The End of the Journey

If you are reading this blog post, it means that I have passed. I wrote it before I passed and a friend posted it for me. It was read during my memorial service.

Well, I thought that I was being smart and had my jokes all ready for this occasion. I planned to open with the following: This is a first for me, giving a “sermonesque-type” of speech, at least in a church. Well, it turns out that this is not a first. I did it once before, when I asked our Vicar, Lisa, if I could introduce myself to the new people in the congregation. And next thing I knew, there I was smack in the middle of the sermon.

I think many of you will agree that I have had strong opinions on things my entire life. Well, it’s over. This is definitely my last sermon.

Some may say that ALS has finally won. I disagree. I think I gave it a good fight, just like everything else in my life. ALS, or the Beast, as my husband always referred to it, certainly took a toll on our emotions and threw our lifestyle and future dreams for a loop. I naively thought I could handle most of what it threw my way.

I was interviewed before the ALS Walk in 2017 and I said that the loss of independence was the worst part of this disease, but I was wrong. As I write these words, I have already lost the use of my legs, arms, hands, fingers, and the ability to eat food by mouth and speak. I was willing to accept these changes.

As my ALS progressed, I realized that my fear of losing independence only meant that I was unwilling to compromise and accept help from others. I ultimately realized that there were really two things that destroyed me. The first was losing my ability to communicate with the world. Try it for a day and you will begin to understand the frustrations that many other voice-less people experience, whether it is due to illness, politics, or language. Oh, and you cannot use arms and legs to point either, because I can’t do it. I can still shake my head and move my shoulders a bit at this point.

During my journey with ALS, I met many Clarences, if you have ever watched the movie It’s a Wonderful Life. (Later on today you will have to look it up, along with all the Roman Catholics who are trying to figure out what a Vicar is.)  

The second thing that ALS destroyed in me was having to watch loved ones grieve for you while you are sitting there in front of them. I could not even offer a hug. I could not help them with their own feelings; I could only sit there and watch.

I lost my 21-year-old sister when I was 14 years old.  My father died 10 years later. The first death we all knew was coming, but it was not something I could talk about with my 21-year-old sister. What can a 14-year-old say to give comfort? My parents didn’t even want to let my sister know her own diagnosis. I am more realistic and want to know the truth. My father died suddenly in a construction accident. I was the first to arrive at the hospital because I was working in Manhattan and the accident took place in the subway tunnel being built under the East River. They say he couldn’t wait one more day.  He had to be in Heaven because the next day was Saint Patrick’s Day. My dad was proud of his heritage and loved children.

My biggest fear is dying on a relative’s birthday. If I could ask God for one favor, it would be not ruining someone’s birthday or holiday. I know that this is difficult for some of you to have to listen to, it was just as difficult for me to write. I do hope that this “sermon” will reach my siblings in particular, and have the intent I want it to have, even if it will embarrass some of you into action. It is not something I planned to add to this narration, but perhaps this setting will be a reminder of the Christian lessons we learned so long ago. I remember sitting in the church of my childhood and reading the words printed on the walls surrounding the altar. As I remember them, they read:

“They will know you are my disciples if you have love for one another.”

And to the right:

“Love thy neighbor as thyself.”

Grieving can last a lifetime – so can love. Love is a four-letter word that, in my opinion, too many people are afraid to say to each other, but I have heard it a lot lately.

I had two sisters and three brothers. We had many get-togethers, and then something happened. I believe it was dad’s death that transformed our family. I would like to suggest that we bring that four-letter word LOVE back into action. It works on my husband’s side of the family and it would be a nice thing to copy. I have tried endlessly to solve the rift between my siblings. Unfortunately, as I write this in October 2018, I have not succeeded. ALS did not cause this rift, but it might as well have, because it has the same symptoms. Incurable, untreatable, progressive and fatal. I am sorry for any pain I caused, and I hope you are, too. I think I told you that I was sorry, either in person or in writing. If I missed you somehow, please accept my apology now.

In a spirit of forgiveness and renewal, would you all please turn to a person next to you who is not related to you, and tell them that you love them.  And please join together in one of my favorite prayers:

Lord, make me an instrument of thy peace;

where there is hatred; let me sow love;

where there is injury, pardon;

where there is discord, union;

where there is doubt, faith;

where there is despair, hope;

where there is darkness, light;

and where there is sadness, joy.

– Prayer of Saint Francis 


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The Minutaie

There are a million little things you can do for yourself every second of every day. You don’t need to ask; you simply get up and do it. But what if there were times you couldn’t get up or if you were disabled and dependent on someone else? How long is it okay to wait? I mean, think of a baby. They are as helpless as I am, and most people come to their aid quickly. But when you are an adult with a paralyzing disease like ALS, it feels to me as if I can wait for any amount of time. After all, they know that my disease is incurable and fatal. So why spend time and money on something that progresses onward to my death? It’s pennies on the dollar in healthcare.

There are times when my caregiver is right in front of me and I cannot even make a sound to let them know that I am in pain or if they themselves are hurting me. So a reasonable adult waits in pain. Babies can cry for some of the same reasons I do. It might be my only form of communication at the time.

I do have a question I would like to ask though. If we protect babies at all costs, what about adults? I have good respiratory numbers to keep me alive. So the next move is to slowly decrease my food and to give me intravenous liquids. Does it sound like I am being replaced by an infant? I mean, we are all going to die. I just didn’t realize that I would be dying by an involuntary food strike or I could have joined the IRA years ago (OK, that is the author’s interpretation of what I heard from a hospice representative.)

