Sunday was a great day in spite of the constant and persistent rain. It was a day full of food, blessings and friendship. We were visited by Fr. Tim whom I’ve known since ’84 when we met him at CFL. He is also the priest that married Chris and Kim in 2001. He is a full-time hospital Chaplain at a Burlington hospital and his ministry is to the sick and dieing, and their families.

We had a leisurely morning getting up and getting ready for his visit. He showed up about 1 pm. After a “snack” of cheeses and meats, Leslie and Bob decided to light a fire in the fire place; yes, a fire in June to keep us warm. Then with the mood of the fire, we celebrated mass with Fr. Tim. It was a very holy time with just he, myself, Julie and Bob and Leslie. A special gift was the anointing and blessing that Fr. Tim gave me during the home mass. I was showered with peace, contentment and a Holy Presence. After mass, we feasted on a great steak dinner and finished the evening with a few hours of Mexican Train dominoes. The rain continued all day with barely a break but we had a wonderful day.

Monday was a day of go, go, go. After the morning routine of getting me ready and eating a little breakfast, Leslie and I went for about a 2-mile ride on the bike trail in my Caddi with Leslie rushing to keep up; this time heading towards Stowe. The four of us then headed back into Burlington for more of the Jazz Festival. This time we did not have tickets for any of the shows but just enjoyed the events around town. We got a great parking place right next to Church St. where the free concerts were held. We listened to some HS jazz bands, walked around town and down near the water, and listened to the professional entertainment in the evening at the two outdoor stages on Church St. We were honored again with Fr. Tim’s presence for dinner. The enlightenment was coming to recognize that jazz can exist in so many forms.

It has been a treat for me to live in community this week with Leslie, and Julie and Bob and seeing the special bond form between them. It just seems that we’ve all been friends forever.

We started the morning with a refreshing wheel chair ride on the bike path. Stowe has a beautiful path made just for bikes which goes from the town to the base of the ski mountain. It is amazing and winds through the wooded areas and crosses the small river numerous times. The real challenge was “could I operate the Caddi-wheel chair for a long distance?” Amazingly, I only needed assistance twice. So the new attendant wheel chair controls have been officially inaugurated and Leslie and Bob passed the use-test with flying colors. The slow babbling and rushing water flow was calming and peaceful making the ride intoxicating and fun. The fragrances of the lilacs and wildflowers stimulated our senses and the visuals of corn fields and bridges were charming. I felt like a kid wheeling through the water puddles (it rained int he morning) splashing with delight. we rode about a mile out for a 2-mi round trip excursion.

After about an hour drive to Burlington, we drove down Main St. to discover that the Jazz festival was alive everywhere. Music flowed from buildings, open air squares and the park. We were blessed to have front row tickets to the Allan Toussaint concert. He is a piano player, composer, entertainer and singer that played for an hour and 45 mins and it was absolutely exhilarating. He is probably best known for writing the song “Mother-in-Law” which was popular in ’61. Recently he has started emphasizing jazz but still played some of the older rock-type music. Even Bob stayed awake for it (not so of the first group, all jazz). And, I was making my Caddi-chair rock with the rhythm of Toussaint’s music.

Even though I am wheelchair bound God has opened the doors for me to travel to Vermont for a week. How did all this come about? One day I was asked by dear friends, Bob and Julie, “Where would you like to spend a week?” Vermont is where my best friend from college, Leslie, and I would ski while living in New York City, so what better place to spend a week with Leslie than Stowe, Vermont!

There are challenges to traveling with a wheelchair. The list of needed equipment is extensive, for me it was two pages long and generated over a four day period. Beginning with my caregiver, Gloria’s efficient packing and ending with Bob’s spacial skills of jam-packing the van we were ready to go on our 12 hour trip on Thursday afternoon. Upon the suggestion of our foster-daughter, Sue Ann, I attempted to ride in the van facing the rear in the front passenger’s side, this allowed me to extend my legs and recline providing a very comfortable 10 hour journey for me the first day.

After the 10 hour drive we stopped at a handicap accessible hotel. In locating this hotel we discovered the term “handicap accessible” is not a universal term. We need to specifically request a bed that allowed the hoyer lift to slide underneath. When we arrived we found the bed to be slightly less than the 6″ clearance needed. Bob’s ingenuity again prevailed and he collected 4 telephone books to use as bed elevators and voila! access to the bed was made via the hoyer lift. The irony of this handicap accessible room is that the lower mattress did not make care giving easier or hoyer lift use easier, unlike a regular height mattress. My needs would have been better served if we didn’t use the handicap room. But who knew! Ultimately, the can-do attitude is one of the most important attitudes in traveling with companions who are wheelchair bound.

Recently I had a fun day experiencing the affection and companionship of two lovely alpacas. My friend Marilyn arranged the day with Kathy and Giovanni at DolceVita Alpacas farm located near my home. Dozier (12 months) and Casanova (6 months) came to visit my home. They were well behaved gentlemen and enjoyed giving and receiving affection. We spent time gazing into each other’s eyes laughing and snuggling. Pet therapy is such a healing and life-giving ministry. Kathy and Giovanni are joy-filled and proud parents of their four-footed pets. These animals are mild-tempered, gregarious and inquisitive creatures. I shared the day with the children from weekly story hour. If you’d like to take your children to a fun-filled farm, Google DolceVita.

I recently attended my ALS clinic at UVA. This clinic visit generally takes 4-5 hours. I am so appreciative of my angels who transport me to the clinic.

During my clinic visits that occur every 3-4 months I see the neurologist, speech therapist, occupational therapist, physical therapist, nutritionist, ALS representative, palliative care physician, computer tech, and respiratory therapist. During this visit I was determined to ask several of these health care providers very direct questions about my current condition and prognosis. These are people who have become very involved in my life and medical condition and I have developed personal relationships with most of them. I feel blessed to be considered their star pupil.

