Life After Major Surgery…and it Still Continues….

I haven’t written here in over 6 months.  6 months.  It doesn’t sound like a long time; sometimes it feels like a long time.  Sometimes it feels like where did the time go?

In April this year I had back surgery.  Huge back surgery. 10 hours of back surgery.  Somehow they managed to overdose me after the surgery; but more on that later.  Back to now.

My doctor told me it would take a full year to recover and know if what he did will help.  Well, I know somethings are better, and some are worse.  My recovery speed is a bit like watching the grass grow.  Or the paint dry.

When I get up in the morning now, by the time I get out of bed, shower and get dressed, I’m ready to sit down and say, oh well, another day shot.  But I do what I need to do.  It just gets to a point where if I don’t sit down right this minute than I shall surely cave in upon myself. Because it feels like I can’t stand up straight after a certain amount of activity.  I don’t like that.  I’m a doer.  I’m a person who “self-assembles” the stuff I buy that says “some assembly required…” which usually mean, ALL assembly required.  But I do it.  And I pay for it now, in pain.  And I tell myself, see what happens when you overdo?  Yeah, yeah… I see.

So I went to a psychologist who does hypnosis for pain control.  She  made me a CD.  I started to listen to it in bed and it made me very anxious.  I have no idea why or what it was about that recording, but I didn’t like it.  So I haven’t tried it again.

Then the therapist got very sick and was out for several weeks.  She’s going to retire soon, so I found another psychologist who specializes in “health psychology.”  He doesn’t do hypnosis, and he does Cognitive Behavioral Therapy.

As a retired Marriage and Family Therapist who did hypnosis on others for about 15 years, I know a lot about it. And I’m not a fan of Cognitive Behavioral Therapy (CBT we call it).  But what have I got to lose?  I have no copay for now, so why not give it a try.

So anyway, I traveled to Austin, TX a week ago, to see my daughter and son in law and grandson (who is so adorable I could just eat him up….wonder where that saying came from?  Well, another blog, I guess…).  I spent a week there, then went to San Francisco to see my mom, where I slept on a pull out sofa bed, which was probably not the greatest thing for my back.  And all the travel was a bit too much.  I’m getting very tired of the flying back and forth, but it’s the only way I’m going to see my family I guess.  My daughter did come up here to visit in July with her baby.  That was nice.

I came home totally exhausted (from my recent trip).  I managed to get to physical therapy and the supermarket (as usual, there was no food in my house…) the day after I got back.  But I had to cancel an appointment I had this morning at 10:00 because I knew I’d never make it out of bed in time to get there.

I’m now pretty much a disabled person.  I can’t do a lot of time on my feet; I can’t walk much more than ½ a mile at a time.  Any kind of job I might be suited for, I don’t think I could do unless it meant sitting all day and not having to get up and down a lot.  I could go back to doing hypnosis; but I can’t do therapy because I’m not licensed in the state I now live in.  And getting a new license?  Oy vey.  Such a production!  They want information going back to my master’s degree, and I don’t have all of that anymore.  Or if I do, it’s in a box somewhere that I can’t find.  I’ve been through every box, file – everything where it may be, but I must have decided, “Oh, I won’t need this again…”

Isn’t that always the way?  You find old papers, clothes, whatever and as soon as you decide you don’t need this anymore, you need it.  I’ve looked for things over the years and I was sure where I had left them, couldn’t find them, only to come across them three months later when I didn’t need them, but thought, “I needed this; couldn’t find it; better put it in the file…”  Then I clean out my flies because, well, there’s so much there that I don’t need… for now anyway.

And there I’ve gone off on another tangent.

So I have this chronic pain, mostly from my back, but my joints hurts all over and then my brain will kick in and remind me, oh yeah – I have fibromyalgia…. forgot about that.  And some kind of undiagnosed inflammatory arthritis…All of which contributes to my fatigue, my pain, my cognitive skills – or maybe my lack of cognitive skills- and my sleep problems.  Drugs help.  Problem is:  I don’t want to take the drugs.

But here’s the thing about surgery for me, at least:  I’m alone.  I was terrified of having major surgery without a “loved one” to be here for me.  My husband died in 2010 for those of you who maybe haven’t read previous posts of mine, or didn’t know; my daughter had a new baby at that time and never expected she could come up here; my other daughter simply wouldn’t come up because he husband won’t “let” her and she won’t stand up to him (and another blog there…).

