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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