I’m posting this update on Phyl (and me too) to my blog page because I have a feeling it is going to be a long one and it will be easier to read this way.  This also lets me include a few photos.  Only those folks with the password will be able to see this post.

John

It is the end of July and we are doing pretty well in spite of the challenges – and perhaps because of the blessings associated with ALS.  Yes… there are blessings.  The last time I wrote it was shortly after the Walk-a-thon fundraiser, where Phyl was the second highest fundraiser for the second year in a row (the top guy “went corporate” and got big donations – Phyl only went to family and friends)!  She felt pretty good about this!  Thanks to everyone who donated and/or walked with us!

Since then we have kept things pretty simple and established a daily routine of care, broken up by a few wonderful weekends with family visits.  To give you a sense of what its like at 123 Harlow Dr. here is an outline of a typical day.

I get up early and get my own breakfast, read the newspaper (mostly about the Red Sox), check in on my online classes (it helps pay the bills), and then sometime around 9:00am I hear a bell calling me (Phyl has a button she presses) and our day together begins.

We start with a bathroom visit, which is no longer easy as it requires a transfer to her power wheelchair and back again.  Some days there is a shower and thank goodness she can roll in using a specially designed shower chair.  She gets “stretched” on the bed to keep her muscles from tightening up.  I help her get dressed and we fight over what she will have for breakfast.  She has never been a big breakfast eater, but if we don’t get enough food in her she will continue to lose weight (this is a real problem as it makes the muscles she has working even weaker).  She will often have breakfast on our deck and read the paper… and then the fun begins.

Almost every day Phyl has some activity planned with friends.  They may go shopping, to the movies, or take her power wheelchair on an accessible nature walk.  Her friends may also be recruited to do some gardening (under Phyl’s direction, they will weed and water… and sometimes plant new flowers).  Phyl loves her gardens and they look great thanks to the gardening volunteers.  If she is not going out to lunch with a friend, we fight over lunch!  We’ve gone to a liquid meal substitute lately which can be fed through her feeding tube directly into her stomach.  Since she is rarely hungry in the middle of the day, this helps to get her calories and protein.  She had her feeding tube (which dangled for 14 inches hanging out of her stomach) replaced with a small button which is low-profile and much less of an aggravation.  It requires a bit of special care to keep clean but is worth it.  This lets me give her medications and extra nutrition.

On days when there is nothing special planned, we will often sit on the back deck and read together.  She and a friend might take Riley for a walk, either around the neighborhood in her power chair or in her golf cart in the fields near our house.  I will work on dinner and either serve her on the deck or perhaps in front of the TV if the Red Sox game is on.  She says I”m getting to be a good cook.  I’m learning but don’t feel very accomplished yet!  I am kind of enjoying the planning, shopping and cooking dinner since I”m not really working much now.  In the Fall when I go back to work, the Meal Train organized by friends kicks in again and her network of friends will be delivering dinner two nights a week.  This really helps!

The evenings are generally the Red Sox and a mini-series.  Lately we have been watching McLeod’s Daughters which is about a cattle ranch in Australia run by a bunch of women.  The good news is there were 8 seasons with 30+ episodes each.  The bad news is that we are on Season 8.  It keeps us occupied.  Getting Phyl ready for bed is a complicated set of tasks that takes a while between the meds, bathroom dance, etc.  She sleeps well all night with a respirator helping her to breathe evenly.   It took us a while to work out the right respirator mask but we are doing well with it now.

I knew this would be a longish post…..

I asked Phyl this morning what she wanted me to tell you.  The first thing that came to mind (because it is fresh in her mind) is that she has accepted being in the power wheelchair almost all day.  In the past, we could transfer her from her mobility scooter (which she loved and had more of a motorcycle feel than a handicap chair feel) to a chair at the table to eat, the couch, and to the van.  She is having difficulty holding herself up in a seated position and her legs are weak now so the power chair is getting a lot of use.  Once I get her into the wheelchair she can zip around the house, go out on the deck, or around the block with friends.  We recently got it set up so she can drive her chair right into the van and it locks in place while we travel.  This is both upsetting, because it is yet one more example of the progressive nature of the disease, as well as satisfying because she can go places and still be comfortable in her chair.  Everything we do seems to have both a challenge and a blessing.

Of course the disease continues to take things from her.  Each week there is something new that she notices she can’t do that she could do in the recent past.  So we adjust and accommodate.  The feelings are mixed between sadness for what she has lost and gratitude for what we are able to do.  Many people with ALS do not have the resources to do the things we can.  Not all caregivers have as much flexibility in their work as I do with summers off.  So we have a lot to be grateful for.

Speaking of work…. I told my department that I would retire next May.  I need to be home and available for Phyl even though we also have aides coming into the house to help out.  I’ll teach one class on campus in the fall and maybe one in the spring.  Phyl has organized her friends to be with her while I’m teaching on Tuesday and Thursday afternoons.  If you are local and want to sign up, check out Lotsa Helping Hands: https://my.lotsahelpinghands.com/community/phyls-helpers/home

As I said, this disease comes with challenges and blessings.  The greatest blessing for Phyl has been the incredible network of friends who have shown up.  Some garden, others go for lunch, and some just stop by to say hello on a regular basis.  Folks who are not local call regularly to check in and chat.  I told her recently that if we had to rely on my network of friends… we’d starve.  She on the other hand has friends from high school, college, our Illinois days, and of course locally that continue to amaze us with their generosity (of time) and their love.