So I woke up after the surgery to hear nurses talking around me about my vitals dropping.  My temperature dropping, my blood pressure dropping, my respirations were 5 times a minute (is that even possible? I wondered).  I was laying (or is it, ‘lying?’) there, unable to speak, and thinking, can I get excited about this?  No, not really.  I could not get upset or frightened or anything. All I could think was “leave me alone; let me go. This is where Don is supposed to come, give me his hand, and say, ‘come on; it’s time to go…’ “, and my spirit or soul or whatever you want to call it would leave my body and that would be my out.  I’m still looking for a way out of this life, and into the next one – if there is, indeed, a next one.  Because I don’t know if there is or isn’t.  How do any of us know?  Even those of us who’ve had near death experiences and said they saw the light; even that little boy in that book, “Heaven is for real.”  Or was that the one by the neurologist who was so near death that he was sure he saw heaven but came back to write another book about it… Oh, Proof of Heaven.  That was the name.  I’ve read those books, but so what?

There are a lot of people where I live who go to church.  A lot less who go to temple, since we have a lot of churches but only two synagogues here.  Oh well.   A lot of people believe in life after death, and I want to because i want to believe I’ll be with Don again – someday.  I can’t kill myself, because if there is a god, and life after death, he may get mad at me and not let me go to the place where Don is.  IF there is such a place.  I have this yearning need to know, and I know I can’t know, not really, not while I’m alive.

So no out for now, I guess.  People tell me I’m still here for a reason; that I have a purpose.  I sure wish I knew what that purpose is.  My daughter and her little family live so far; I can’t be much help from here.  My other daughter, like I’ve said, won’t contact me or visit me or ask me for help (but she will ask for money….).  My mom has Alzheimer’s, she declining, but she’s in San Francisco which is about 10 – 11 hours by car (I think), so I see her ever 3 -4 months and just bite the bullet regarding airfare and other misc items, like renting a car.  But she’s my mom, and you only get one of those.

So why did I write all this?  Am I trying to send a message, or tell you something about living with pain?  I have no idea, unless maybe I really wrote it for myself – to get it out.

I will say this:  Some people have what we call “invisible diseases.”  We park in handicapped spots (with a placard or special license plate, of course) but when we get out of the car, we look normal and you wonder why we’re using a handicapped parking spot if nothing is really wrong with us. Well, I can’t walk very far.  And if I’m carrying shopping bags or something else, I really can’t walk that far.

I bought a little red wagon so I don’t have to carry my groceries from the car to the house.  It helps, but I still have to carry them inside to the kitchen and it’s not always so easy.  Then I have to put them away.  And usually by that point, I’m too wiped out to do much else except sit down and wait until I feel like I can make dinner (making dinner means reheating a frozen meal…not always the best way to eat, but at least I can eat!).

I suppose I should feel fortunate.  Fortunate I have a place to live; that I was able to afford my health insurance (barely); that I have health insurance; that I have friends who care about me (or at least are good at pretending they do); fortunate that I had a husband who believed in saving and was a genius at investing; not much life insurance, but enough to help me get by for a few years; the rest will come from my meager State Teacher’s Retirement System, and at some point, I’ll start collecting my husband’s Social Security – what he would have collected if he had lived.  But I will be penalized for my own pension income, which is not a lot. I’m luckier than a lot of other widows – if a widow can be at all lucky.  So at least I have my investments, and hopefully, I won’t out live them….

I’d give up everything I have, give it all away, if I could only have my Don back for even just a day – healthy and free of illness and disease and not in pain or suffering at all.  But that isn’t going to happen.  I used to joke with him, when he said “Well, at least I have life insurance for you if I die…” and I’d respond that “money won’t keep me warm at night…I’d rather have you any day than you life insurance.  Don’ die.”  But, well, he did.  My worst nightmare come true.

And now I’ve gone from talking about chronic pain to being a widow – something I seem to keep coming back to.  So I guess I need to write more about being alone.  Get it off my chest so to speak.  So I’ll see if I can manage to do that.  In the meantime, I’m still here, I’m still breathing and still wondering why I’m here.  I need a purpose.  I need a reason to go on beside “You have a purpose…”  yeah, right.  So what the hell is it?


