Saturday, March 30, 2013

Wouldn't It Be Loverly?

Boo hoo hoo.  Here comes a major whine.  I indulge myself partly because it can be a relief to express the hard stuff, just to get it out there.  But mostly I hope that anyone reading about what I am going through will know they are not alone if they are experiencing similar challenges.  Somehow knowing that can make a difference.

I am woefully behind in posting here.  I am not feeling well and I am just so tired of even thinking about being sick, never mind writing about it.

As the effects of the steroids I got in the hospital wore off, the lymphedema in my legs returned in spades.  The pain is unbelievable, which is a pretty strong statement from someone who had two babies at home.  If I stay completely immobile, it is tolerable, but it is impossible to not move at all!    To simply make a cup of tea is a struggle that most of the time is not even worth it.  It is so much effort to just get into the kitchen that as often as not I don’t even bother with fixing a meal.  You would think between the sheer exertion and the reduction in eating I would be thin as a rail.  But noooooooo.  Not me.  I am the only human being in history who can eat less and gain more.  Additional injustice. 

The shortness of breath is creeping back, so I started another course of steroids today, at home this time, thank goodness.  And hopefully because I am nipping it in the bud, it will resolve quickly.  Although heaven knows what we are going to do to about this as an ongoing issue.  Next week I go back once again to try the lymphedema treatment.  Hopefully this time will be a success.  As far as the paralyzed diaphragm and shortness of breath…the possibility that this will never get better is too scary to contemplate. 

I am feeling overwhelmed by everything.  I worked so hard to achieve what I did in my career.  However, my prior considerable income is now defunct and I have massive financial issues and responsibilities.  But so much is being neglected because I am so sick.  Having all these things hanging over my head just adds to the stress level.

Besides being absorbed by illness, I am also immersed in regrets and melancholy and beating myself up.  Since all I do, practically, is lie in bed, why have I not completed all my thank you notes to all the wonderful people in my life who have visited and been there for me?  I am so self-involved right now I had very little to do with planning my daughter’s wedding this past Saturday.  But she never complained, she managed everything herself and it was a lovely day.  My gorgeous, funny, smart children were all at the wedding.  But seeing them all together just reminded me of how infrequently I see them in everyday life.  I torture myself with self-doubt about my parenting.  I remember every flaw I have as a mother and every misstep I took as a parent.  I desperately wanted to be perfect for them and fell far short of the mark.
In a true coincidence, thirty seven years ago my late husband Dennis and I attended my college senior prom at the very place that Mary Kate’s wedding and reception was held. The Georgian Court College class of 1976 had it's senior prom at Christie's in Wanamassa, which had been there since at least the 1930's.  Now it is the English ManorWe weren't engaged or even serious at that time.  Who knew that someday we would even have a daughter, never mind that our daughter would be getting married right where we were sitting!   Or that I would eventually buy my own cherished home just a few blocks away?  I was consumed with memories and a sense of incredible poignancy the whole evening.

A decade ago, as I became more and more independent and financially secure, I had envisioned myself at this point in my life maybe working overseas for a while.  My dream was to live in London for a year or two.  I never imagined I would not only not be traveling, but I would be losing everything I worked so hard for and would need another person to help me bathe and dress.


Despite all these complaints, I really am not terribly greedy.  This song popped into my head the other day as an example of how simple my wants really are:

Listening to it again made me so nostalgic and triggered so many more memories!  My father is the one who introduced me to Broadway musicals, he had dozens of records that I listened to all the time and My Fair Lady was one of my favorites.   He had the original recording, with the Hirschfeld illustration of George Bernard Shaw in Heaven, manipulating Professor Higgins and Eliza like marionettes.  It makes me smile because of course I thought Shaw was actually God: an old man with a beard in Heaven = God.  I knew every word to every song and sang along with gusto.  I was such a little ham.

When I was in college I was in a production of Pygmalion and I played Colonel Pickering, Professor Higgins best friend.  (What can I say, it was an all girl’s school.)  My only line was “By Jove, Eliza, the streets will be full of men shooting themselves for you.”  Instead, during one rehearsal I said, “By Jove, Eliza, the streets will be full of men shooting at you!”  That was it, we could never get through that scene without dissolving into giggles. 

