Doctor Visit, the Spectral Leg and the Motivation of Ugly

Another doctor’s visit – this one for rehabilitation.  Here’s a funny to start. Tom’s dad had to go into physical rehab a few years ago in FL and when he rang to check on him,  they connected him with drug and alcohol rehab. So, mine is for physical evaluation.  We were waffling about going as it was close to rush hour in NYC bound traffic and over 30 miles from the house.

One of the challenges confronting dealing with this condition is that the onus is on the patient to discover and coordinate care and options.

Initially, my neurologist never suggested a brace.  I kept on falling.  However, I am used to falling and as a rule do what I have been told are very graceful ones.  Sometimes, I just crumple.  I was going through a stage where I was falling a lot and heavily on my knees. Our solution:  Harbor Freight for kneepads.  Uh, ugly and unwieldly so a friend referred me to an orthopedist she had seen for carpal tunnel.  My knees hurt and I thought I had done damage.  He wrote a scrip for the first brace.  It was filled by a little old man with hair plugs.  He told me I was lucky as I would soon have them on both my arms and legs.  When I went for the fitting, I swore he used a hair dryer to mold it to my leg.  I threw it in the trunk of the car and basically didn’t use it for about a year.  It was white plastic and covered my calf.  I used to crack up my physical therapist by saying it was a great shoe horn and helped me lift my leg into and out of the car.  I mainly used it as a visual cue and for some support walking and climbing stairs in Grand Central, Time Square and Penn Station.  I didn’t wear it in the office but had nice flats and kitten heels.  The spectral leg, as I prefer to call it, could only be worn with lace up shoes.  I am known for not wearing sneakers.  I was brought up to believe that they are acceptable for the gym, only.  I was never one of those women you would see walking in Manhattan in a suit and sneakers.

When things finally deteriorated and I started wearing the spectral leg  full time, the ugly tie shoes weren’t happening.  I spoke to the neurologist who gave me a scrip for a new one.  This one was to go completely under my foot and be less obtrusive than the original.  It would let me  wear different shoes, too.  My neurologist has always understood that looking good is important in helping me feel good.

The new spectral leg did not have shoe horn capabilities.  I can’t usually put it on myself.  As is my usual habit, I really didn’t use it for months.  Big problem when I did, sometimes, after just an hour my foot started to burn.  Other times, I could go for a few hours.  The pain was incredible.  Very problematic when I had to drive as my nerves would then cause the foot to jerk.  The GP said it was in my mind and I should talk to the neurologist.  The neurologist looked  at me as if I were crazy and said why would it be neurologic.  Finally, finally an ugly blood blister showed.  I’ll spare you the disgusting pictures.

New insurance, podiatrist.  He says it’s the spectral leg.

Back to neurologist.  I show her the pix.  She recommends a physical rehab doctor.  Ha, my insurance doesn’t cover him.  We go on a quest to find someone who is on my insurance and can treat my issue.  As this is going on, my walking and mobility are deteriorating.  I am hyperextending  my leg.  When I walk, I look sort of like Quasimodo and Igor.

We find a doctor, who is covered, who works with feet, is local and has available appointments.  He was honest enough to say he can’t help me.  However, his take is that the condition causes my nerves to flare and offers me drugs! And a referral to today’s doctor.

This is the first time, since the whole thing started that someone really evaluated the way I walk and move.  How come this took nearly 10 years.  No looking back but maybe, just maybe I could be in a different place now?

I explained how I don’t wear spectral leg in house.  He admired my seasonal cane.  We discussed how my neurologist and physical therapist suggested a walker.  He concurs but calls it a rollator,  He suggests it can be available in pink with a seat.  Tom quickly vetoes him on that before I can.

Next, yes a new spectral leg, an uglier one.  It will stabilize my knee and hips.  Some of me is still strong but my abductors are very weak.  He said watching me walk with my hyper extended knee hurt him.  If I don’t take care of it, I can become arthritic and the knee much worse.  I get that.  This new spectral leg is going to have major knee support and more of a back.  He says my little booties won’t work.  I’ll need sneakers or orthopedic shoes. NOT!! NOT!!  I will not do ugly.  He did suggest a shoe store and those shoes are UGLY  and a  few hundred dollars.

