Vice Presidential Aspirations and Disability

What did you want to be when you grew up? I was about ten and I sent away for career brochures.  I think it was from an insurance company.  I thought lawyer looked interesting and different.  Girls just didn’t become lawyers then.  I also really, really wanted to become an actress.  Also, write books.  My father was a writer so it’s in my DNA.  And I probably couldn’t do it because my father was a writer.  He did tell me before he died that I should write and not let him stop me. It was a gift from him to me.

As I grew, practicality intruded.  I have a facility for language.  I decided to be a multi-lingual secretary.  My mother was a secretary.  She was excellent, well-paid and powerful at times.  I was told in high school that I wasn’t fluent enough;  native speakers would receive precedence; I was that smart that I should have my own security. Reality?  After Hopkins, I applied for a secretarial spot that wanted someone who spoke English, French, Spanish and German, and who studied Latin America and Africa in that order. All checks.  I didn’t get the job because my typing wasn’t fast enough.

Moving on, again with the practicality. OK, if I couldn’t be a multi-lingual secretary, I would major in International Relations at Johns Hopkins and become Henry Kissinger.  Well, that didn’t work.  Economics and I were a nonstarter.  I did attend a job placement interview at Hopkins.  When asked for my aspirations, I said I wanted to wear Vogue clothes.  The counselor was mildly taken aback but assured me with a Hopkins degree I could do anything.  NOT!!  See above for starters.

Attempting to be logical, I determined if I wanted Vogue clothes, I needed to work in clothing.  I had thought  about this in high school but fashion was a trade and I was supposed to be too smart.  And I didn’t draw.  Uh, all work in fashion is not design.  Hopkins?  So, not working.  I was on my second job as assistant office manager in a major construction company when the receptionist turned me on to FIT Continuing Ed.  I was off and running.  Sundays 9- 5 and two nights a week till 9:30 or 10:30.  And I received an A in my art class.  My new ambition?  I was gonna be Calvin Klein.  In later years, I was questioned as to why I always wanted to be men.  Duh, that’s where the power was and is.

I started out as an assistant at Bobbie Brooks.  Why I got the job?  I was the only candidate with personal stationery; I am a Libra and they thought because of Hopkins, I knew psychology.  I decided I wanted to be a merchandiser in my own right.  Five companies later, I did it!  So, then what?  I wanted that VP title but I was just a “girl”.  This “girl” negotiated a licensing agreement with a major French fashion company.  Girls didn’t get to be vice presidents in that company.  The fashion press referred to me as vice president merchandising but not the company. Yes, they  merged with another company and gave my job to a male VP.  I definitely was able to buy and wear Vogue clothes so I did fulfill that ambition.

Back to the drawing board and I started working in financial services from the bottom up.  I had a facility for it.  Who knew that a fashionista could be successful in banking?!  Complications.  I was up for an AVP but was let go.  I came back as a consultant for another 11 years.  Same story – perceived as VP but no title.  I wanted to end my career as a VP.

Unemployed again, over 50, mobility issues, not happening.  In the last three years I have applied and applied.  I  began to realize that I could no longer commute into Manhattan.  If you want to be a VP and a woman on Long Island, you have no life.  I tried anyway.  I was told three years ago to apply for disability.  Me?  I am not disabled.  I just don’t walk well.  I am no longer the woman who wore three inch heels ,carried pocketbook, laptop and projector but disabled?

I finally succumbed last November and applied.  It’s like when I obtained the handicap sticker 5 years ago.  It was a “just in case”.  I thought it was temporary and I would be me in 5 years.  I am worse.  Cane, walker. Everyone said if anyone deserved it, it was me.  I have fought so hard.  I only did it because of economics.  This is a title I do not want.

Last Thursday, I received a letter saying I was medically qualified but the non-medical was still being evaluated.  This makes no sense.  Friday, there is a check in the mail.  I am officially disabled.  It is bittersweet.  The wolf at the door is being held back.  This is not a title I ever aspired to or even wildly imagined. WTF happened!! This was not what I wanted to be when I grew up.  I am coming to terms with the fact that my career life is over.  I am NEVER going to get that title, again, something outside the sphere of possibilities.

It’s reinvention time, Tresswann rising.    What do I want next?  What am I going to do for the rest of my life?  Well, the great Carib-American novel is possible but probably not publishable. I need to walk.  This gives me the opportunity to focus on getting back to walking.  I feel a little lost but I shall regroup.  I did originally want to write so maybe…

What did you want to be when you grew up and what happened along the way?

