Election Day 2008

Got back a little while ago from my visit into the Land of the Living.  Thank God for Judy, who is the only person lately that comes to get me out into the non-ALS world [which I call the Land of the Living].  I love just sitting and people-watching, not always from the window of an Access-a-Ride bus.  And to talk about something other than ALS.  But I accept that my apartment is not conducive to entertaining.  It’s embarrassing to have a commode and certain equipment in full view.  Two of my former students came to visit me and cook me dinner, and I didn’t think about how inapproriate this place is for visitors.  

And leaving the apartment seems to make others feel, well, a little uncomfortable.  I thought my mission was to be out there and show that one can live with ALS, but I guess it didn’t work out that way.  This disease makes other people very nervous and confused.  I am getting tired of hearing how people don’t know how to act around an ALS patient, and what a frightening disease it is for people to look at.  And most of all, I am sick of hearing “well, what is he/she supposed to say/do?” when I relate to other people that someone else was disrespectful or rude to me.  All I can say is “learn, people!”.  And it would be nice if “friends” could help set people straight, and it can be done nicely.  Yes, it’s not easy to be around me;it’s even harder to BE me.  If someone asks you questions about me, or refers to me in the third person, with me sitting right there, would it kill to say “you can talk to her; she hears and understands”.  Recently, when an ignoramus at my hair salon screamed in my ear “CAN YOU PLEASE COME TO THE BACK”, my aide politely said “Please don’t yell; she isn’t deaf”.

Case in point:  I recently related to a neighbor that it was totally unnecessary for the president of our co-op [who I might add was at my polling place today wearing a button indicating that he was there as a poll-watcher for the Republican party -- blech!!] when he explained at the annual meeting to another resident who complained about our automatic door [which I fought 21 months for], he said “It was not the building’s choice to put in that door; we had a resident in a wheelchair who put in a complaint”, while looking over at yours-truly.  So this neighbor said to me “Well, what was wrong with that answer? What should he have said?”.  Well, let me tell you what he COULD have said:

“It’s the right thing to do”  OR

“It’s the law that all areas must be accessible to all of our residents.  We were not in compliance for 16 years, and we got away with not retrofitting the building because nobody really needed it — until 2 years ago”

What is wrong with either of those answers?  And as for my neighbors and “friends” who may be confronted with these people who never imagine that they or a member of their families might be in a wheelchair some day, why can’t you turn to the person and say:

“You know, one day it could be you, or someone in your family, that uses a cane, walker or wheelchair.  Won’t you be thankful that someone before you, fought for accessibility, so you won’t have to?”  It doesn’t have to be hostile or confrontational.  C’mon people — none of us is getting younger and most of you will live to a very old age.  Chances are, many of you will have mobility issues sometime in the future.  Why do you all look at me as if I am some freak of nature who should shut her mouth and just be grateful I am even allowed to live among the Living?

Which brings me to my polling place.  I elevated my wheelchair and STILL couldn’t reach the top row to vote for president!  Judy had to come in and pull the lever for Obama.  AND NO — don’t even go there!  don’t tell me I should have gotten an absentee ballot!  I am not in a nursing home, housebound, or out of town.  We [disabled people] are supposed to be able to vote in one of the hundreds of accessible voting booths throughout the city, that obviously didn’t make it to Rego Park.  Even Judy was outraged because where she voted in Roslyn, they had an accessible booth.

Right now I am praying that tomorrow we will have President-Elect Barack Obama!    

How Technology Changed and Enhanced My Life with a Disability
When I was diagnosed with ALS/Lou Gehrig’s Disease in 2004, I fought isolation and dependence with the help of life-changing technology. Without it, I would have been institutionalized.
Read More

Forced to Sit Still and Shut Up — Life Before, and During ALS

Forced to Sit Still and Shut Up — Life Before, and During ALS

Shared via AddThis

Inexpensive Bargain Pinatas For a Cinco De Mayo Fiesta on a Budget

In these tough economic times, you don’t have to give up on throwing a great Cinco de Mayo Mexican fiesta. This article will tell you where to go online for pinatas that won’t break the wallet.