He does agree physical therapy and the gym are very important and will help.  Of course, insurance won’t  cover enough sessions. And I have to wear it from when I wake up.  I almot never wear it in the house. And almost never use a cane, either.

I am beyond upset.  I haven’t exercised enough.  Vicious cycle  – I can’t go to the gym so I get weaker.

This doctor, as does my neurologist, believes I can regain and retain muscle.  So Plan B – back to gym as soon as I can with existing walker, seasonal cane and spectral leg.  DO NOT THROW OUT existing ugly shoes.  DO become fanatic about clean eating/auto-immune diet.  This is the kick in the pants I need to commit.  Ugly inspires

Jeans are not just Jeans (and the Memory Motel)

Just about 20 years ago, I was living with a man, may he rest in peace, and it was not good.  We reached a point where he took everything out of me.

I have never real been a jeans person.  I was brought up in a household where ladies didn’t wear trousers, let alone jeans.  I always had the odd pair for mucking about.

I left him, started a new job and moved.  Not too much stress. Still, as is my way, we stayed in contact.  Prior to getting the new job, I had been pretty much subsisting for several years.  Jeans were not a necessary.  I was unhappy with him.  I gain weight when I am unhappy.  He gave me jeans that no longer fit him.  At my new job, there was dress down jeans Friday. The 20 year old used  to laugh and say “Boyfriend jeans.”  I was happier and walked tons every day.  The weight melted off even though I had a big cookie every day!

I had been in straitened circumstances for a year.  However, the following year, I bought a pair of jeans for me for nine dollars.  I also had tons of vacation time and little money.  One of my friends had a holiday voucher he hadn’t  used for Montauk.  I loved Montauk.  This was in the very early aughts before it became a hipster destination.  I paid my friend  a nominal sum and headed  East.

Now, in the early 80’s I had a share in a house in Amagansett with the 70’s high school cheerleading squad.  They were preppy before  it was a thing.  They used to line up their Weejuns at the edge of the beach.  I was so not preppy.  Definitely, not a Weejun person.  They slept in T shirts.  I slept in lingerie.  We would go dancing at Shagwong’s in Montauk.   It was OK.  I wanted to go to the Memory Motel.  Yes, the Memory Motel  Rolling Stones one.  Memory MotelThe cheerleaders opted out.

Fast forward to 2001ish and me in Montauk.  I made a beeline to the Memory.  Well, in the intervening years, things changed.  It was now a dive bar.  Fine by me.  Me and my 9 dollar jeans and flip flops walked in.  Happy hour.  Pool tables.  Beer.  My poison has always been Scotch on the rocks.  I breathed it all in.  The man I left did not like going out at all. And when we did, he accused me of coming on to everyone.  It felt so good to be out and about.  I walked, so no worries with drinking.  And as always, men bought me drinks.  It was a different world to when I had last been up and about.  Men were trying to sell me on their prospects.  Inevitably, I picked up someone, Billy.  We went out for steak.  And he asked me out for the next night.  Dilemma – what  to wear?  I had already packed myself into the jeans.  I had to do it again but with a changed top, one that could cover my packed in tummy.  And please know, I HATE  wearing the same thing twice.

So, we go out for drinks. And he said, ” I know that Susan likes to drink.” (Ya think) “but what else does she like to do?”  Great question.  I had fought so hard to retain what identity I had that there wasn’t a lot leftover.  I forgot that I read, garden, cook, write.  Lesson learned.

I bought other jeans and no, I never saw him again.  I always packed my tummy into those jeans when I could.  Sometimes, I couldn’t even zip them up.  They became my gardening jeans.

Fast forward again to this past weekend.  Life has changed and I own more jeans.  But, and there’s always a but, I have lost weight and they don’t fit.  And the rest were somewhere else.  I don’t wear jeans in the summer.  It’s the change in season so no clue as to where they are.  The weather snapped and it was cool Sunday morning.  I had to drive Tom to the blood bank.  Gardening jeans! Hadn’t worn them in ages as gardening is something that’s been taken from me. And they were baggy.  First time, ever.  But… the spectral leg can’t be hidden.  When this nonsense and that’s how I like to think of it, first started; I preferred to wear the spectral leg on the outside.  It was a clear indication of what was not right with me.  I wasn’t using the cane at that time.  I nearly sacrificed a favorite pair of black leather pants because the spectral leg could not be seen.  Now, because of the cane, I try to keep it hidden when I wear pants.  But  Sunday, I wasn’t even going to get out of the car. Tom was upset that it was visible.  I am upset that I finally fit into the jeans, I don’t want to wear them in public.

