on my health but work too and uh, yea, that exercise thing and getting enough sleep?   Just sayin’

Warrior Questions

Even though I am not a Wahl’s warrior, I think her questionnaire is a good way to start the year so here goes:

How do I feel today – Well, I have the usual New Year’s blues. I am always fearful of the New Year. I know what I had. I survived it. I am still literally standing today. I don’t know what the New Year will bring, the vast uncharted territory. We saw Life of Pi this past week and it’s sort of how I feel. I am embarking on a journey without a map with something that wants to destroy me. I should have the power and the tools to tame it. Can I? As to the physical, I tried some basic lift your leg exercises and my left which is supposed to be the good one, is for crap. I feel slightly determined and slightly overwhelmed today.

What did you do for yourself today? I finished reading a trashy novel with breakfast which felt great and here I am writing which has always worked for me. And I am going to finish listening to Serial

What did I eat today and how did it make me feel – Day isn’t over but I started positively with homemade granola and a cranberry smoothie.

Did I exercise? What did I do? How did it feel – Exercise, see above and I hope to get back to my abs.

For whom or what are you grateful? What matters most in life? Grateful as usual to be warm safe and dry. I have a job. I have possibilities. I have people who love and care for me.

Do I have a higher purpose or driving force in my life?   Make a mission statement – Ha, higher purpose is for childish dreams. Driving force – pay my bills and continue to walk. Mission statement -beyond me at this point. Something about sharing my journey. It’s self serving

How long have I been treated with conventional medicine Well, they haven’t really treated me now, have they? I have the spectral leg aka the brace. I was going to physical therapy. I did acupuncture for two years.

The first time I had a symptom – June 2004 walking on the beach boardwalk

What symptoms are most troublesome – Duh, gradually losing my ability to walk and being dependent.

Do I blame myself for things – Sure, being stupidly cheap and not getting the hole in my mouth fixed. I think a virus amok kickstarted this. Not searching hard enough or asking the right questions. Not being aggressive enough.

How is stress level? Not as bad as it’s been. Financially, things are frightening! It’s on me. I don’t want to keep on getting up at 4 something. It’s not healthy for me on all kinds of levels and I can’t see my way out. Time challenges. And then all that walking in public areas that I struggle with

What can I do tomorrow to make it better than today?   Well, eat properly, exercise and breathe. Make a plan.

I will do this questionnaire at the beginning of the month. And let’s be real, on the weekend.