See more at http://www.associatedcontent.com/article/1594715/inexpensive_bargain_pinatas_for_a_cinco.html

Some Things Make Me Sad…

I am very sad about a couple of things this week.  First, I am really sad about the death of Natasha Richardson.  It was so quick, so senseless, so arbitrary, so unprovoked.  It is a reminder, once again, that life is so fragile and so precious.  You can be fine one minute, and dead the next.  They called it “talk and die” syndrome.  One minute you’re fine, talking, walking, refusing medical help, and suddenly, [could be a few hours or minutes later], you’re vomiting, you have a severe headache, and may even collapse.  Very scary, and very sad.  The news reports that I heard, said that impact on either side of the head is more dangerous than impact to the front or back of the head.  Hitting the side of the head can actually knock the brain around, and cause blood to collect in a hematoma.  I thought back to how many times I have fallen, especially in the early stages of my ALS, knocked my head, and felt just fine afterwards.  I think we can all look back and recollect an incident like this.

I am also sad that our sensitive and ultra-conscious president found it so easy to make an politically-incorrect comment on the Tonight Show yesterday.  He was actually  making fun of his bowling, and said it was like the Special Olympics.  His staff called the Special Olympics to apologize even before the show aired.  We are all so aware of racial and ethnic slurs, but slurs against people with disabilities still roll off our tongues so easily.  I am also guilty of blurting out words like “retarded”, “lame”, and, ironically, “spastic”.  This is ironic because “spasticity” [stiffness] is my most troubling symptom.

And here’s the thing that makes me really sad [and mad too]: after a huge mess last year, where my bills fell behind, through no fault of my own, I have been really on top of things, and my bills have been meticulously up-to-date.  But apparently, my fax machine stopped working properly, and the pooled-income trust received faxes from me that came in all black.  They knew it was from me, and neglected to contact me to tell me.  If I didn’t notice that my balances online showed that the bills hadn’t been paid two weeks after I faxed hem, I never would have known.  When I called to find out why my bills hadn’t been paid, and asked why nobody called to tell me there was a problem with my faxes, I got the most ridiculous answer: “We didn’t have your number”.  I found this unacceptable since they have a whole file on me.  I had to give them all to a friend to fax from the office, but the phone calls are coming in already, and I’m embarrassed.  And the thing is that nobody has the least bit of compassion when I tell them that the bills are paid through a trust.  They probably think I am some rich trust-fund baby, when nothing can be further from the truth!  So, late fees are coming my way.  In order to let the NYSARC trust know how damaging this was, I will have to send a letter, because nobody was willing to call and make the noise over the phone.  Needless to say, I had to shell out money for a new fax.  Oh well. In the scheme of things, I guess this is a minor rant.

But here’s something that I found really sad, and I hope my feedback helped her [she said it did].  I met a woman Tuesday night whose brother has ALS.  She’s in the city and he is on Long Island.  She hasn’t seen him in a year.  She can get to him– that’s not the problem.  He is extremely depressed and stays in bed in the upstairs of his house.  His wife is installing a stair lift for him in the hope that he will go downstairs.  The sister I met says that when she calls on the phone, they don’t want to talk about ALS.  So she says that she sees nothing they can talk about, so there is no reason to visit him.  I told her that it is probably depressing him further that his own sister will not come to see him, and why do they have to talk about ALS?  I reminded her that there is still an intelligent person inside.  So she said “well I can’t tell him about anybody else’s life, because it will upset him by reminding him of what he can’t do anymore.  I can’t talk to him about politics, because none of that is relevant to him anymore. Same with the arts.” I suggested they watch TV or a movie.  She was concerned that the media was not relevant to him anymore.  I told her this saddened me because he is not his disease, he can still live, and be entertained, and laugh.  She said I helped her, that she will go see her brother and try to get him out of bed, or at least watching TV, or read to him.  I don’t know why people think PALS are not people anymore, that the only subject that interests us is our disease.  When I see people, aside from explaining a few things they need to know, I don’t want to talk about my ALS.  And when I don’t hear about their lives, it distances me further.  I have people I was very close to, that I either never hear from anymore, or if I do, tell me nothing about their lives anymore.  Because of this, I don’t feel attached to people I felt a closeness to, before ALS.  Or maybe it’s a way for them to break the attachment, either purposely or subconsciously.  I don’t know.  What I do know is that many people who were a big part of my life, are not in my life anymore.  I’m told serious illness can bring them closer or further apart.  I’m happy to say that, in most cases I know, it brings people closer.