Instead of representing the freedom they once did , they now represent the limits I face.  It’s time to give them up and move on.

Captive

Lately, I feel like  Rapunzel, no gold hair, no tower.

It’s summer.  I have always loved  summer.  I have a tropical background and on hot steamy humid days, I thrived, bloomed and glowed.  I’d wake early on weekends and days off and drive down to the beach in the early morning.  I’d walk on the wet sand, breathe in the  air, feel the salt on my skin.  Sit a bit in the warm sun, reading and dozing.  I would be off by 11 or so.  Only mad dogs and Englishmen go out in the midday sun.  After 4, I’d drive down to the beach and  walk the boardwalk.  Friday nights were the best – all the international families strolling, smell of suntan lotion mingling with the sea and other perfume. Evenings in the backyard with the scent of flowers mixing with the citronella torches and bug spray.

I used to be teased that I always managed to be unemployed in summer.  I would spend so much time outside that my dark brown hair would bleach.

Fast forward to now.  I am not working again.  While I was still working this summer, I was considered very glamorous as I would leave the office with a broad Italian straw hat and Audrey Hepburn-like glasses.  Yes, I like dressing like that but I also had to because of the way the sun impacts me.

Now I am confined to the house.  I cannot get into or out of the backyard without help.  It has a few steps.  I found this out the hard way a few years ago.  I was gardening and found that I was like the little mermaid.  My legs were useless.  I have been able to do it since with assistance and a cane.  We have a gazebo/screen house in the back and I have loved sitting there reading, working, studying.  So far this year, I can’t manage the steps or the bumpy grass.  I look out the back window.  I feel like the Lady of Shalot without the mirror.

There’s a butterfly bush outside the kitchen window and I watch the butterflies flitter on and off.

We plant pots of flowers against the house.  This Saturday was the first time I was able to walk up to the pots and see them after planting them in June.  If I say so myself, they are spectacular.

The other day, there was no humidity and low 80’s.  T was outside and I sat reading on our front stoop under an awning.  Maybe 30 minutes.  I was able to stand but struggled to get up the two steps.  Then I have to step into the house.  Not happening.  I tell T I need an ice pack.  He screams at me that it is only 4 inches.  It could be Mt. Everest.  The ice works.

The plan is, if the weather holds, between T and his son, I may be able to get in the back.  I weigh less now than what the “kid” used to dead lift.  That’s a positive.

Just blue as I can’t really leave the house and do anything.   Taking the mail in from the end of the drive is sometimes insurmountable.

The sky is that rich August blue.  I am inside, looking out.

I am finding it hard to be my joyous self.   I am mourning my body.

Second Wheelchair Trip and Further Revelations

Yes, I had my first wheelchair  experience in April at Mt. Sinai

In June, I had another, also at Mt. Sinai.

I was going  in for my second round of Rituxin.  Mentally, I was in much better shape.  I knew what to expect and did not anticipate the treatment would result in death.  In fact, I was looking forward to it, as this time I had a plan.  I was working, it was summer and I was going to go to the gym and pump that stuff through my system.

I  had a later appointment but we went in earlier in the hopes I could be squeezed in early.  Despite working, I had been walking less so I was fatigued when we came off the     bus.  Plus, I was naturally nervous and that impacts my walking as well. We staggered into the hospital.  The security guard came bounding over, asking if I wanted a wheelchair.  No, they have a great ramp to the elevators.  Then we walked the labyrinth to the treatment center.  It looked different.  T went to check me in as I sank into a chair.  A male nurse came over offering a chair.  I explained I didn’t need one to stagger the last few feet to lay down for 6 hours.  I heard loud voices.  Apparently, the treatment center had moved to another location, a couple of blocks away.  T was demanding  a chair at the same time the nurse was telling me that’s what we needed.  In April, I was put in a chair for speeds sake and whisked along underground passages.  This time it was outside sidewalks in NYC.  I became this little old diminished lady in a wheelchair.  No selfies.  It was bumpy and I felt less than.  Less than the full person I believe I am.  People were looking over my head or avoiding looking at me.  Ok, maybe it was in my mind.  And yes, at that point I would really  have had to struggle.  The pavement was bumpy, tilted and crowded.

