Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:02):
Welcome to book Spendroom. I'm your host, Chris Cordany. As
you know, we're just getting out of May and that's
ALS Awareness Month, but really every month we want to
see advancements and studies looking to detect, prevent, and cure
what is commonly known as Louis Garrigg's disease. With me
today on book Spectrum is Rachel Kerr Schneider, whose husband
(00:24):
died of this devastating disease, and in her book The
Widow Chose Read, Rachel Waites writes about her and her
family's life before her husband was diagnosed, during the care
for him and his suffering, also after the passing. She
chronicles how all of this changed her outlook on life,
her family. It's all in the book, and of course
she offers help to so many of those who are
(00:46):
grieving and having difficulty moving forward with life. Welcome to
book Spendtrum, Rachel.
Speaker 2 (00:52):
Thank you, Chris. It's a pleasure to be here.
Speaker 1 (00:55):
It's great to have you here, and I want you
to take us back. We'll get right into it. The
book is called The Widow Shows Read My journey with Jesus,
John and Als. But take us back, you and your husband,
John had a nice family life and partnership, but there
were some sciences health was failing, and that's in the book.
I'm not going to reveal everything because people should get
the book, But what was going through your mind when
(01:18):
you first learned your husband was suffering from ALS?
Speaker 2 (01:22):
Well, Chris, I'll tell you I had no idea what
it was. And that's not uncommon because it is still
considered a very rare disease. There are about only thirty
thousand people currently in the United States that are quote
living with ALS. At any given time, there will be
between five and six thousand that will receive this diagnosis
(01:43):
during this year. My husband was diagnosed seventeen years ago,
and I'm sad to say that the diagnosis has not
changed in all this time. It is literally a death sentence.
You're given between two to five years to live. There
are technologies that have changed to help in caring for
(02:06):
someone with this disease, but there is still no known
cause or cure. That's why the awareness is so important
raising money for continued research. They do believe that these
neuro degenerative diseases such as Hodgkins, not Hodgkins Parkinson's Huntington's,
(02:27):
Alzheimer's and ALS are maybe somewhat connected. So if they
can figure out the mystery of one of them, they
might be able to help in cures for all of them.
And that is why it's so important to remind people
about this disease, because we tend to isolate when we
get devastating news like this.
Speaker 1 (02:48):
This is a rare disease, ALS, and I know many
of us know it as lou Garrig's disease, as I
alluded to it before. But as you said, and you
wrote in the book about it, it's but it's very
hard to watch somebody you love having to watch I
having to watch their muscles kind of disintegrate systematically. For
(03:09):
those of us who are and of course those of
us were those who were listening who do not know
much about the disease and have heard about it from
a distance and watch the ALS challenges. Please describe for
us what this does to somebody.
Speaker 2 (03:22):
Absolutely. I will tell you that it's not unusual for
individuals who are ultimately diagnosed with it, it can take
up to one to three years to figure out exactly
what's going on. It's not a diagnosis any doctor wants
to give. It's not a diagnosis any patient wants to get.
And for my husband, he was losing the strength in
(03:43):
his left foot, it started to drop. So he was
actually seeing a neurologist for about a year before they
were able to kind of figure out something might be
going on. And he just happened to be due for
an executive physical at the Mayo and so he was
supposed to go and then spend the night up there.
(04:05):
It's about two hours from our home in Minnesota. And
he called me that night and said, I'm coming back home.
They want you to come back with me tomorrow, and
I thought, that's that's not the plan. John. He goes, no,
I'm coming home tonight, and I never will forget Chris.
He walked into the room, the bedroom, the boys room asleep.
I was reading a book and he walked over to me.
(04:27):
He was as wide as a ghost and he just said, Rachel, Uh,
they think I've got this disease als and I'm going
to die. And I'm like, okay, wait a second. What
was slow down? Wait a second? And I knew that
my husband wasn't given to being overly dramatic about things,
and I said, all right, tell me again. He said,
it's Luke Garrigg's disease. I'm going to die. I go.
(04:48):
I don't know what that is either. So we went
back to Mayo the next day because I was like,
you know, we live in America. I'm sure you're not
going to die. There's got to be something that can
be done. Unfortunately, even now, Chris is there is no treatment.
