When Does Life Become Unlivable? Thinking of Frida

Dearest Readers, rest your minds, I am not there yet.

Today is rainy and soggy.  The ground is thawing out in our Spring Thaw, which is a prelude to actual Mud Season.  I grew up mostly in New England where there is a time of year called Mud Season, generally starting the end of February and going on and off through March.  It’s a beastly time because everything from horses to tractors–not to mention cars and pickup trucks–gets bogged down in the mud.  You can’t get any “purchase” (traction) because under the foot-and-a-half of mud is the frost line from the winter, which will stay frozen even into May, as any New England gravedigger will tell you.

What this weather means for me is misery.  My hands hurt.  My hips hurt.  My neck is even now packed in pillows so I don’t forget and move it.  Et cetera, ad nauseam.  Oh and my asthma is suffocating me.  Go away, damn it, and let me just LIVE!!!

I saw my orthopedist this morning for another cortisone shot into my right shoulder.  Unlike last time, when the needle slid in so easily I didn’t even feel it, he had to do quite a bit of wudging around till he was able to get the needle into the joint.  It hurt.

I remarked on this, in a casual tone, like this:  “Fuck a duck, Doc, what the hell are trying to do to me???”

Actually I did not frame it in those terms, more because I know that all 6’5″ 300 lb of him are made of good nature and kindness–he and his saintly wife have, on top of their own eight children, adopted eight more, all of them older children who needed a good home.  Even if he wasn’t on the short list for sainthood I would still try to maintain a modicum of dignity and say something more like, “Sonofabitch, Doc, that hurts!”

He grinned and mentioned casually that I am certainly going to need that shoulder operated on at some point, as the joint is proliferating with calcium deposits that will need to be “scraped off” (oh, I don’t like the sound of that!) so they don’t tear up the muscles.

Here my vision goes blank and all I can see is my father lumbering along with his elbows stuck out to the sides like a chimpanzee, because both of his shoulders had frozen up….eventually becoming bone-on-bone.  He was literally stuck, couldn’t do anything with his hands–and he was a ceramic artist.  Hell on Earth.  And it didn’t stop there.  The arthritis ate his spine, just like it’s been slowly but surely eating mine since the 1980’s.

I had emergency surgery on my neck in 1987 for a ruptured disc that was pressing on my spinal cord.  Over the next 3 years I ruptured 4 more.  The spine surgeons proposed installing steel rods on either side of mine spine–no thanks!  I’m a dancer, a horse-and-dog trainer, a hiker, an aspiring Yogini.  A rigid spine does not suit my lifestyle.  So I spent 12 months in a Minerva Jacket, which is a hard plastic shell that the brace shop guy molded directly to my Stockinet encased torso, from just below the armpits to just above the groin, so that I could kind of sit.  It had Velcro fasteners in front.  I was to be encased in this walking tomb for 23 3/4 hours a day–with 15 minutes off to bathe.  I admit that I had to take the damn thing off at night.  Nobody could sleep with that thing cutting into your skin no matter how many layers of cast padding, etc., they fixed up for me to try to make it more comfortable.  I even coaxed the brace shop guy (“You have a perfect hourglass figure…!  He crooned, while I was immobilized in plaster yet again…stupid sod, I thought, only worse) into punching hundreds of 1 cm holes in the thing when it got to be summer and I was overheating in it.

Yah.  I spent that entire year standing up 120 hours a week–my work week–because the tension on my spine from sitting down sent the nerve pain all the way into my feet, and all the way into my hands.  But I soldiered on.  I refused to let the pain stop me.  I was young, and had the iron will that sustains my people.

Look, I follow a lot of people who have it much worse than I do.  Much, much worse.  And they keep right on living, kvetching now and then as is their right.

But I am staring into the face of a dilemma, which is:  I can’t work if I can’t look down.

Say what?

I can’t work if I can’t look down.  Not at my regular streams of income, at any rate.