The elevator was horrible.  Again, it must have been me but people were too kind and considerate.  Everyone loomed over me and I felt tinier and tinier.

When we got to the right floor, T handled just about everything.  It was, as if I wasn’t competent.  I felt very, very small.

I was even wheeled to the waiting room. I hated feeling diminished.

The treatment moved forward and I was able to walk well to the bus and through the station.  I had problems and continue to do so on the station stairs.

This is not going to be one of those cheery and then I overcame or realized what a blessing.

What I realized was unless I get better that I cannot work in NYC.  This is huge as that’s where the money and the opportunity is.  I see things that I want to do and my pre-condition brain says “what fun. Let’s do that.”  And then I realize not happening!

When I was first diagnosed, for one brief moment, I thought I was going to be a poster child.  I would learn all there was to learn and just be.  First thing I received was a brochure with a woman on a scooter.  I turned off immediately.  I wanted no part and still want no part of that type of acceptance.  The spectral leg, the cane have all set me back and pained me deeply.  They are physical representations of my limitations.  I have to accept them, for now.  But now is becoming an infinity.

True confession:  I was in DollarTree last week.  It was early in the morning and I should have been at the peak of my energy level.  Plus, give me a cart and I usually rock.  This leads me to the walker that I ordered in January that stays behind the den door.  Anyhow, I was destroyed.  I could barely walk.  For a brief moment, I wanted a motorized cart.  I couldn’t believe me!

Everything is not all good all the time.

I am happy to say I am still fighting as hard as it is becoming.  Some days, it seems insurmountable.  I hate being confined to my body.  Guess, I need to work on that spirit thing.

Oh, and by the way, my doctor said she noticed a spiritual change in me.  She has me  confused with someone else.  There is nothing grateful or spiritual about this!

End of pity party, for now.

 

Firsts and Hopefully Lasts

I participate in research studies.   It’s a way of making some good come out of something less than positive.   And it’s also the way I can get MRI’s.  When I originally had insurance and this started. My first MRIs cost me thousands.  Then I had Affordable care and it was reasonable.  I am back to corporate insurance and a too high copay.

This study also focuses on the neurologic.  Usually, I do those, the blood and the physical first and the 90 minutes or so of MRIs last.  This time it was reversed.  We needed to be at MRIs first at  9a.m.

I am spoiled.  Since I have started working on LI, waking at 4:15 a.m. no longer appeals to me.

I was better able to get to the bus uptown this time.  However, I realize that I am no longer able to work in NYC.  This is extremely disheartening.   We took a slightly later train and ran a little late.  It’s two blocks from the main office to the MRI.  Unless you have issues walking, you don’t realize that the sidewalk is slightly slanted and is not completely flush.  Also, my legs don’t work when I am upset.

I said to Tom “I think I am going to need a wheelchair to make it to the MRI.”  Now, they always offer and I always refuse.  Once,  years ago, I told him I needed a chair and  he told me if he had to carry me, it wasn’t happening.   He said,  I was going to tell you that we need one but thought you would be mad.” Oh well.  When we arrived, the research assistant said, “let’s get you a wheelchair.”  I nearly burst into tears. Ironically, there’s an underground passage.  I could have walked it but we definitely would have been late.  And it’s longer.

Now here’s the funny thing, I fall asleep during MRIs.  Yup.  No problems.  See, no one can get me there.  No one can call me or email me.  They tuck me in with a nice blanket.  Could a girl want more?  I was signed up for a special one. This time, they made me wear two gowns.  LUCKY!  So, now is the fun part.  I don’t have spectral leg, cane or glasses.  They have to carry me onto the machine. I get my nap.  They pull me out.  I am used to this drill.  They usually reposition  me and roll me back in.  Not this time.  We do the carry thing into another room and machine.  Ah, that explains the double gown!  I settle in to a new machine.  They pull me out again.  The machine is broken!