I mean there is zero. You do not recover from this,
there's no treatment. Amiotrophic lateral sclerosis actually damages the motor
(05:14):
neurons that carry the messages from the brain to the muscles,
so that the muscles then just do not work anymore.
It progresses through the body. Sometimes it starts at the
lower part of the body and works its way up.
Sometimes it starts at the upper part of the body
and works its way down. Ultimately, what happens is your
(05:34):
diaphragm is a muscle and it stops working, So your
ability to breathe stops, and all of this happens while
your brain stays completely present. Imagine having to scratch your
nose and you can't lift your hand to get to that.
You're laying in bed and you want to turn over,
(05:57):
you can't do that. So it is it is. It
is a brutal, brutal disease. I wouldn't wish it on
my worst enemy, and I will tell you it is
something that is. It's it's traumatic to watch a loved
one go through any health challenge, but you know, something
like this, knowing there's absolutely nothing that can be done,
(06:20):
adds an extra an extra layer of hopelessness to the situation.
Speaker 1 (06:26):
With us. As Rachel Kerschnetter, she wrote the book The Widow,
which shows read my journey with Jesus John and als
what was going through your mind, your mind when your
husband came to you with a diagnosis.
Speaker 2 (06:39):
Well, first of all, I thought, Okay, they got to
be wrong. There's got to be something. There's got to
be We live in America, for goodness sake. Everything is
possible in America, right, I mean, we have the best
of the best of everything. So I thought, this can't
be right. And it's not unusual for people not to
know about it, because, as I said, it's a very
(07:00):
small community. I didn't know anyone. I hardly had heard
of it. And now you know, so you get up
to speed pretty quickly. I will say that we were
both numb I mean shock and numb is where you
go where a lot of us go when we get
news that our brain, just a brain can't handle it,
you just kind of go okay. So we actually waited
(07:22):
for over a year to tell our young boys about
this because John was not that symptomatic. You had to
look very closely to see that something was off. Within
a year, though, it became much more noticeable that something
was wrong with Dad, and we sat them down and said,
(07:43):
you know, Dad is sick and we need to let
you know what's going on. And so my youngest son, Jake,
who was eight at the time, he said, okay, is
Dad going to be in a wheelchair? And we said yes, okay.
Second question, is Dad going to get out of the wheelchair?
Probably not. Third question, is Dad going to get better?
(08:03):
And it was at that point Chris that you know,
you never want to lie to your children, but you
sometimes don't necessarily need to tell them everything. So the
answer was, you know, Dad may not get better, but
we know that God can make anybody. He can heal
them of anything at any time. So we're going to
(08:24):
say it, continue to say our prayers every night and
ask him to make Daddy better. But in the meantime,
we're going to do our best to take care of
him as best we can. And that was pretty much
where we left it for that discussion right there.
Speaker 1 (08:39):
The first time I heard of ALS was when I
was very young and I watched the movie The Pride
of the Yankees. I was probably early primary school, if
you will, because my parents were Yankee fans. Was on
Channel eleven he were in New York at the time, WPIX,
and it was on several times after. But that was
the first time I heard of it. I didn't know
anything about it. I did look it up, but again
(09:02):
that's only from watching the movie. I'm not sure if
your kids saw the movie or knew much about it.
But how difficult was it to explain this particular disease
and diagnosis tore to children as young as in their
primary school?
Speaker 2 (09:15):
Agentes, You know, I don't know that we did for
a while, Chris. I think it just became a process
of them watching their dad. You know, when you're living
through something like this, you don't really see it all
happening at once, right, because the progression is slower, I
(09:38):
should say, but looking on the outside, I mean, people
would see John one day, he's using a cane, and
it seemed very quickly, then he was using a walker,
and then it seemed, oh no, he's in a regular wheelchair,
and then oh no, he's in a motorized wheelchair. So
from the inside out, my boys. I will tell you
when I asked my husband after this diagnosis, do you
(10:00):
want to do you've got two to five years. Is
there something on your bucket list that you just want
to do, because we got to do it and we
need to do it Quickly, he looked at me, Chris,
and very quietly just said, I just want to spend
as much time as I can with you and the boys.
And as much as I would have chosen something very different,
I knew that I really needed to honor his wishes
(10:23):
and that's what we did. So what I will tell
you is that, you know, I never paid attention to
wheelchair accessibility until we had a wheelchair.
Speaker 1 (10:33):
You know.