At what point do we decide a person’s value and who makes the decision? What makes a person worth saving? Is it the number of years they live? Is it because they do not have a rare disease and more money can be earned on their illness (WWJD)?

On April 1, 2018, I wrote a letter to the President of Duke Hospital. I didn’t ask for, nor did I receive a reply, not even a form letter. But all the surveys I get from Duke have had his name on them. Do you really think he cares about an individual response, or just tallies up the responses his survey company gets? I bet I know the answer. After all isn’t Duke a for-profit hospital?

Got onto my soapbox again and off topic – the minutiae. So who scratches your itches? Who drives your power wheelchair when you can no longer move your hands?

Who opens the door when there is no handicap button, or you can’t push it? Who moves the trash can so conveniently placed in front of that button?

Do you care? Do you notice? The Americans with Disabilities Act has been a law for more than 25 years. Do you know any part of the law? I bet you know about driving with a cell phone, though.



(This blog  was  written  with eye-tracking)

The 10%

IMG_0669This is the blog I mentioned in Wonder Woman (Sept. 8, 2018), when I promised to tell you about the other 10% that I have not written about before. It may probably the give you the willies, but why bother writing if you don’t tell the truth? Wouldn’t that make you really mad. Like fake news?I asked for input from other PALS and CALS and will try to include it if I got any input or I may decide that I need more than one blog to put it out there.

When I finally stopped working, I stayed home without an aide. It was OK for a few months then I needed an aide. It was a little strange getting naked and having a stranger give you a shower. We did fine. All of my aides were professionals and most all did a great job for me. There were some clashes in personalities and I had to get rid of at least two aides who got on my nerves.

Then there is the indignity of using the toilet. Your body is the test ground. You either accept the way the aide cleans you or you have to direct them about what you want. I had to ask one aide to change gloves after I used the toilet and before my shower. I now have an aide who goes through at least eight pair of gloves in three hours. But now Medicare pays because I am on hospice. Constipation, diarrhea, and uncontrollable cramping and quick diarrhea are some other fun parts of the disease that I have will leave to your imagination, or have I already ruined the best part for later? There is also the constant hacking after eating and the constant phlegm ball you feel in your throat. PALS you may want to ask your doctor about a nebulizer if you have this problem.

I go commando because it is easier for me. Putting on pants is impossible. Skirts are now my new form of clothing. I put them on over my head once I am in the wheelchair, then the blouse is next over the head. Works for me. I also had some wonderful friends and neighbors who altered pants for the winter and made me an adaptable jumper.

I went through several types of beds and devices in order to attempt to sleep in my own bed. I already had a hospital bed waiting. I could not get comfortable and I woke my husband almost every night for some annoyance. He was still working at the time so this was a major inconvenience for him. I eventually gave up and slept in the living room in my lift chair. This worked OK for a while. I would occasionally have to call my husband on the home phone in order to wake him if I needed something. You see, I lost my voice and my husband is hard of hearing. Karma.  Several times I have had to use my iPhone call to wake my husband. Now I have a Tobii that allows me to call, text or set off an alarm.

My husband did not like the idea of me sleeping in another room so he went out and bought me a second lift chair. That is the most comfortable lift chair and it was on sale! I would recommend it to anyone. It reclines fully like a bed and gave me the most comfortable sleep.

I had to give it up when I lost a lot of upper body strength and I could no longer use the sara stedy to pull myself up. I was now begging to use the Hoyer lift to put me in and out of that hospital bed. I decided to give it a try again for the sake of my caregiver, my husband. The last straw came when I had a fill-in aide and I slid out of the chair and onto the floor. To my surprise, EMTs are not trained to use a Hoyer lift. Luckily my aide knew how to use it and helped get me off the floor. EMTs are also not in a hurry if you don’t appear injured. I still wonder how they would have gotten me off the floor if it had been an emergency.

I now sleep in the hospital bed with lots of pillows and an air pressure mattress provided by hospice. It works wonders. No more pressure pains waking me up in the middle of the night. My hubby loves that part a lot. I don’t have too many problems now that I have become the pillow lady. Pillows under my arms has also solved the neuropathy in my hands so far.

But it is a problem when I can’t activate my speech device to wake my husband. We still have problems positioning the Tobii at night. Part of the problem is that I can no longer use the remote control for the bed. I don’t have enough strength in one finger to change the bed’s positioning. Is there not one hospital bed company that can make a remote control with infrared (IR) technology? Having IR technology would allow me to and all eyegaze users to use their eye-tracking devices to change their bed positions.

Losing arm strength was a huge fear. I cannot comb my hair, brush my own teeth, clean my ears, or scratch, pick, rub, blow, or clean my nose by any methods. Forget about itching anything; it’s an impossibility. You have to depend on some one else to do these things. Wedgies are a painful blessing when you go commando and I find that a sanitary pad works wonders when properly placed. So are there any volunteers out there?

I have learned to live with a lot of annoyances. I play a game that I call mind over matter to get past a lot of these things. I want my caregivers to have lives too. I just imagine the pain away. It used to work when I had a leg cast with an itch I could not reach. There was no way I was putting something down the cast that would cause further problems.

I  am not sure if you got the whole 10%. I will need to make another review tomorrow to see if I left out any goodies you just have to know about. And I still have the cough from my 17 hour Florida nightmare trek home. Hospice nurse and priest visiting today; seems appropriate somehow.