I had to give up practicing regular medicine, not exclusively because of my brain, which wasn’t doing so well either but got right-side-up very quickly once I got the proper diagnosis and the proper meds, but mostly because my hands gave out due to whatever it is that is eating away at my connective tissue.

So I relied upon my acupuncture training.  Palpating meridians and slipping needles into the right places takes no strength at all.  But damn it, the last few treatments I’ve done, I swear I’ve squawked as much as my client!  I can’t look down without incurring an acute, unremitting ache that spreads into my shoulders and down my arms.  Nerve pain.

Writing.  I don’t sell much yet, but then I haven’t made much of an effort.  I get going with writing and at some point my hands seize up and won’t work at all.  I am experimenting with Dragon Dictate.  It is a pain in the arse, but many people swear by it (I swear at it, cliches be damned!).  I’m starting a proofreading and copyediting business.  That should be a good income stream, if I can market it successfully.  There must be a way to mark-up copy using Dragon or something, right?  At least I can get my computer at eye level.  God, I can’t stop thinking about Frida Kalho.

Money.  At the moment I’m fine.  I made one single good investment in my life, which sustains me now.  That stream of income goes away the moment I turn 65, if I make it that far.  I’m socking away as much as I can, but one little bit of extra expense can throw me seriously in the hole.  It’s unsustainable.  I have to find another way of supporting myself.

This is where the equations meet.  I cannot live as an impoverished cripple.  Please do not play the “Oh, no, you’re going to be just fine” game.  I get that enough from people I live around.

The truth is, I am not and will not be fine.  I have two progressive diseases, and if one doesn’t kill me, the other will make my life a living hell, just as it did to my father.

Dad didn’t want to live like that either, but he got taken by surprise.  It was as if he woke up one morning mostly paralyzed.  He was too bunged up to even take his own life!  So he lived another 5 years in unrelenting pain, totally dependent on the kindness (or unkindness, as the case often was) of others.

When we were alone he would ask me, “How much would it take?”  He was referring to his insulin: how much would it take, to take him out of his misery?  I could not, would not tell him.  He would smile sadly, saying “I know you can’t tell me.”  And we would change the subject.

Gentle readers, there will come a time when those two lines intersect: the downward spiral of my health and productivity, and the linear decline of my ability to sustain myself with food, shelter, medicines, and everything else one needs.

No.  I do not want to enter a nursing facility.  Neither do I want to be dependent on others, which is convenient because there ARE no others to be dependent upon.

I do not want to be locked into a crippled body the way my father was, until he died an excruciating death, screaming out his last hours on earth through blood-filled lungs.

I pray that I will know the right moment.  I pray even more that if there is a Deity, that he/she/it will take me out of this life before I have to make that tough decision.

Pray with me now, dear readers.

Pray that I get to dance at my son’s wedding.

Pray that I get to hold my first grandchild.

Pray that I get to have a sweet, gentle kiss of Death, and go Home before I have to make that tough decision.

Frida’s last diary entry, the night before her not-entirely-accidental death, went something like this:  “I hope my end is joyful, and I hope to God never to return.”

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19 Comments

  1. Laura, I knew some of your suffering, but this is a lot more to take in! My post this morning was with you in mind – Laughter is the Best Medicine! There are limited ways to help, and I thought of laughter & sunshine! Your writing always has me captivated and I hope you can get your fingers back to the keyboard to do more. I also do copyediting (for myself & friends) and think that might be good revenue for you. I’m nominating you for the Premio Dardos Award. It’s given in recognition of cultural, ethical, literary and personal values in creative and original writing. It involves no question to answer or make up, and you only have to pass it along to some fellow bloggers! Minimal work, when you are able to accept it. I’ll post about it within a few days and your name with be on the nomination list. In the meantime, my good thoughts are with you. It’s interesting that Frida gave up studies in medicine to be a painter. A life lived, even with tragedy. Pain and suffering seems to darken life’s path of “stepping stones,” to success. Take care, Christine

    Reply
    • Thank you so much for your kindness, Christine. You know Frida’s sister’s name was Cristina? Have you seen the movie they made about her? It’s very much true to her own memoirs, some in paintings and some in writing. I’ve just ordered a hardcopy book of her own diary in facsimile, the last ten years of her life. Thank you for the award…I don’t “do” awards, but I thank you for the thought!