Speaker 2 (10:33):
It was it was these things that then that we
had to navigate as a family. How do you even
get I never even knew how to get into the
school with a wheelchair well, or church. You figured, you know,
you figured these things out and they become a part
of a part of your life and the boys. What
we know about children is they are very resilient and
(10:54):
they usually will take their cues from their parents, the
people around them, and John because he wanted to keep
life as normal as possible for as long as possible.
That was kind of where they went. And it was
probably February of the year of the year that John died.
(11:14):
He turned fifty in January, he had we got the
hospice orders in May. He passed in September. It was
that in February of that year that my oldest came
to me and said, is Dad going to die? And
I think it was at that point in time, you know,
I said, yes, he is, that we are because it
(11:37):
was just too obvious that something, you know, he was
not going to survive this. Although I would tell you,
being the person of faith that I am, I thought,
you know, if God's going to heal anybody of this
atrocious disease, it's going to be John. You know, not
because of anything I've done, but just because He's a
good God. He's going to do this. It's going to happen.
(12:00):
And I believe that sincerely and wholeheartedly for at least
two years and then I had to realize Chris, that
this story wasn't going to end the way that I
thought it would, and then had to just really focus
on how do I how do I help John finish?
Speaker 1 (12:17):
Well, you did have to make a lot of adjustments
to your to your lifestyle, at least at that point,
major life changes, if you.
Speaker 2 (12:26):
Will, Yes, yes, I mean I've never I've never you know,
the medical equipment that ended up in our house, breathing machines,
respiratory things, hospital bed, I mean all of it. The
whoyer lift, you know it does, and then people coming
in coming out, you know, helping John Shower took two
(12:47):
hours to set up the room to wheel all of
those things. I mean, you know, and I know there
are a lot of people out there that are that
are in the midst of caregiving for a loved one now,
and just know that whatever you're able to do, however
you're doing it, give yourself some grace because taking care
of someone is probably the biggest act of love that
(13:10):
that you can demonstrate to someone, whether they're in your
family or not. And I know it can be thankless
and it can be overwhelming, but please don't think for
a minute that it doesn't mean anything. It means everything.
Speaker 1 (13:24):
Rachel, dealing with a terminal diagnosis of a loved one,
probably it has to be tough. But and you reveal
this in the book as well, this wasn't the first
time you when John experienced this. John's brother was diagnosed
with a terminal disease previously. And probably somebody listening right
now hasn't picked up the book that would think maybe
(13:46):
that would make it easier for you to prepare. But
think about this, how did going through that before? Maybe
prepare you, but or perhaps worry you a bit more
after the news of John having ail US.
Speaker 2 (13:57):
You know, I will tell you, Chris that when Ronald,
when Ronald died and he was diagnosed with HIV, that
then turned into AIDS and he was forty when he passed.
And of course now that's not so much an illness.
They can manage that. It's fairly treatable now. But back
(14:19):
in the day he was undergoing experimental processes as well.
John went through went through a few too. I think
both of them who they were both very successful in
their careers, and they both approached these diagnosies with dignity,
and they both wanted to know that they had done
(14:39):
everything that they could, and they did in very different ways,
but experimental treatments were something that they embraced and tried.
They may have been successful for a minute, but not
by much. But yes, I had hoped. I think Ronald's
passing what it but it did. What it did for
(15:01):
me is it's just really helped me realize that, you know,
we're not guaranteed anytime in this world at all. And
and I think that making plans, I'm a little bit
resentful because I wish Ronald and John both had done
a better job of leaving some instructions because I think
(15:21):
that if you can give the gift of clarity to
the ones that you're leaving behind, whether you're ill or not,
if you can just make the arrangements and do that
for your family, it's a huge gift that then will
allow them to be able to focus on on celebrating
celebrating your life rather than having to get caught up
(15:43):
in all the all the emotional decision making of planning
planning a service.
Speaker 1 (15:49):
I'm talking with Rachel Kerschneider on book Spectrum. She's the
author of the book The Widow Chows Read And let's
get into the title this is where it all comes in, Rachel,
when you're her husband, John passed on. Traditionally, women wear
or I guess relatives or the wife wears all black
and the husband wears all black. Many consider that the
(16:09):
again traditional. You wanted to wear red as the main color. Perhaps, however,
looking at that, and as you described in the book,
that may have had more significance than black. Why did
you choose the color red?