 

Failure and Rising Again

I did not make it to the Black/White Masquerade party.

I did attend my tea.  I was relatively sedentary.  My friend did help me walk around the room.  With her help, I successfully bid on a Luau basket.  I guess there’s a party in my future.

The problem started because the car was parked much further than usual.  It took me about 15 minutes, easily, well not so easily, to get to the car.  I arrived home later than planned.  I was totally knackered but put my feet up.  I began to modify my plans – touch up makeup instead of redo; leave hair as is and not swap to hair ornament, leave Victorian knee highs on.  I did contemplate staying with the floral sneakers but really wouldn’t work with black chiffon skirt.

Next, I had a problem pulling the skirt on.  As much as I dislike it, it has an elastic waist.  Comic but not, seeing Tom trying to pull it on for me. Then I tried to stand up and gracefully collapsed into the chair.  Then I did it again.  It was scary.  I realized that the mask was still upstairs; the cards weren’t signed.  It was overwhelming.  I just couldn’t do it.  I hurt.  I was weak.  I would not be able to get there until much later.

I have always believed in a cost benefit analysis.  If I had to go to work in seriously bad weather or snow, I always did this.  Sometimes, I went; sometimes I didn’t.  Well, CBA on Saturday, said it wouldn’t work.  Being so collapsed, I would not be safe driving.   I would barely have been able to walk.  I was devastated but cancelled at the last minute. This is so not me.  It was always a joke when I was much younger that I was always up for a party.  For awhile, my nickname was Flash because I was always ready in a flash.  Nor did I let sickness deter me.  I recall a dinner dance cruise around Manhattan in the 80’s with a 102 fever body suit with wrap skirt, shawl and glitter.  Everything glittered for me that evening.

I was bitterly disappointed this past Saturday.  Firstly, if I had been able to go I would have needed the walker.  Secondly, that I wasn’t strong enough at all to go. So, as per my usual Joe Palooka doll self (you know the children’s punching bag toys that you hit and they bounce right back), I decided that iit’s time yet again to amp things up.  I have started the MS workout program.  If I stick to it, I should get results.  I am going to push more on a daily basis for more steps.  I will get outdoors this summer.  I refuse to bow to defeat.  My plan and goal is for this to be the last event I lose to this condition

Ocrevus, the Future and the Past

I have had a helluva time getting my first infusion of Ocrevus instead of Rituxin.  No, my doctor is not the problem.  Indeed, she has been a champion.  What happened?  Well, I was initially scheduled to have the 2nd bit on December 21 in the afternoon.  This means that I would have been in Penn Station, late on the Thursday night before Christmas.  Everyone agreed this was a bad idea.  I began to lose strength.  I scheduled for January but it was just above zero degrees, not healthy or positive.  I really began to weaken.  We decided to try and find a local place to do the infusion only. This became problematic.  I had to sort insurance out.  The place we eventually chose wanted me to become their patient.  I didn’t want to change my doctor.  They started asking for all sorts of things.  Every time we gave it to them and they wanted more.  Despite having authorization, they told me I had no prescription.  Then, they said Ocrevus had no idea who I was.  Back to my original doctor and back to NYC.  However, a combination of factors led to my being unable to walk for any distance with or without walker, no escalators.  We determined we would need car service to get into and out of NYC.  Why didn’t I just do this one way December 21?  Hindsight is a great quarterback.

Now, every time I have been to the infusion center, I have been offered a wheelchair.    Our plan this time was to take them up on the offer.  Well, the best laid plans….  None were available.  And we went up the elevator bank on the wrong side of the building.  We discovered this when Reception had no record of my appointment.  More gimping along.  They did intercept me in the hall though and put me in my “room” straightaway.  I was assigned my favorite nurse, Nicholas.  He understands my phobia, terrors, and how my body works or doesn’t.  I have really bad veins.  Luckily, I saw the shooting heroin film in fifth grade and decided needles were not for me.  I used to do alright with shots and blood until my college roomie said she always became faint.  Not me, I was the big sister.  Until my roommate opened her mouth.    I cannot look or deal.  My husband gives platelets on a regular basis.  This is a several hour process. I had to use the restroom once and it was  comic to see me try to walk and not look.  After one of his operations, I nearly passed out when they tried to show me how to change his blood bag.  Nicholas “gets” me.  So, bad veins, infusion and Nicholas.  I used to have a doctor who could find my one good vein.  He died.  For this treatment of several hours, they insert it in my hand.  Nicholas knows where my vein is.  Just typing this is making me lightheaded. Well, Nicholas missed.  It wasn’t really a miss but a malfunction.  He announced he had to go in again.  At this point, I felt  myself going out – cold sweat, hot, red faced, nauseous. The guys tell me no.  Seriously?  Deep breathing and ginger ale.  He gets it in.  Mind you, I keep my head averted the entire time, not just the sticking but the infusion.  Nicholas is good so even when my blood pressure goes to 95 which is not bad for me, we keep on going.  I did get the slight metallic taste with the steroids.  It finished faster than the Rituxin.  I was kept for an extra hour to make sure I was alright.