I am happy that my friend Andrea is coming today, and I can ask her to help me with some things that have been hanging — a new rug for my bunny’s cage, a package that has to be sent from the post office, pictures to be hung, etc.  And Judy is coming for our weekly Starbucks outing.  I am also happy about my physical therapy, which started yesterday as an outpatient.  The PT is trying to strengthen my stomach, and loosen up my legs.  So far, it’s the closest thing to a gym workout I can have. I hope to burn some calories.

ferncohen.com
How a Move Between New York and California Made Me Miss the Academy Awards
A move to Los Angeles from New York in my youth was a bigger adjustment than I bargained for, even the three-hour time difference.
http://www.associatedcontent.comarticle/1499426/how_a_move_between_new_york_and_california.html

Truths We Must All Embrace to Be At Peace

I am not preaching here by any means!  Click here to see the eight truths I wish I had accepted all my life. I’ve had to accept these truths since ALS, but I wish it didn’t take ALS to wake me up! The sooner you can accept these, the better off you’ll be. If I had embraced them sooner, I could have bypassed a lot of anger and, thus, depression [which is really anger redirected at yourself]. I would be interested in feedback, either privately or in comments. Do you agree with these? Has any of these impacted you personally, as they have impacted me? And, do you have any truths to add to this list?

Random Thoughts February 14, 2009

As each stage of this disease comes about, I find myself adjusting to a “new normal”.  For reasons of hygiene, I have to be woken up by the night aide at 6:00am, to do some personal care.  This means less time sleeping in my bed on the bi-pap vent.  So, I need to nap later in the morning with the bi-pap on.  Actually my doctor wants me to use the bi-pap more during the day.  I have been resistant, because I know that needing the bi-pap more than sleeptime means the disease is progressing.  But the reality is that the circles and puffiness around my eyes is due to insufficient oxygen.

And I have been perfect in monitoring my medication, except for yesterday.  I didn’t realize I had run out of baclofen, and could not take it last night or this morning.  I am reading that the withdrawal can be wicked and even dangerous, so I am biting the bullet until the pharmacy opens in about 90 minutes.  In the meantime, I tossed and turned last night and felt feverish; that is from the withdrawal.  

I am accustomed to giving the aides the television remote, but yesterday I had a rare opportunity to watch an IFC movie.  It was a Japanese movie called “Nobody Knows” about a mom who abandons her children to fend for themselves.  If there was ever a movie to kick up abandonment issues, this was it.  I was bawling!  And then at night I watched the special Diane Sawyer edition of “20/20″  about Appalachia.  More bawling.  I am realizing that I am really very hurt and sad, and these two shows served as catharsis for me.  

I had to put this blog on a site where I could monitor comments.  I discovered way too late an embarrassing comment on my other site by someone who needed to get out some frustration I can’t show all happiness and positivity all the time.  I am alone, and I have to deal with most things by email or using relay calling.  Just addressing an envelope can take a lot out of me. It’s the little things that frustrate me sometimes. I always believed in presenting the hardships as well as the joys and blessings.  If it gets too hard to read, you don’t have to read it.  I have no choice.  

On Monday, I realized I had no dial tone on my phone.  Verizon kept putting me through all kinds of troubleshooting hoops.  When they suggested I do some kind of test on my jack, I knew this was beyond all realistic expectations.  I also knew I had nobody coming to visit in the near future who could do this.  So I sent off an email and I very politely told them that I am disabled and wheelchair-bound, so getting down on the floor was not an option.  On Thursday, a repairman came out to repair it.  On my weekly foray into the bathroom [the only time I go in there, I must have severed the cord with the wheelchair.  The Verizon engineer needed to rewire and put the cord up higher.  But I was more than three days without a house phone. 