Life Goes On… Just like I seem to do…

What does that mean, exactly?  The title of this post, I mean.  (Sorry, I’m not always as clear as I’d like to be…)  We’re born, we live, we die.  Does that sound too fatalistic?  But isn’t it true?  Hopefully, somewhere along the way, we leave a footprint – the good kind of footprint. The kind where we make a difference in someone’s life, or maybe in many people’s lives.  We’re remembered after were “gone.” Where we go to, I don’t know.  I do know what different belief systems say:  “Oh, he’s going to hell for sure…”; “She’s with the angels now…”; “G-d wanted him home…”; “there’s nothing; just death and then nothing…”  It all depends on who you talk to, your own personal belief system… and maybe things that happen that change that belief system.

When my husband was dying of cancer, I sat by his bed and kept telling him it was okay to go.  I didn’t know where he was going, just that he was going; he was leaving this earth, this life and me.  Most of all, me.  I wanted to scream at him, “Don’t go! Don’t you dare leave me!  I still need you!”  but how can you blame someone for dying?  Grief does strange things to us; and yes, there is anger in with the pain; the hole in my heart that three years later is still there; that will always be there.

But I digress.  We are born, we live, we die.  When Don died, my entire belief system about life after death, about the possibility of a G-d, a higher power, a supreme being – call it what you will – changed.  As I sat with him his last morning on earth, giving him morphine to control his pain, he kept reaching upwards, and looking at the top of the wall in front of him.  I knew he was seeing something or someone.  I also felt in my very core that he was not hallucinating.  What I saw Don experience was too similar to too many hundreds of stories I’d read and heard over the years of other people dying.  And even if he wasn’t able to speak at that point, he was able to reach out to me, to hold my hand, to look deep into my eyes as if he were trying to memorize my face.  And then he suddenly said, very clearly, “well I guess so” when I said, again, it’s okay to go.  I was a psychotherapist, and in my training years, worked for hospice, leading bereavement groups.  I learned a lot from my clients, my grief-stricken clients who had just lost the loves of their lives.

I learned that in grief, community is important.  Telling your story – no matter how many times – is important.  Getting that understanding from others who don’t try to “fix it”; who don’t say they understand when there is no way in hell they can possibly understand because they have not been there is important.  And hope is important; hope that you will get though this – because there is no getting over it or around it or under it – you just have to get through it, and the reality is you have to do it alone (with a little help from your friends…to quote one of my favorite songs) and the other reality is that you WILL get through it.  I will get through it.  There may be times that yes, I want to be dead because the pain, at times, is so deep and so paralyzing all I can do is ask “why am I still here?” while I sit on the floor – yes, three years later, I still sit on the floor crying and yelling at Don for leaving me, and then acknowledging that I am grateful he is not suffering; that he no longer knows agonizing pain and illness.  But here I am, lonely as hell. 

So watching Don die, having our two daughters there, my daughter’s fiancee, her best friend  (who simply got up and called the mortuary without even being asked – just being thoughtful and doing what she could for us), my belief system was challenged, and I knew, I just felt it, that there is something after death. Don saw something – I’ll never know what it was, but whatever it was, I hope I see it, too, when I lay dying.

I mentioned hope.  What does one hope for when the love of their love is gone? When it feels like their life is certainly, must be, has to be, over? When the future one expected and planned for and waited for is gone?  I can only speak for myself, but my hope – well, I have several hopes:  I hope that my “footprint” is one that made an impact on people’s lives:  my middle school students when I taught school (even if it’s only one or two kids out of the hundreds who passed through my classroom); my graduate students when I taught in a graduate psychology program (even if only one or two are better therapists because of something I taught them); that the clients I saw over the course of 12 years are living better, happier lives.  And I hope for myself, that I find a new purpose; that I find a reason why I keep waking up each morning – alone.  But my biggest hope?  That someday, when my soul leaves my body, I am reunited with the one true love of my life – my Don.

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And as I learned from a wonderful organization called Soaring Spirits and the amazing woman who started it:  “Hope Matters; Love Never Dies” (Soaring Spirits –