For years, when I was little, every Saturday my father drove from the Bronx to Yonkers for me to have my ballet lessons with my cousins. In the car both ways we would sing all sorts of old songs.  This memory is especially precious because it really was the only time I was ever alone with my father, the only time he appeared to even acknowledge my existence.  I don’t mean that as a criticism, just as a fact.  My poor parents were not suited to have children and didn’t know quite what to do with us.  I don’t think it ever occurred to them we could be fun.

I think, for me, the worst part about dealing with all the sickness and loss is going through it with no partner, no one to share the burden, no one to commiserate with.  Friends are a true gift, but still different from a single, loving individual.  How I long for someone’s head resting on my knee, warm and tender as he can be, who’ll take good care of me.   Really, when you consider it, something we all need and deserve.

Wouldn’t it be loverly?


Did you like what you read? Let others know. Thanks!


Judy said...

It would be loverly, indeed. And, yes, sometimes I yearn for things in the category of "if only." The rest of that phrase is "I did not have MS." Coincidentally, this general topic was the subject of my latest posted poem.

Might Have Beens
It happens sometimes.
Longing for what might have been
holds me in its grip.

I cannot but think
I could have done so much more
with my potential.

I can never know
what heights I might have scaled
if not for MS.

Muffie said...

Ah, Marie, my heart aches for all you've been through with this rotten disease. You reminded me of my love for Broadway musicals, too. I had the very same MFL album, and I knew every lyric of every song (still do!) I once had my students perform MFL and I can still see them on that stage, dancing and singing. Those were great days for me, but as you, I can no longer do much of anything.

I'm going to take a page from your book and get some treatment for this lymphodema of mine. I know it's having a negative effect on my walking as well as my circulation. I only have two pair of shoes that fit over this grotesque foot anymore.

I hope things get better for you soon. And there's no doubt in my mind that you were a great mother. I think when we get low, we just see everything as a negative.

Sending prayers and good thoughts your way!


Jane Turley said...

You have been dealt some heavy blows, Marie:( But you absolutely must keep fighting!

I concur with Muffie: I am sure you were a brilliant mother! You can only influence your cildren so much and then will go their own path whatever you've said or done. If it's any comfort I think I was a brilliant mother to my Sam (now 21) but did that stop him forgetting Mother's day, My Birthday and not answering my emails and texts since Christmas? NO! Eventually, I drove done to his student flat last Thursday to check he was still alive - turns out he was. In fact at 12pm he was still asleep in his bed. Hmm.

Marie said...

Judy - thanks so much for sharing your beautiful thoughts and words. You touch so many hearts, you have scaled many heights DESPITE the MS!

Muffie - thank you also for your comforting words. Being a mother was the best thing in my life. I had so much fun with my children. Yes, there is no doubt I had my moments, as we all do, but I was devoted to them. I am crushed by the way they have responded to me being sick.

NOW - please, please, please go get treatment for that lymphedema! It just gets worse without it and it is very responsive to the decompression treatment.

Keep on dancing to those musicals in your heart! :)

Jane - you have been so much on my mind. What did we do to deserve such treatment?!? Of course you were/are a brilliant mother! And only 12 pm was it that Master Sam was abed? HA! Mine have waaay undone that record. And my current personal favorite came tonight when my daughter advised me that if I wasn't so overweight I wouldn't be so sick. Nothing like another kick when I'm down. I can't exercise anymore, I eat less than she does, I take medication that causes weight gain, but having a paralyzed diaphragm is my fault because I am fat.

I wish I had a cunning plan. **sigh**

Love you though, Mrs. T. xoxo

Love you all for that matter, for your kindness, for your warm hearts and words. Thank you for keeping me afloat.

Anonymous said...
This comment has been removed by a blog administrator.
Shorespinner said...

Congratulations to the happy couple, and the happy mother! I hope the steroids help with the breathing, and the lymphedema treatment with your legs. And I wish we could have tea together again soon!

Anonymous said...

so sad :( well did you at least get to help out with your other daughters wedding that took place last year?