I’ve really got to end this soon….

Yesterday, my Facebook page popped up this picture from a bicycle trip we took in Colorado, 6 years ago.

We were really proud of ourselves that day!  It was an optional part of a 5 day bike trip in the mountains in which we biked over a pass that most of the other folks decided to skip.  Biking at 9000 feet was not easy but we were in great shape!  We trained for this trip to celebrate our 40th wedding anniversary.  Phyl was always up for a physical challenge (and I always struggled to keep up with her).

Today is no different.  She now struggles with a physical challenge of a different sort.  I am amazed each day how she gets up and pushes herself through the day.  Sometimes the effort results in complete exhaustion.  I can always tell because she gets really “heavy” on these days as I help transfer her from the chair to the toilet or bed.  In the morning, her legs have some ability to help but by the end of the day, there is nothing left.  And I won’t lie to you… sometimes there are tears.  But the truth is that there are more smiles than tears.

We have no idea what the future will bring.  She is on three experimental drugs and we will continue to have hope that a stem cell treatment will be approved that might stop the progression before her breathing becomes critical.  But we know that ALS is a terminal disease.  I feel fortunate that the progression has been slow.  I’m told that 70% of the people diagnosed with this disease about the same time as Phyl have died.  Perhaps the experimental drugs are making a difference.  We just don’t know.

For now, we try to live one day at a time.  And most days are pretty damn good – hard but good.  And the best days are surely when Phyl gets to be with our grandchildren (three in the picture below and another due in November)!  We are blessed to have all three sons and their families in New England.  They visit us as often as they can, since it is not easy for us to travel.  In fact, we hope to see them all in a few weeks as we have a house rented in Rhode Island near the beach again.  The public beaches have these cool beach wheel chairs that can go right into the water and she will have our strong sons to help her get in and out!

I hope this paints a picture of what’s going on at 123 Harlow Dr.  I know it isn’t easy to hear this stuff – but Phyl wants you to know – both the good and the bad.  As always, she won’t look at my post to you but she knows I sent it.  Please do continue to call and visit.  She is willing to answer any questions about her condition so please don’t be afraid to ask.  It actually helps her to talk about it but remember that some days she has difficulty talking due to lack of breath, so if you sense she is struggling please ask if she wants to continue.   But do call as she needs to hear from you!

We laugh about this often…. our plan is to “just keep swimming”

Quotes on the power of stories…. from:

If Women Rose Rooted

By Blackie, Sharon

Reclaiming Our Stories

The stories we tell about the creation of the Earth and the origins of humankind show us how our culture views the world, our place in it, and our relationships with the other living things which inhabit it.

 To change the world, we… need first to change ourselves – and then we need to change the stories we tell about who we are. The stories we’ve been living by for the past few centuries – the stories of male superiority, of progress and growth and domination – don’t serve women and they certainly don’t serve the planet. Stories matter, you see.

They’re not just entertainment – stories matter because humans are narrative creatures. It’s not simply that we like to tell stories, and to listen to them: it’s that narrative is hard – wired into us. It’s a function of our biology, and the way our brains have evolved over time. We make sense of the world and fashion our identities through the sharing and passing on of stories. And so the stories that we tell ourselves about the world and our place in it, and the stories that are told to us by others about the world and our place in it, shape not just our own lives, but the world around us.

As I wrestle with life, I find that reading from many sources of inspiration from Harry Potter and Alice in Wonderland, to the Tibetan Book of the Dead and the Tao Te Ching, to the Hebrew and Christian Bibles, helps me to begin to make sense of my experiences.  I had rejected some of the more traditional sources of inspiration earlier in my life, having been indoctrinated by priests and nuns with a literal reading of these age-old books of wisdom.   More recently I’ve come to value some of the stories in the Hebrew and Christian Bibles.  The excerpt below is from one of my favorite Catholic writers, Ronald Rolheiser, and refers to a quote we are not meant to take literally.

Father Rolheiser and other progressive Christian authors seem to understand that just as Yeshua of Nazareth taught with parables, so did his followers in the writing of the Christian gospels.  The stories which I was told I must understand literally (and therefore rejected), are loaded with metaphors which can be useful in helping us reflect upon and learn from our own life experiences.  The following excerpt from Rolheiser is a reflection on the seemingly rather harsh gospel quote…

If any want to become my followers, let them deny themselves and take up their cross daily and follow me. For those who want to save their life will lose it, and those who lose their life for my sake will save it” (Luke 9:23–24).

I doubt the gospel writers are really telling us that we need to carry a cross about to be saved.  But as a metaphor, it might have a deep meaning for those of us who have suffered (I guess that means all of us).  Rolheiser writes….