Back to the wheelchair.  And onto the neurological tests.  Well, first I do the physical .  My now usual stumble. The thing with the neurological tests is they are usually the same.  They read a list of objects and I tell them the list back.  I am really good at this. I remember from year to year. LOL.  This year they changed the list.  Hey, I aced it, no mistakes.  There are other tests which I also remember.  One I particularly dislike  is 6 shapes that you need to sort into 2 groups of 3.  I miss some usually.  This time I did more combinations than ever.  My mind is not declining.  Researcher said she won’t tell me what I missed ’cause I’ll remember next year.

Being in a wheelchair was  weird. I felt diminished. I was lower than everyone.  People moved out of our way. Moving without doing anything was unsettling.  On one hand, it was stress-free; on the other it was awful to think that I had come to that.

This cannot continue.  I cannot give up.  I don’t know what to do.

Doctor’s Visit

I bit my nails until a few years ago.  I mean chewed them.   I used to commute with my mother and she used to smack me when I bit them.  This was odd because not only was I an adult but we were different colors.  A few years ago I just made up my mind and let them grow. It was the look my mother had always wanted to see – long thin painted fingers.  She had passed away by the time I accomplished this.  It has become part of who I am.  At the salon, they told  me my nails were very strong .  Apparently, this is the case for former biters.

This past summer in August , my youngest stepson was married and I had them done.  They were perfect, no cracks.  They kept on growing.  I had talons.  They were uncomfortable.  We couldn’t cut them at all they were that hard. So, back to the salon.

What does this have to do with my condition? Well, almost three months ago I started megadoses of  biotin.  Biotin is used to strengthen your nails and hair. Also. maybe myelin repair.   Guess what?  My nails are snapping like crazy.  They are back to short.  My thought,  if this is happening to my nails, what about my bones?   My hands don’t look like me, along with others parts of me that are changing.  This was a little vanity for me.  The doctor said it wasn’t the biotin but the steroids still in my body from the Rituxin.  Guess that’s the little weight I’ve gained.

Recently , because of changes in insurance, it became necessary to cut  Ampyra to one time a day.  Frankly, we thought it wasn’t really working.  Well, quickly found out one a day impacted me badly.   Luckily, insurance sorted out with a day to go.  I  was so scared.

My right leg is the one with  the problem but lately my left knee has been killing me.  Did I say that I did go to an orthopedist last year for my foot – more on that below and wore beaded capris during the scans?  He was fascinated as he didn’t know what those little things were.  He couldn’t help me with the foot as he only does knees and hips.  He said the top of my knee was mildly arthritic.  Well now, somedays it is excruciating. It also  collapses unexpectedly.   My doctor says it’s not the condition.  The collapsing thing I thought was.

I did do my usual timed walk. It was AWFUL.  I really hadn’t changed my pace prior to this.  This time I walked like a toddler!  I told the doctor that and she said “But you are an adult.”  Exactly.  No comfort.  Apparently, part of the problem  is that I am hyperextending my left leg.  Her verdict I need an orthopedist.  Me – knee brace via Amazonprime.  In February 2008 I walked into that office in high heels.

More aches   and pains.  Recently and inexplicably, I have had sudden cry out loud stabbing pain.  Her verdict? Some nerve thing, you should see an orthopedist.

Next issue.  Since last winter I have experienced a burning sensation in my right foot, particularly when I wear tied shoes.  The GP suggested it was a condition thing.  I was also told it’s in my mind.  I only know that it feels like my foot is on fire and if it happens in the car I can barely drive.  Another suggestion was the spectral leg wasn’t fitting. To me, it has felt like a deep blister.  Well, I played around with corn removers and wart removers.  It’s not in my mind.  I took a picture which I will not share which is truly disgusting but shows that I have what looks like a deep bruise and bleeding.  Verdict:  Orthopedist!

One thing that I realized during this trip to the doctor is that at this point, I can no longer work in NYC.  This is devastating to me. I make more money in the city.  It’s more open.  There’s a vibrancy there.  Okay, this time I could drag myself up onto the bus without help but I couldn’t really walk by myself.  If my husband hadn’t been with me, I would have been pushed or fallen.  My world narrows.

On the upside or at least I am looking on it as an upside, the newspaper hawker called out to me.  “Good to see you again baby.”  This is the woman who picked me up off the sidewalk in front of the station about four years ago.  People recognize and support me in my struggle.