      Reply
      • Laura, thanks for letting me know you don’t accept awards! No, I haven’t seen the movie, but I’ll research it to find out if it’s on Netflix. I bet the book will be fascinating to read. Let me know about it and I may get it too! Good thoughts & Good Wishes, Christine

        Reply
  2. I love your talk of the mud for I fell in in this week and had to have the paramedics pull me out. I too am getting worse with my physical/medical issues and counted my prescriptions the other day as I filled my pill boxes. I just sat there kinda imobilized for a moment and gave myself a gentle minute of acceptance…..it is tough!

    Reply
  3. oh laura, i understand your quandary, your pain (mental and physical) and would not wish that situation on my worst enemy…i dont have the answers, but i expect you will have them when the time is right, when they are needed. I hope that day is still a long way away.

    Reply
    • Thank you, dear Kat. I know that you know my quandary in your own experience. Religion says that humans are on a different plane than the other animals….with animals most people will not sit by and just let them suffer. I can answer the question “what’s so different about people” from at least five different religious arguments. The problem is, I don’t believe them. I believe IN them, but I don’t belIeve THEM, if that makes any sense at all. The concept of having to suffer for the attonement of sins or misdeeds, I have already seen played out in my dad’s long and agonizing decay. But I am not sure that I myself am meant to take the same route. I don’t know. It will become clear, as you say.

      Reply
  4. I am not clicking Like on this one, but I am sincerely wishing to keep your positive spirit mindful of the challenges from all angles. All my empathy and love 🙂

    Reply
  5. Hello my friend
    I’m sending good wishes your way. I will keep you in my prayers.
    M 🙂

    Reply
  6. What can I say dear. Its easy to preach but only the wearer knows where the shoe pinches.
    I earnestly pray that you get that extra income. Lack of money makes all the miseries worse and the abundance of it make it fairly bearable. It can not take the pain away but atleast it will buy the most expensive pain killers.

    I am sure you will get that money.

    End, we don’t know is when, here or there.

    Love and light
    Ashu

    Reply
    • “Its easy to preach but only the wearer knows where the shoe pinches.” I love that.

      The end will find us, sooner or later, that is true. We never know.

      Love and light back to you, Ashu!