I suspect that each of us has a gut-sense of what this means… but I suspect too that many of us misunderstand what Jesus is asking here and struggle unhealthily with this invitation. What, concretely, does Jesus mean by this?

To answer that, I would like to lean on some insights offered by James Martin in his book Jesus: A Pilgrimage. He suggests that taking up our cross daily and giving up life in order to find deeper life means six interpenetrating things:

First, it means accepting that suffering is a part of our lives. Accepting our cross and giving up our lives means that, at some point, we have to make peace with the unalterable fact that frustration, disappointment, pain, misfortune, illness, unfairness, sadness, and death are a part of our lives and they must ultimately be accepted without bitterness. As long as we nurse the notion that pain in our lives is something we need not accept, we will habitually find ourselves bitter—bitter for not having accepted the cross.

Second, taking up our cross and giving up our lives means that we may not, in our suffering, pass on any bitterness to those around us. We have a strong inclination, almost as part of our natural instincts, to make others suffer when we are suffering: “If I’m unhappy, I will make sure that others around me are unhappy too!” This does not mean, as Martin points out, that we cannot share our pain with others. But there’s a healthy way of doing this, where our sharing leaves others free, as opposed to an unhealthy kind of sharing that subtly tries to make others unhappy because we are unhappy. There’s a difference between healthily groaning under the weight of our pain and unhealthily whining in self-pity and bitterness under that weight. The cross gives us permission to do the former, but not the latter. Jesus groaned under the weight of his cross, but no self-pity, whining, or bitterness issued forth from his lips or his beaten body.

Third, walking in the footsteps of Jesus as he carries his cross means that we must accept some other deaths before our physical death, that we are invited to let some parts of ourselves die. When Jesus invites us to die in order to find life, he is not, first of all, talking about physical death. If we live in adulthood, there are a myriad of other deaths that we must undergo before we die physically. Maturity and discipleship are about perennially naming our deaths, claiming our births, mourning our losses, letting go of what’s died, and receiving new spirit for the new life that we are now living. These are the stages of growing up. There are small deaths in our lives…. daily.

Fourth, it means that we must wait for the resurrection, that here in this life all symphonies must remain unfinished. So much of life and discipleship is about waiting—waiting in frustration, inside injustice, inside pain, in longing, battling bitterness—as we wait for something or someone to come and change our situation. We spend about 98 percent of our lives waiting for fulfillment, in small and big ways. Jesus’s invitation to us to follow him implies waiting and accepting the truth that we live inside an unfinished symphony.

Fifth, carrying our cross daily means accepting that God’s gift to us is often not what we expect. God always answers our prayers but, oftentimes, by giving us what we really need rather than what we think we need. Resurrection, says James Martin, does not come when we expect it and rarely fits our notion of how a resurrection should happen. To carry your cross is to be open to surprise.

Finally, taking up your cross and being willing to give up your life means living in a faith that believes that nothing is impossible for God. As James Martin puts it, this means accepting that God is greater than the human imagination. Indeed, whenever we succumb to the notion that God cannot offer us a way out of our pain into some kind of newness, it’s precisely because we have reduced God down to the size of our own limited imagination. It’s possible to accept our cross, to live in trust, and to not grow bitter inside pain only if we believe in possibilities beyond what we can imagine; namely, if we believe in the resurrection.

FROM: Rolheiser, Ronald. The Passion and the Cross (pp. 64-67). Franciscan Media. Kindle Edition.

I find a lot of value in Rolheiser’s interpretation of the gospel quote.  Perhaps you’d share your own thoughts in the comments box below?

It was on March 15 (the Ides of March) 2017 when our world began to shrink.  My wife and I left the neurologist’s office in Springfield, MA after the diagnosis and were sitting in the car outside when the process of withdrawal and isolation began.  “I suspect you have Lou Gehrig’s Disease” he had stated gently, leaving open the possibility that he might be wrong – a possibility we clung to for a few weeks – but he was not wrong.  The diagnosis of ALS marked the beginning of a journey in which the pace of our lives slowed down and became more isolated from those of you who are still living what we call “normal” lives.  In spite of the love of family members and the incredible support of friends and local community, the person with a terminal illness feels so very alone – some of the time.

The following excerpt is from a book by K. D. Singh titled The Grace in Dying.  It describes the feelings expressed by my wife, who has ALS, in words far more eloquent and accurate than either of us could write.  It is shared because she wants you to know how it feels….

Continue reading The Withdrawal and Isolation of the Terminally Ill →

Pope Francis has become something of a sustainability superhero today, finding his picture on the front covers of Rolling Stone, The New Yorker, and TIME magazine. He has been an outspoken critic of the dominance of the human desire for short term financial success at the expense of the other two sustainability goals of social justice and environmental quality. But I have to wonder if we are not expecting too much from just one man. If we are to realize positive change and a more sustainable world, this Pope needs our help.

Pope Francis surely deserves praise as he has courageously used his bully pulpit to challenge his own management team, the Roman Curia, to examine their collective Continue reading Catholic Church “sustainability superhero” needs our help →