Also, on the positive side my doctor has offered to come into work early for my next exam so I lose less time at work,  See above – support in my struggle.

Old Girlfriends, Postal and Rituxan

What a difference a day makes!  An update on the postal situation from yesterday.  I placed calls to his landlord, psychologist and the VA.  The VA was helpful.  No calls from the others by 4 p.m. so I call K back.  He’s very cryptic and said the situation has been settled for $400.  He doesn’t sound right.  “Are you on drugs?”  “Of course.”  I finally am able to get his cousin’s name and phone number out of him.  Bombshell.  K has checked himself out of facility and told them and cousin that he is coming to live with me.  This is not possible on so many levels.  He appears to grasp this and states his intent is to check into one of the cheap, tawdry motels on Montauk or Sunrise.  In fact, there is one within walking distance of my house that I call the Pedophile Motel as a year or so before we moved in there were legal issues as it appeared the town and county were housing all the pedophiles there. Alright, I tell him we’ll deal and get him situated.  I tell him that I have called the landlord and will call him again.  My husband is livid over the situation and thinks the landlord has K’s belongings.  He wants to drive over, get everything before it’s tossed then drop the dime on the illegal rental.  K says don’t call him again.  He’s spoken to him today and landlord was very cold. He also tells me to say nothing of his plan to his cousin. Now whilst I am having this conversation with K on my landline, I hear other calls coming in and my cell is ringing too.  I see one call on the cell is my neurologist so husband picks that one up.

I hang up and see the landlord has called me.  I ring back.  Wow.  K has played us all.  I worked for years on a phone so I am really good with voices and lies.  Landlord is a straight up guy.  After I saw K just before Labor Day weekend, he rapidly deteriorated and was falling several times a day.  It culminated, ironically, enough on September 11, when landlord S’s children heard yelling. K had fallen facedown for 10 hours.  K was refusing help.  S told him paramedics or police.  He was hospitalized for 5 or 6 days.  During his episode, he had crystallization of his blood.  K was released to an assisted living/rehab facility.  Ironically, my husband and I drive by there all the time.  He was there until the end of September when the insurance ran out.  The cousin P was called.  The facility told him that K could walk 160 feet with a walker.  However, he had degenerated so much during this period that he was not allowed to use the bathroom on his own.  S had looked into the apartment with a view to making it handicapped accessible.  K had lived there almost 11 years.  Apparently, he has not had control of his urine or bowel for sometime.  The apartment/room needed fumigation and a new floor.  S also determined that he could not assume the responsibility nor have his children exposed to the consequences of falling,  S drove him to the cousin P in Maryland.  He had to help him in the bathroom on the way down.

The first night at the cousin’s he fell repeatedly.  The cousin called an ambulance.

I have a call into the cousin.  The cousin takes care of his nephew who as far as I can ascertain on the phone has at minimum a significant speech impediment.  I call twice leaving messages.

In the meantime, the psychologist has left a message for me on my cell.  All three of these men know of me as an old girlfriend, not my name,  just an old girlfriend.  The psychologist, B, and I have quite the conversation.  He has treated K for years.  In fact, he has retired and is very old.  He sounds ancient on the phone.

B never knew that I knew K at the time of the original postal  incident.  I had to go into therapy because of it.  I couldn’t handle it and left K for someone else.  K stalked me and threatened me when he found out.  I know, atrocious taste in men.  At that time in the late 80’s, there wasn’t the awareness or sensitivity to domestic violence there is now.  The police told me there was nothing they could do until he actually hurt me.  Their suggestion was for me to move.  In Suffolk county at that time there was a rash of domestic killings in a few months. I know because my girl friends, their mothers and my parents all cut out the clippings for me.  And yes, I went back into therapy once his meds were stabilized and I started interacting and seeing him again.

I give B the cousin, the landlord and the facility numbers as I explain he will have more weight than I do.

 

P calls back.  “Thank G-d you called.  I have been trying to get K to give me your name, number and address!”  He told K that he wanted to talk to me before he dropped him here  today. K has even told him I have been married twice.  P questions whether my husband will accept him.  K refuses to give up my address but instead tells P how to get my house from his room.

