I’m Still Here!

Hello friends – I’m back! It has been such a long time since I’ve written and I have missed the connection. I was almost ready to archive my blog but recent events have given me the jolt of energy I needed to resume my daily writing.

What have I been doing? Well, here’s a brief summary to catch up you to speed.

Like so many others, I struggled the past few years. The COVID pandemic has been a challenge, particularly the early days. Even though I have been fortunate to avoid sickness and infection so far, it has been difficult to watch the devastation on my disabled peers and their lives.

I finally admitted to my own mental health issues and depression which have been growing, and this caused me to reprioritize certain activities. I am on medicine, but I continue to struggle to find a therapist to help me further heal and recover. I do not want to have to help a clinician unpack their own internalized ableism while they are supposed to be helping me with my past trauma.

Almost a year ago, my family helped my mother transition from this life to eternal rest. She passed away peacefully on the day that would have been my father’s 95th birthday. I am grateful to everyone who sacrificed to allow her to spend her last days at home. Although it was sad to say goodbye for now, it was wonderful to gather with friends and family to celebrate her legacy. Mom was known for her hospitality and kindness to all. The world would be a better place if we accepted each other without judgement, but rather with compassion and love as she did.

I changed jobs in 2022, and then again this past September. While I love advocating for home care for people with disabilities, my strength is not in the realm of care coordination or social work. Medicaid home care remains in crisis but my own mental health issues meant I was burning out as a peer advocate. Fortunately, a position opened up which provided an opportunity for me to return to public health work. I spent just over a year working in a state program focused on building a more accessible and inclusive public health infrastructure and increasing health outcomes for people with disabilities. I enjoyed the challenge, but never felt like it was the place I was meant to be.

Then, an opportunity presented itself and I couldn’t resist taking a chance. Three months ago I became the new Executive Director of the New York State Independent Living Council. The work is challenging, but it feels purposeful. I have a great staff to work with and amazing Council Members who are committed to independent living for people with disabilities. Most days I feel like I’m playing catch up and still trying to figure out what I’m really doing, but at the end of the day I am grateful to have the chance to make system change happen on a larger scale.

I remain involved with Rotary at both the club and district level. I served as District Governor for the greater Capital Region of New York (Rotary District 7190) from July 2022-June 2023. It was an honor to serve and support the clubs in my district as they resumed in-person meetings and events. If you are familiar with my writing here, you are aware of my history with Rotary and my prior travels as a Rotary youth exchange student.

The highlight of this year was a return trip to Australia in May. This time I was able to bring my bestest best friend Stephanie with me and we had an AMAZING adventure. There are many future blog posts to come about that, so please stay tuned. During our trip, we visited my former host families and Rotary hosts, and participated in the Rotary International Convention. We ended our two-week tour with a brief stay in Sydney where we were wined and dined by my best friend from Australia, Ulla.

Stephanie, Ulla and I enjoying a glass of wine at the Sydney Opera House.

I’m looking forward to getting back into blogging and sharing my writing. Thank you for taking the time to reconnect. I hope you will come back in 2024 as I get back into DeeScribes!

My Go-To Tunes: Musical Memories

Sometimes, I’m going through life doing something completely mundane when all of a sudden my brain becomes aware of a song and I’m instantly transported to a different place and time. This happened yesterday as I was completing an overdue monthly expense report for my employer. I heard the high hat and the keyboards and started bopping in my chair. In came the bass, and I turned up the volume on my headphones without even realizing what I was doing. I started singing the first chorus before I became aware of the sound coming out of my mouth.

Sidebar – this happens all the time, much to the annoyance of my former cubicle neighbors when I used to work in the cube farm. “I’m sure you think you have a lovely voice, but it’s very distracting when you sing at your desk.” Um, well, I actually do have a good voice, but most of the time when I’m singing at my desk at work, I really don’t notice that I’m doing it. I’ll try not to listen to music but you screaming into  your phone is a distraction too! Is it any wonder I didn’t last there?

Back to the story…

When this happened yesterday, I was transported from my home office in Waterford, New York, USA, to the house on Mirramar Park in Blackmans Bay, Tasmania, Australia. I was sixteen years old in September 1990 when my host brother, Mike, blared the song at 6:45 AM and yelled at me to get out of bed. I remember the moment because it was one of the few mornings I did not get up before Mike to get ready for school.

This memory sparked another memory – February 15 is Mike’s birthday! A glance at the clock and some quick calculations and I realized it was already February 15 in Australia. I left a quick note on Mike’s Facebook page, sharing my musical memories and birthday wishes. He replied this morning (well, morning for me but I’m guessing he’s heading to bed).