 

The car service both ways drove past the house I grew up in.  I usually try to avoid it.  After it was sold, it was completely altered.  Driving back, I look carefully and see how the other houses have changed. I am amazed that I am still in contact with half of the people I grew up with on that block.  It’s over 50 years.  Many of   their houses have also changed.  Well, after all that time, of course, houses change.  A couple of things.  I grew up in Levittown where all the houses were supposed to look alike.  They so did not.  The basic floor plan was the same so when people asked where is your bathroom; same place as yours.  What also strikes me is that I used to call it Leave It Town.  Guess what?  I am the one that stayed.  I only live a few miles away.  I only officially moved when I sold my mother’s house.  My life has been so different than what I thought it would be.

My house was across from the parkway with its woods.  I walked everywhere.  I went to the wrong high school.  It  was almost 2 miles away.  I used to walk back and forth several times a day.  Now, I wall surf. I used to walk at night with my dad for hours on the curvy lanes.  It’s too distressing.

 

The following day I didn’t wake up looking like a boiled lobster as I used to with the Rituxin.  I was just a little thirsty without craving sweet things.  And best of all, only half a pound weight gain.  I gained 5 pounds overnight with the Rituxin.  Shallow, I know.

 

I was like the energizer bunny the next day.  For the first time in months, I was able to walk without holding on.  Toddler steps but still big.  Now, I had a slight bump after the Rituxin.  My feeling  was that I was not strong enough the last times to benefit  from the infusions.  So, this time I tired to do more exercise before the infusion.  Physical therapy has been denied by my health insurance as not being medically necessary.  I have not been physically strong enough to go to the gym . My instinct is that if I amp up the exercise, it will push the drug in my body.  Just a thought.  Two days later, as Tom and I are literally discussing this, Ocrevus called.  Any questions?  Yes, is what I am doing helping with making the drug stick?  I spoke to three people and no answer! No one has asked this question? So, I am trying my hardest to power through the fatigue and minor pain to give my body a chance.

 

I appear to have had a minor bump up in stamina and walking.  My therapist noticed and Tom continues to reinforce this.

 

My next one is next week. I wouldn’t say I am looking forward to it.  I want it over and done with.  I am pushing so that I will be able to take the train and hopefully  the  bus there and back. I am hoping for a bigger bounce from the 2nd go round.

 

And my “secret” weapon?  I am going to try some mj after the Ocrevus.  The more I learn about it, the more optimistic I am.  I hear people are walking.  That is my goal.  What do you think? What has been your experience with Ocrevus?

 

Visibility Disability

I have always been visible.   Part of it from an early age has been because of being interracial.  Especially when I was a child, people look at you and your parents.  I come from a strong maternal line.  My cousins and I range from blonde to deep brown.   We have the same face.  On the rare occasions when we were together as teens, people would do double takes.  The eyes processed what the brain could not.reima-1959-grandma-made-the-dress

My mother, being a colonial of a certain age, brought me up with certain attitudes and expectations.  A lady did not leave the house without hat or gloves.  So yeah, there I was in NYC, in the summer, in the subway, with gloves.  And a hat.  Actually, not such a bad thing.  I have to tell you though those gloves were a bitch to keep clean!  The hats.  I love hats and used to look really good in them.  My mum wore them, too.  So, we could be out, at the grocery or mall, hatless and someone would walk up to us and say “oh, you’re the ladies (girl) with the hats.

Fashion has been my life and consuming interest. I used to work in it and have been privileged to attend pret a porter.  Can I tell you, I was noticed there, too?  Very proud of that one.  I used to go to Europe regularly for a job.  I went after losing it and had a call when I returned home from a former colleague ” You were in Spain and Italy a few weeks ago”  Yes, I was noticed.