I appreciate when people are sensitive to my feelings, but wish everybody didn't walk on eggshells around me.  Some of the people I used to be closest to, I don't know anymore.  Some people tell me nothing about what is going on in their lives.  Are they afraid if they tell me the good stuff I will be jealous? Are they afraid the bad stuff will upset me, or that I won't be empathetic?  Are they afraid I will smell or look scary?  I have had a few people recently tell me what they really think of me and why they are angry with me.  Truth sometimes hurts, but in the end it helped me to understand that other people probably feel that way and won't tell me.  It's like the 800 pound gorilla in the room.  I've made mistakes along the way, but some of the very people who cheered me on later told me off.  I was too truthful and too transparent. I hung onto every promise, every word people said about how they would take me here, there, and everywhere.  Now I listen, but say "yeah, yeah.."  I wish some day that people will know what to say and what to do around people who have chronic [terminal] illness.

Update January 29, 2009

Did anyone watch the new TV show “Homeland Security” the other night? At the end, they had a story about one of the Customs and Border Patrol agents who had to stop working up in Buffalo because he was diagnosed with ALS, and they showed a huge fundraiser they had for Jay. I had seen a request for donations for Jay on Facebook too. This was more exposure on national television for ALS.

A couple I know — the husband has ALS — has been resisting the PEG feeding tube. Now, he isn’t eating enough because it’s too exhausting for him, and it already takes him two hours to eat whatever he is eating. They are thinking about the feeding tube now. The problem is that he is so progressed that his breathing is weak, which makes it more risky to do the procedure. This scares them, although there are certain accommodations that can be made. I was advised early on to get the PEG tube even before I needed it, as I was advised about getting equipment before I needed that too. So I got my PEG in 2005 way before I needed it. I got good advice, and I’m glad I followed it.

One piece of advice I didn’t follow was to put on my Bi-PAP for a few hours during the day, especially for naps. I started doing that this week, and I must say it makes a nice difference. When I use it, I am less likely to doze off during late morning, and it gives me a little more energy. I guess I was resistant because I keep hearing that right before the end of life, PALS [people with ALS] are wearing the Bi-PAP 24/7, and when that fails to help, they have to make that all-important decision of whether or not to get the tracheostomy and go on mechanical ventilation. So I viewed use of the Bi-PAP for anything over and above overnight sleep time as a step closer to the end. But, in reality, I have only been sleeping about 6 or 7 hours, and should really use the Bi-PAP more hours anyway. And, sitting around wheezing and/or short-of-breath because I was resisting the Bi-PAP was a stupid and uncomfortable option. My seatbelt was busted for several weeks, and finally repaired yesterday. While the mechanic was here, I asked him to adjust the footrests so they don’t keep falling down.

A little advice about credit cards and loans. Several months ago, I negotiated with one of my credit cards to take my old debt and pay a lump sum less than the balance, and get rid of the card. Well, they graciously let my bank know, and the bank cut down my credit limit on my overdraft coverage [for which I was never delinquent, by the way]. I don’t really care because I planned earlier last year to never again use the overdraft coverage and pay it down. However, I learned that when you are delinquent on one debt, they can inform your other creditors, even if you have had a pristine history with all your other creditors. So know that these credit card companies are getting very devious in this recession!

The VA has listed ALS as a presumptively compensable illness, meaning there may be an association between it and military service. This is an issue that was the topic of ALSA advocacy last year in Washington DC, so bravo for ALSA.

Emotional Safety

By now, everyone is familiar with the proposed subway, bus, and railroad fare hikes by the MTA.  But did you know they are also planning to double Access-a-Ride paratransit fares too?  This is crazy because most disabled people are below the poverty line, and are the most underemployed segment of the population.  So, if this fare ike goes through, a round-trip of $4.00 will now be $8!  This is a lot of money to some disabled and/or elderly people, and will force a lot of paratransit into isolation and house-boundedness because they won’t be able to afford to go anywhere.  But Manhattan Borough President Scott Stringer is earnestly fighting this, alongside Senior Citizen and Disabled advocacy groups.  Let’s hope his efforts are successful.  Stringer has been holding hearings and town hall meetings on the subject.

A fare hike on paratransit will be a hardship on clients, myself included.