We have a most illuminating conversation.  P also knew of me as the old girlfriend, no name.  But he knew of my diagnosis, my two marriages and that I went to Hopkins.  Unless people tick me off, I don’t usually tell them I went to Hopkins but say I went to college in Baltimore.  I did the same yesterday and all three men said “Yeah, I knew you went to Hopkins.”  P found out from me the truth of the postal incident.  No, he didn’t hit 3 -4 guys.  They did try to provoke him to do so but instead his blood pressure rose so high he nearly stroked out and was taken out by ambulance.  I thought K’s father and mother were both evil and I do not use that term lightly.  K is older than me and his teachers reported the father for child abuse.  In that era you could just about kill your kids.  There were 6 brothers.  At least two are dead and one has been institutionalized for years.  Despite this K kept in touch with his father who ended up living in an SRO.  When he died, his mother refused to have anything to do with the burial.  Only one brother came.  That’s one of my gripes against the mother.  She was a lay minister in the Catholic church and would not separate or divorce the father.  She sacrificed her sons.  I do not believe in that kind of G-d.  P told me as soon as they were old enough each son beat the father up.  K broke his jaw.  He also shared my opinion of the mother and told me more stories about her.

All three men and I shared stories of K’s increasing paranoia and remoteness. I bought a computer for K once when I had a huge bonus.  Good fortune is meant to be shared.  A few years later he returned it to me saying it was broken,  Maybe,  but apparently was truly paranoid about it.  He wouldn’t use one at the library either.  He only recently had a cellphone and I believe it was through a program.  Caller ID displayed LI Spinal Foundation.

P can’t fight him any more and told K he will take him anywhere he wants to go.  He will leave him at a motel, wait an hour and call 911.  I beg him to let me know and I will call if necessary.

Oh, and the call my husband answered on my cell?  It’s my doctor’s office asking me to come in today.  I have been approved for the Rituxan.  I don’t even register this or remember it till after 8 p.m.  This is huge.  This drug could literally change my life. I can’t even process this.  I keep on forgetting!

 

My husband wakes in a rage this morning.  How could anyone dump K?  I repeat our 911 plan.  Smack forehead.  Of course, the police will come before ambulance.  We anticipate his resistance and see jail in his future or else due to late father’s influence (top police lieutenant) K being able to stay in motel to die.  He was able to get out of a traffic incident this summer dropping names.

I call the VA again this morning.  They suggest the cousin drive him directly there.  He is technically homeless and they have a shelter on the property.

The Catholic hospital nearest me said if there were mental health issues, they couldn’t take him.

I call the psychologist.  He has had no luck with the cousin.  He said P was adamant K was going to New York.  He and his wife also had the same serious reservations about the 911 plan.  B then revealed that K was so paranoid that for five years he would only meet B at diners or restaurants away from where they both lived.  His opinion was that K cannot survive in a group situation. Also, none of us must have any guilt   as we all have done much more than could be expected.  We are all good people.

At ten of two this afternoon, the phone rang.  It was P.  He went to get K at 8 and asked where are we going?  K said I’ll let you know in 4 hours.  P refused.  They went to 7 -11 for an hour and a half.  For now sanity has prevailed and K has agreed to stay and sign on a contract to live there. He says he doesn’t want to die in Maryland.  The cousin says who wants to die?

We all agree that this is very sad.  It is.  I agree we all tried to do the best we could. But I am looking at it another way.  We have all known K for decades.  We knew of each other – the old girlfriend, the cousin, the shrink, the landlord.  He reduced us  all to the role he wanted us to have in his life. We all do that.  K is just more extreme about it due to his emotional issues.

Ok, not guilt but I am so questioning myself.  How did I let myself so eagerly be a part of this.  K and I never officially lived together.  I have been married twice, lived with someone and had numerous affairs.  Through all this we have been constants in each other’s lives.  We have been “in sickness and in health, for richer or poorer.”  I need to process what it means.  I sense that somewhere along the way, we all failed him.  And I, I failed myself.  Why can’t I let go?  Why have I maintained a relationship with a man capable of hurting me physically? All relationships involve hurt.

If this crisis had not occurred, we all would still be in our roles.  How do we as a society perpetuate these situations?  We are all so close and yet so distant.