Another thing I am known for is my smile.  I like to share my joy.  When I returned to another job  I  was approached numerous times because my smile was missed.

So yes, I am used to being noticed but now is different. Now, I am noticed because of the cane  ( I hate that word) and the spectral leg.  That has become what makes me stand out.

When I was still working,  I worked in a JP Morgan Chase building.  The security guards watched out for me.  One used to see me walking in the morning and help me cross the street.  It made me feel like a fragile little old lady which I am so not, at least in my mind.  If I went out to lunch at the rear of the building, he’d make sure I got on the escalator safely then run down the stairs to help me when I came off.  Another one, a woman, who went to another building, would see me crossing and yell at cars and people and help me.  One that saw me in the building  always worried  when I was on vacation or out for a few days.   She too, would help me up the stairs.

I have been out of work in NYC for over a year.  As I said, the newspaper hawker was glad to see me a few weeks ago.  In December and January, I had to go in and take the same bus and train that I used to.  My husband was overwhelmed by the people who came up and spoke to me and were glad to see me.

I don’t like being visible in this way. To me, It’s not positive. I don’t like being recognized for disability; I’d rather be known for my smile or my style.  I understand that people respect and admire my grit and determination.  This too, is hard for me.  I am just living my life the only I know how to and the only way I can.  It’s not inspirational; it’s just life.  My issues are visible.  Others confront much worse things just not as publicly.

I guess I need to continue because I demonstrate the possible.  I can be a voice and a face against discrimination.  I hate when people speak loudly to me.  I want to say, “It’s my legs, stupid.  There’s nothing wrong with my brain.”  I suppose if my visibility with disability helps others, it’s worth it. Visibility is here to stay.

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.

Postal

I need to get this out.  Consider it a rant, vent and reflection.

I have been worried out of my mind about my postal worker.  We argued at the end of August about his buying a car.  Yes, ok, I get it.  I have bad taste in men.  We have been friendly since 1984.  About 15 years ago, we agreed we should have married but since we didn’t, it really did work out.

Given that , we have never really argued.  We would separate.  Well, we did have a major fight somewhere around 1986 but it sorted.  I never stood up to him until the end of August over the car. Since he has Parkinson’s and mini strokes, limited income, my feeling was that he shouldn’t drive and could use taxis.

Now, my birthday is end September and he always, always calls me, sends me a card, drops by or gives me a present whether I  have been married or living with someone else. Freaked my landlord out once when they came home and found flowers on the steps.  Maybe not on the exact date but within a week.  This time nothing but I know he’s stubborn and not well.  K is paranoid, for real.  He will not answer unless he knows who is calling.  Also, since the 80’s he always has a piece of music for voicemail.  When I left him for real in 1988,  he had Fine Young Cannibals “Good Thing”  for weeks.  There is no music and the memory is full.

We have always been there for each other.  He came over with blues CDs and Clapton when Buster the Biker dumped me (just before current husband).  And he was a drug and alcohol counselor when he was in the army so he has been very helpful to me as I have been on this journey with my husband. I have listened to him and held him as he has cried over breakups and his father’s death.

As I continued to be unable to reach him, I became increasingly upset.  This is one of the reasons I stand by my husband.  He called all the local hospitals for me last week.  No results.  We were about to do a drive by his home today and contact the police.

Yesterday, late afternoon the cellphone rang with a number in Baltimore.  Ah, another IRS scam, I thought.  Voice mail! From K.  But it’s weird.  There is someone in the background with an accent who seems to be telling him what to say and the callback number is different.  I know he has a cousin in Maryland but I begin to freak.  I rang him back. Someone else answers the phone.  It sounds like he says he is a medical resident, whatever that means.  A twisted tale.  Somehow, K  decided to live with his cousin in Baltimore but now he’s in assisted living?  I saw him at the end of August and whilst he had issues walking, he was competent and functional.  His story is garbled and makes little sense. He says he woke in his cousin’s house and crashed into things. This would be normal as he has definitive mobility issues and has been living in a room for about 10 years.  The cousin called the paramedics and he was hospitalized for 5 -6 days.  He was sent to assisted living.  He is complaining about the food.  He says that they are charging him $5500 a month. On his credit card!  Now, K  has been on postal disability since 1988.  His monthly income is much, much less than that.  We live in metro NYC area so there is no way he has that kind of savings.  He tells me that he has to charge it.  I ask him where he is.  Someone puts the brochure in front of him.  He has difficulty reading it but I get the name.  This whole conversation is a torturous process , clearly not helped by my berating him as to why he didn’t let me know he was leaving.