      Reply
  7. Laura, you will most certainly be in my prayers. I understand your thinking of Frida so much. Though my health and pain is certainly less than yours and Fridas, I’ve looked at her as a strong woman (with her own weaknesses) and an amazing artist that I’ve admired since I learned of her. I, too, love to create whether it’s art or jewelry or whatever. It connects me with my Creator and allows me to express things I don’t always have words for. It helps me to cope with my pain (when it’s not too bad that I can’t even create). Frida so artfully expressed her pain in her paintings. I look to her life as inspiration….if she lived through so much pain and so many limitations while keeping her uniqueness and creating beautiful art, then I can make it, too.
    I also can understand your feelings about wanting to end your life on earth before it becomes unbearable since my husband is dealing with the same thing. He has hep c and is in end stage liver disease, but also has multiple other painful problems such as psoriatic arthritis, some lung problem that he hasn’t gotten diagnosed but greatly affects his breathing, depression, ptsd, very painful foot problems, and all the digestive problems that go along w/ liver disease and then some. He hates his life much of the time (no one will prescribe pain meds for him, unbelievably) because he is in such pain and discomfort and is unable to participate in much of life. He talks about dying all the time and I can’t really blame him. We are planning to move to a right to die state after our youngest graduated high school next year, if my husband makes it that long. It’s hurts me so much to see and feel his suffering each and every day.
    I do believe that each of us should have the right to end our life if we are suffering daily with no possibility of relief or getting better. God most likely doesn’t agree with me, but it’s just something I don’t understand…why He doesn’t take the soul to be with him. I wonder this about my mom, as well. She would absolutely *hate* the condition she is in now….late stage Alzheimer’s, unable to speak except in nonsense words or language that doesn’t make sense, unable to care for herself and in so much pain from severe scoliosis and nearly no discs in her neck plus a frozen shoulder and feet and hands severely deformed from Reynaud’s (part of her scleroderma). I mean, Why?! My dad has been gone for over 7 years now and I know he waits for her in Heaven. She does live in the moment, so outside of the pain she is mostly happy or at least content. But as I said, she would hate the state of her life if she understood it. When she first moved to assisted living we were walking in the hall and saw that someone’s room included drawers that were labeled with what was in them and she said “Just kill me if I ever get to that point” and while she said it light-heartedly, she did mean it. She is a beautiful soul, so giving and caring and funny and smart, but also proud.
    I’m sorry that I’ve gone on and on. It’s just that I can relate to what you’ve shared here and wanted you to know that, to know you are not alone. And that you will be in my thoughts and prayers. Take care of yourself and Peace to your heart

    Reply
    • Sara, I am so glad that you went on and on. You have so much sitting on your shoulders. How could you not be depressed, even if you didn’t already have the genes? My heart breaks for you, your husband, your mother….I don’t understand why the Creator puts us on this earth to suffer. Judaism and Hinduism both have their explanations. I know that my father suffered horribly until the Day of Attonement, when I was finally able to speak to his soul and let him know that his sins were forgiven, and he went.

      For your husband, try Silymarin (a potentized extract of Milk Thistle, which is not strong enough on its own) at least 70% extract, two capsules two to three times a day, with food if he is able to eat. It won’t cure him (although it did cure my aunt), but it may alleviate some of his liver symptoms. Liver failure is a horrible way to die.

      For pain and lack of appetite, cannabis reigns supreme. There is no better medicine. If his lungs can’t handle smoke, there are vaporizers that can provide a comfortable inhalation treatment. I don’t know how his body would handle ingested cannabis, with his damaged liver.

      It is wise to let your youngest grow up a bit more before ending things, if that is possible. The treatments I have suggested might make life more comfortable in the meantime.

      I have had remarkable success with acupuncture in palliating liver disease related symptoms, but not all acupuncturists are familiar with the proper techniques.

      I know you didn’t comment wanting advice, and personally I hate unsolicited advice, but I couldn’t withhold information that I have used with much success in my own practice.

      I wish “Physician, heal thyself!” worked for me…fortunately I have been gifted with the ability to heal others, when I am feeling well enough to leave my cocoon.

      As for leaving the planet, my plan is there. It’s easy, painless, and it makes me feel better, knowing that if I need it, it’s there. My fear is that, like my father, I might miss the opportunity and be too helpless to carry it out.

      Please forgive me if I have crossed any boundaries here. My heart is with you.
      Love and blessings for relief,
      Laura

      Reply
      • Laura, you have not crossed any boundaries…rather I greatly appreciate all your input. Lots of people have advice, but it’s something special that comes from a physician that has seen things work. Thank you so much for sharing! He does use some cannabis, but it’s not something that is legal or readily available here. I can’t recall if I mentioned we are moving to WA after youngest graduates, but even though it’s not *for* ready access to cannabis, that will be huge benefit. It does give him some relief and calms anxiety/worries. In the meantime, I’ll share w/ him about the Silymarin and acupuncture. Any relief he could find with those would be so very welcome. Thank you again, Laura.

        Reply
  8. You write really good, and you should write a book!! 🙂

    Reply

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