Everybody needs a safe place to let off steam and vent, without being judged or preached to.  And everybody needs a place where they can express disappointments and heartbreaks, and – yes- even anger, without friends and loved ones getting all sensitive thinking they recognize themselves, and either getting on the defensive, or getting all angry and preachy and coming back with scolds like “you know, there are people worse-off who don’t complain” or other criticisms.  Worse yet are the ones who preach “you should keep a gratitude journal” or “you should find something positive”.  Everybody, sick or healthy, has the right  to some anger as long as it is vented in a healthy way.  The definition of “depression” is “anger directed within” or anger “held in”.  Many people who suffer from depression are people who never seem to get angry.  However, I am reminded once again that everybody has to find out where, and to whom it is “safe” to let out true feelings, and often it is only to people who have been through, or are going through, the same experience.  Anyway, we know there are people worse off than we are, we do think about positive things, we are grateful for what we have, etc etc.  I for one, don’t sit around in a constant state of outrage. But I’ve decided to take some of the raw emotion and express it privately, in safer places. I have found out that a blog is not safe at all.  And a difficult lesson I had to learn was:  sometimes the very people who encourage with “You go girl!” and “we love your feistiness” are the very ones who turn on you later, saying “you’re just too angry”.  I had a former neighbor who was also a close friend, end our association last month for this reason.  Here was a person who was most supportive and encouraging. Now the friendship is over.  I will never trust anyone again who tells me “You go, girl!”.  And of course I begin to wonder “is she just able to verbalize what everyone else is thinking?”  She claimed in her comment that people weren’t coming around anymore because of my “attitude”.  Maybe this ex-friend just spoke the truth, and once I got over the shock and hurt, I was actually grateful.  I remembered that saying about the truth setting you free, etc etc.  So true!

One thing I have learned is how unimportant it is to accumulate “things” that are no longer useful to me.  Dust is an issue for my breathing, and the aides are not obligated to do more than light housework.  I was shocked when one of the aides swept under my bed and behind my microwave and pulled out dust balls the size of animals!  The aides are not supposed to do heavy cleaning, so I can’t force them to do this.  When they do, it’s a bonus.  So I think I will have to hire a cleaning person at least once a month to move furniture and do heavy cleaning, OR pay one of the aides extra to do a twice-monthly deeper cleaning.  This week I also donated my remaining craft supplies and stereo/boom box that hasn’t been used and has been collecting dust to the Brooklyn Center for Independence of the Disabled [BCID].  It felt great!  I need to unload some books — a very hard thing for me to do — which are some of the worst dust-collectors! But, on the other hand, nobody can really appreciate the pain of getting rid of these things.  It’s like watching parts of me die, because it’s an admission that I no longer need these things because of the things I will never do again.  List go around in my head– I will never again: go on a date, do crafts, go to a gym, travel, go to a concert or live theater, etc.  These are things disabled people can do, but I can’t do because of my circumstances of being alone.  So every time I look at something at home and say “I haven’t worn that, or used that in 4 years, and probably won’t again”, it’s a part of my life dying.

 I am kind of cocooning for the winter. I am afraid of getting a serious infection so I am taking care.  I actually received an invite, through a disabled organization, to attend one of the inauguration parties.  But without a hotel room and a ticket to the Inauguration, it really becomes impossible. Hopefully in May, I can go to Washington with ALSA?  I really want to be involved in activism and make a difference.

I Don’t Make Resolutions, But….

Call it a resolution if you must, but what I would like to do in 2009 is to repair relationships that have been suffering, especially if my attitudes and actions contributed to the damage. It will involve forgiveness on my part, listening to others, and putting myself out to initiate contact in some cases. I would also like to stop finding fault with those who are in my life, especially people who are there for me. Yesterday I used relay calling to wish family and friends a happy new year. Unless you listen to the operator, it sounds like a sales call, so people sometimes hang up on the operator. But it’s the closest thing I can have to a telephone conversation. I type, the operator reads what I type, and the other person talks, and the operator types what the other person says. The advantage over instant messaging or email is that you don’t have to wait until the person is online, and the other person can feel like he is having a real phone conversation, even though there are slight delays [although those operators are fast, and I can type while the other person is talking, so it flows nicely]. It’s mostly the older people who don’t “get it” at first. I have always found that, when I am in a funk, it helps to call, email, or write to someone I have not had contact with in a long time. Also, this morning I did something I don’t do often enough, and will try to do more: I thanked Lynette dor taking such good care of me and cleaning up my pukey messes yesterday.