Speaker 2 (16:25):
So red signifies it's the color of love, it's the
color of passion. It's also the color of fire, which
the Holy Spirit is represented as a flame during Pentecost
in the Book of Acts in the Bible. And so
all three of those components were so important to me. Also,
you know, I wanted this to be a celebration of
(16:48):
John's life. There were lots of young kids because of
my boys were ten and fourteen. The church was full
of young kids. So I wanted this to be something
of a joyful remembrance of how John lived and what
he gave to the community and what he did with
(17:09):
his life. So not only did he live well, but
he also finished well. So I did have the presence
of mind Chris to videotape the celebration of life service,
my boys Jake and John recited a poem called the Dash.
We also had risk bands made with their dad's name
on it that said live your Dash. And there are
(17:31):
QR codes in the book that can take the reader
to those moments where they can actually see John and
Jake reciting that poem. They can actually watch the service,
they can actually hear stories about John and I will
tell you too, my boys. Because we had the reception
(17:52):
at the church afterwards, I said, okay, boys, everybody's going
to be staying for lunch. What is it that you
want want to serve? Both looked at me and said, Mom,
can we have pizza? So I had over six hundred
pizzas delivered to the church hall so that everybody could
have some have some pizza. But you know, red was
(18:12):
just it was just the color. It was just a
color that really signified everything that I that was important
about my relationship with my husband and how I wanted
I wanted this to be seen as a time of celebration.
Speaker 1 (18:27):
Well, that's something in recent years or decades, I should say.
A trend moving upward is that of the celebration of
life over a funeral or maybe maybe both. Sometimes you
have the funeral and then a celebration of life later on.
The idea is maybe it's not traditional, but it's become
a very I guess it seems to be more comforting
for the family alternative option. What are your thoughts?
Speaker 2 (18:50):
No, I think it's wonderful. I think that it's so important.
We get so wrapped up in how somebody dies, which
of course you know is important, but it's it's it's
more important to remember how they lived, what they're, what
they left, what they brought to this world, and the
legacy that they left behind. And I do believe that, yes,
(19:11):
there has been a tendency, our culture has gotten better
with grief. We're still not great at it. I still
think that, you know, a lot of people are very uncomfortable.
What do I say to someone who's lost a loved one.
I will tell you from my perspective, Please don't be
afraid to bring up their name. This was somebody that
that was important in their life. Please don't think that
(19:34):
by not mentioning them that you're doing them a favor,
because I've found that there are a lot of people
who do want to talk about that person that is
that is no longer here and a celebration of life.
I think, just in capital encapsulates in a in a
much more positive way, the ability to capture what what
(19:58):
that person brought into this world instead of focusing on
maybe how they left it.
Speaker 1 (20:04):
During all of this, Rachel, you wrote about the changing
your faith again without revealing a bit too much, because
again people should get the book The Widow Shows read.
But let's talk about the transformation and both your faith
and overall outlook on life during again, from getting the
diagnosis to during caring for your husband John, and after
(20:27):
the and afterward.
Speaker 2 (20:30):
Well, I will tell you that I grew up in
the Deep South. I had a lot of biblical knowledge.
I could tell you the books of the Bible, I
could quote scripture. I know who God was and Jesus was.
I know a little bit about the Holy Spirit. I
knew he was part of the triune Gods. So that
part of my education was complete. John and I had
(20:52):
both grown up, you know, with a with a religious background.
What changed for me was that I think Jesus just
became much more real to me. I also began to
realize that this supernatural superpower that we've been gifted in
(21:12):
which is the Holy Spirit does reside in us to
help us in those moments of complete overwhelmed disbelief, chaos,
when we just don't when we can't think straight, that's
the time to call on that Holy Spirit that resides
in each one of us. And so for me, I
began to really recognize the reality of having Jesus making
(21:37):
this walk right alongside me. I engaged a faith based counselor.
I walked into her office one day and I said,
I don't understand why I'm exhausted. I don't understand I'm
not eating, I'm not sleeping. Why am I anxious? I
know God is in control. I believe in Jesus. I
have faith. So shouldn't this be easier? This should be
(22:00):
I have faith. And she looked at me and she said, Rachel,
Jesus was a man and he had twelve guys helping
him out. You're not Jesus, but you're not meant to
do this alone. And I think at that moment, Chris
I realized, Wow, she's right. I mean, Jesus didn't need help, right.