As you aware this disease has completely paralyzed my body. Unlike a quadriplegic who is completely unable to physical feel any sensation, I have total feeling throughout my body yet I am unable to move anything except my head.

We all know that ALS has a terminal prognosis and so I asked my doctor directly what aspect of the ALS will be the cause of my death. He was able to answer me by saying the ALS will cause my lungs to slowly shutdown. My symptoms will be a gradual fatigue that will lead me to eat and drink less causing more fatigue. I was assured I would not experience gasping or shortness of breath but rather would just fall asleep. These words were very comforting to me. I asked him from his experience of ALS what he thought would be the amount of time that would elapse before I would fall asleep. You guessed it…….I got a general answer……1 year give or take 6 months. He assured me I would see him again at my 4 month checkup.

The respiratory therapist informed me that my lung function has declined from 60% in September to 30% currently. Although that seems like a low percentage I am still able to breath comfortably without assistance.

The speech therapist assured me that I will most likely retain my ability to continue to talk. This was the most comforting news of the day to know I will be able to communicate up until the end. So I guess I still get to have the last word.

In conclusion, ALS may rob my independence but it will never take away my sense of humor, my thought process,or my ability to love and pray.

Wow, God is so good! He provides so many opportunities to trust.

One of my recent hurtles is depending on others to eat because of the new paralysis in my right arm. It would be easy to stop all social engagements including those that are centered around a meal. What is it that keeps me open to continue to dine out and attend social events? A natural inclination would be to withdraw.

Recently at a church dinner I was seated and presented with a plate of food. Within minutes God sent one of His angels by the name of Ed who graciously pulled up a chair, recognized my need, and provided a comfortable setting for me to eat a magnificent, home cooked Italian dinner.

In another venue, I was taking to Paneras for breakfast and Jim graciously cut my bagel in bit-sized pieces and provided the hands for me to enjoy my creamcheese and bagel.
At a recent birthday party, Chris transparently sat nearby to be sure I was able to enjoy the meal and the social event to its fullest.

In conclusion, God provides angels when least expected especially during those potentially uncomfortable times. And so it is a process of trust to know that life continues with all the changes of ALS. It’s a two-way street. I have to allow others to be the hands and feet of Jesus for me in my daily life.

Who would think with ALS changes would be continually occurring. For me ALS has been a slow progressive disease, but yet changes can occur daily. Specifically, recently it has been the loss of strength in my right arm and hand. And this has led to many new challenges. One important one is continuing to be able to drive my Cadillac wheelchair. Because of loss of strength, it is cumbersome to push the joystick and to use the control panel that adjusts the wheelchair. Another adaptation to the loss has been trying to remain independent drinking and eating. Solution for the drinking problem has been a two foot hummingbird straw that reaches from the drinking cup to my mouth. Solution to eating independently has been resorting to finger food. These solutions occur because of creative people like our son, Chris who helps me to problem solve and think ‘outside the box’ to come to workable solutions.

My wheelchair takes on a new look each day as Sueann makes changes to accommodate my new needs. An example of this might be pieces of velcro secured to my armrest so my elbow doesn’t continually slip off the chair.

In conclusion each day is a new day with new challenges and with the assistance of creative people in my life, life never becomes boring.

God is so good and showers so many blessing upon me each day. Yesterday was a special day with lots of surprises to celebrate my birthday. Our prayer group which usually meets Monday evenings joined with several people from St. Johns for Mass and dinner in the living room.

Fr. Cozzi led us in the Eucharistic Celebration. As part of our Mass, I was privileged to receive the anointing for the sick. Sharing Mass in my home and receiving the Sacrament of the Sick surrounded by friends and family was a very special moment in my life.
If you can image the scene with the entrance of 20 people parading in with food and drink and flowers, then setting up the living room with grace and precision to prepare for Mass. All of this was a total surprise for me!
I felt humbled and joy filled and tears rolled down my cheeks as I watched my faith community work together to make this a special day for me.

As part of the celebration, we enjoyed jumbalaya and salad, fruit, garlic bread and of course, cake and ice cream. The anticipation and delight of the children when I asked them to blow out the numerous candles on the birthday cake was awesome! (This is something I am unable to do at this stage of ALS progression).

This is my first birthday without Bernie, but he was certainly present throughout the day in big and small ways! Bernie often bought me a dozen red roses and of course, there were red roses at my party. Bernie believed in the importance of anointing the sick before their last breath, so I know he was present to make this happen for me on my birthday. And Bernie was always present when there was good food and drink!

Words cannot express the gratitude I have for my church community to make this a special day full of memories that I will hold close to my heart.

Several months ago I was asked if I would consider a half hour prayer session each week with friends for the purpose of praying for my intentions. I was pleased with this idea, but had no expectations. I knew in my heart I was transitioning from living with my best friend of 45 years to living alone. I knew prayer was essential to help me walk this ongoing journey. As with all prayer, it’s important to reflect and envision how are prayers are answered. In recent weeks I’ve been surrounded by a peaceful aura that envelops me totally. As I said I had no expectation for this weekly silent prayer gathering, but what has evolved is a peace that surpasses all understanding. And it was at last night’s prayer session that I was able to share with the group the positive results of our weekly gathering.

I was asked how I maintain such a peaceful demeaner. I found this question comfirmation of the graces and blessings I am receiving from our weekly prayer gather. This peacefullness is a vehicle for me to continue this journey without Bernie’s physical presence. I am still not able to put my hands around the spiritual process, but I do know that prayers are being answered specifically when I ask the Lord each morning to make me a vehicle of His service and peace with the qualification of showing me how to do it!