He is a Vietnam era vet.  He also should be a Medicaid candidate.  This whole thing smells and stinks to me.  I keep on telling him he has to get me on his HIPAA.  He is a Luddite and I get the distinct impression he does not know what I am talking about.   Even though we have been friends for over 30 years, I have no standing.  LOL, that’s the reason I married my current husband – to have standing!

I also explain I am extremely limited as to what I can do on a Sunday.  He gives me his landlord’s name and part of his phone number but also says the guy is a Jets fan and won’t pick up the phone.  I also have his psychologist’s number.  Again, no one knows me.  I knew his first psychologist.  I ask if he talks about me.  He thinks so.

So, this morning I call the VA, landlord, psychologist.  The VA can’t give me any information except to agree that it’s wrong and my best bet is to get a power of attorney.  He is in another state.  His cousin’s name is too common as are his brothers.  No callbacks  yet from landlord or psychologist. I gave them the number K gave me.  I asked K what the number is and get a garbled explanation of patching through landline.

I do know where he was living and my husband says we will go there tomorrow.  Husband is concerned about K’s stuff, too.

My college boyfriend is a public defender in MD.  I speak to him every other year or so. I call him and he calls me back immediately.  He confirms my instincts appear to be right; he knows the neighborhood where this assisted living place and confirms it’s in a bad place; and I need to get the POA to truly advocate for K.

So, here’s another thing.  The attorney and I go back over 40 years and K and I over 30.  K and I always reach out to each other in times of trouble.  The attorney called me a few years back because he could see something was wrong from my handwriting on the Christmas card.  He also was nuts after 9/11 because he couldn’t find me.  When he finally reached me several weeks later, he sobbed.  I hold my relationships.  I was surprised this morning that my husband said it’s a good thing.  He usually mocks me.  I am not sure what it means.  Ties that bind?

I believe in the divine and wonder if I am not working right now so that I can help.  Worse case scenario, we know that I’ll drive down.

I am tired of being strong and responsible.

What is love at the end of the day?

It’s not ringing right  for me.  Has anyone had a similar experience with forced assisted living? Scam? Suggestions?

Disabilities, Limitations or Issues

I am having problems with the whole disability concept.  I know I really can’t walk well anymore.  Actually, I usually forget until I try to stand or move.  I told my doctor a few weeks ago that I think and feel I am me until I try and stand.  Her response was that I am me.  No, this is so not me.

I have been out of work for a year. People have been saying to me for much longer than that, that I should go on disability.  Why?  I am not disabled. I just do not walk well or fast.  But especially now when it is clear that I have lost out on jobs because of my mobility issues, the disability question is raising its ugly little head again.

In the past when I didn’t have what I call a job-job, I temped or worked  retail.  Those avenues are closed to me now primarily due to the mobility issues.  So, I can’t supplement my lack of income.  It’s getting serious as I am living off my life savings which were not much to begin with.  Most of the time, mobility should not be a factor in what I do.  I am a technical trainer by trade.  I show people how to use technology to do their jobs.  In addition to the mobility, I am a woman of a certain age (double whammy); I was at my last position for 15 years; and I have now been without gainful employment for a year.

Now, I am not going down without a fight.  I have either been blessed or cursed with grit and resilience.  I consulted a career counselor and her advice was to network in my professional associations.  I might be able to find out what other factors might be impeding me from working and of course, I might be able to network myself into a job.

My doctor told me to apply for the disability. This will not pay my mortgage let alone anything else.

So, I am fighting back.

Did you know that October is Employer Disability Awareness Month?  Who knew!  Through the HR society which I recently joined, there was a session this week on Disability Etiquette.  My plan?  Hike my disabled self with seasonally coordinated cane there and interact.  What a perfect opportunity! Wrong!  The attendees definitely did not want to deal.

However, the presentation was very thorough and informative.  He raised the issue that we are people, not disabilities.  In fact, the presenter stressed that we are people that have some limitations or issues.  I love, love this way of identification.  It makes so much sense.  I do usually refer to myself as someone with mobility issues.  I have always maintained I was trendy and ahead of the curve.

I did have a conversation with someone in the elevator on the way out.  She disclosed she had RA.  She loved my positive attitude.  Being negative takes too much time and energy.

And yes, I came up with another Plan B based on this meeting.

And with that group of people, who had the limitations and/or issues?  Me? Or them?