(22:23):
He chose those twelve guys to walk alongside him. He
didn't have to have them there but he chose that,
and it just made things crystallized for me that I
could ask for help. I didn't have to do this
by myself. He was going to be with me. He
was going to bring the people, the community, the church
alongside me to help John and I and Jake and
(22:46):
John make this journey and to do it together and
to grow while we were doing it.
Speaker 1 (22:53):
I want to ask you this, Rachel, readjusting to life
after your husband's passing. And I used readjusting because you
were a caretaker for a very long time for John,
and you wanted to spend as much time with the
kids as possible. You had to. Obviously, you talked about
the change in lifestyle and having a care for you
and working a care for your husband and doing that
(23:14):
very well. But you aren't doing that anymore and you're
now forced to move on with life. How difficult was
it to carry on for you? And what drove you to.
Speaker 2 (23:25):
Do so well? Here's here's what happened. I don't think
I really realized while I was going through it exactly
what was happening, which isn't unusual for people who find
themselves in a caregiving role. I didn't think I would
ever sleep through the night again. You know what it's
like when you have a baby. But I was getting up,
(23:48):
you know, several times a night to turn John. I
didn't think I would ever get a normal sleeping pattern
back and took it took a while. What happened for me, Chris,
is that I had these two boys, so I could
not I didn't have the luxury of curling up into
a fetal position and saying, Okay, I can't do this.
(24:09):
I had these two boys, one of them fourteen, who
was just hitting high school adolescence. I had no idea
how he was going to cope with his grief, and
we found out he chose. He chose to go down
the path of experimenting with drugs, which took me down
a whole different path of rehab and all that's associated
(24:30):
with that. My other son, Jake, if it was sports
related and had a ball in it, that's where he was.
So both of these boys chose to handle their grief
in very different ways, And as their mom, I didn't
really have a lot of time to deal with what
I was feeling, because heck, I'm their mom, I'm responsible.
(24:52):
I got to help them walk through this. And so took.
It took. It took a long time for me to actually,
I think, realize how this did affect me, because I
was so busy still taking care of them, and that's
why it took a little while to get this, to
get this story down on paper. But that's one of
(25:13):
the reasons why it was so important for me to
write it, so that others would understand that, you know,
whatever you're going through, however you're getting through it, there
isn't really a right or wrong way to do it,
but you need to be able to just recognize what
is going on and to be able to figure out
(25:35):
a healthy way to deal with it. My Son's Journey
to Rehab that's going to be the second book in
the trilogy, The Boys, The Bible, and the Battle, and
it will highlight what it was like for me to
be a single mom at forty nine with these boys
and helping them make a healthy journey into adulthood, which
(25:59):
you know, for a lot of parents it's a it's
a it's a tough road addiction or not.
Speaker 1 (26:04):
Rachel, we are running out of time, but I do
want to ask you this as as I like to
ask most of the I guess on the program here
book Spenctrum. What would you like your readers to get
most from the book The Widow Shows written.
Speaker 2 (26:16):
I want my readers to get hope, a little bit
of humor, some inspiration. I want to fortify their faith.
I want to remind them of that supernatural superpower that
they hold inside of them. And I want to encourage
them that whatever they may be going through, they are
not alone. And as we know, change happens in our life,
(26:40):
good or bad, so just know that whatever is happening
probably won't won't last forever. God has a God has
a plan for you, even though you may not understand it.
I'd get that, but He's not finished with you yet.
Speaker 1 (26:55):
Rachel Kerschnedder, thank you for being with us here on
book Spendrum. Once again, the book is The Widow Chose
read my Journey with Jesus, John and Als. You can
get that on Amazon or wherever you get your books,
whether it's online or at the bookstore. Rachel, where can
people find ou out? Find out about find out more
about you? You have a website or some social.
Speaker 2 (27:16):
Media absolutely you can connect with me on Facebook, LinkedIn, Instagram, YouTube.
My website is Spirited prosperity dot com. You can also
go to the widowhowsread dot com uh to get more
information as well. So please reach out connect. I'd love
to hear I'd love to hear your story of faith
(27:37):
and resilience as well.
Speaker 1 (27:39):
Thank you very much, Rachel, and thank you for listening
here on book spstrum. I'm Chris Cordani and keep those
pages turning