Denise – You are AWESOME! I still absolutely love that song!!! i will play it tomorrow to my 3 daughters in your honour! I love how the bass line kicks in half way through the bar on the off beat…gold!

I love that music can be a universal language, connecting me to friends and family who happen to be on the other side of the world. Some people associate memories with food or scents. I know someone whose memories are triggered by clothes. But my memories have always been sparked by music.

The song that served as my memory spark this time was Modern Times by Daryl Braithwaite. Included on his album Rise, it is a staple on my “Aussie Tunes” playlist. I’ve listened to it hundreds of times, but yesterday I was struck by the second verse. Though the song was released twenty-seven years ago, the lyrics are still relevant.

Somebody pulls the trigger, while somebody waits to get hit

Somebody freezes in the winter, and I’m complaining about the heat

Nobody listens these days, though they’ve all got something to say

I’m singing songs about waiting, and you’ll come back some day

Now I need to go listen to the song again. You can listen to it too, in honor of Mike’s birthday.

30 Days of Thanks Day 8 – James

Twenty five years ago the night before I left my hometown for Australia to complete my year as an exchange student, I received the best advice from a family friend. As he gave me a hug, he encouraged me to make the most of the opportunities on my upcoming journey.

Whatever you are asked to do, any invitation you receive – say yes. Do it all. You never know if you’ll get another chance.

I have tried to live by that motto as much as possible. Saying yes has brought me challenges, but it has also afforded me opportunities I never could have imagined.

Last June, I received an invitation to return to Tasmania. The invitation came in an email from James, a Tasmanian Rotarian I met as an exchange student.

Would you be interested and able to be a speaker at the Tasmanian District Conference from 22 – 22 March 2015?

YES!!! I didn’t even have to think for a fraction of a second about that one. In fact, I didn’t take a moment to think. I typed back an affirmative response right away, screaming and shouting as I whipped through my apartment in glee.

Only after five minutes of yelling did I realize what I had done. I meant YES with every fiber of my being, but making the trip a reality would take months of planning and work. I sent another more rational email to James explaining how I would need to do more planning before giving a definitive answer. James’ reply was brief and all the encouragement I needed:

Great things don’t just happen = people make them happen, so keep planning.

I printed out the note, highlighted it in bright yellow and pasted it above my computer screen. I knew I had the ability to make this happen, and so did James because twenty-five years ago he was involved in another adventure of mine which required planning to happen.

One of the highlights of my year as an exchange student was the Capricorn Ramble. This trip took me and eighty-four other exchange students around half of the continent of Australia in three and a half weeks. That’s right – two tour buses of teenagers from around the world traveling across the continent for twenty-four days, pitching tents each night in caravan parks and campgrounds.

Sounds brilliant, no?! When you are seventeen, it IS a brilliant experience.

I almost didn’t get to participate in the adventure. The Rotarians on the Youth Exchange Committee in Tasmania expressed doubts about my ability to ‘manage’ and participate in the tour because of my disability. Their intentions were well-meant, but I perceived this attitude as paternalistic and discriminatory. My fellow exchange students rallied around me, devising a plan to assist me and threatening to boycott the trip if I were not permitted to go with them. Their acceptance and support allowed me to fully experience the entire year, including the mainland trip, along with everyone else.

Trips like our Capricorn Ramble are only possible because Rotarian gluttons for punishment volunteers serve as chaperones. The Tasmanian chaperones for our trip were James and his wife Kathy.

From the first day, James and Kathy allowed me to be in control of my own needs. They allowed me to find my own assistants and schedule help as I saw fit. They never hovered or spoke out with unnecessary concern. Basically, they treated me just like every other exchange student – which was what I wanted and deserved.

At the end of the tour, I thanked both James and Kathy for giving me the independence to determine for myself what was possible and not possible. Some chaperones may have treated me as ‘ill’ or ‘fragile.’ Instead, they let me set my own path and find a way to make it happen.

So, when James issued the invitation to return to Tasmania I was confident he knew I would be up to the challenge to make it a reality. Once again his belief in my abilities provided a boost of confidence.

James, I am so grateful for the invitation to return to Tasmania. You allowed me to share my story of living without limits with the men and women who changed my life when they said “yes” to me twenty-five years ago. I appreciate your support in making the trip a reality. I promise, when you and Kathy come to New York (and I hope you will) I won’t make you stay in tents when I play tour guide.

 

 

30 Days of Thanks Day 6 – Bill

I was introduced to Bill Brundle on the radio. His voice came on the Australian Broadcast Corporation (ABC) newscast every hour. I first heard him while my host parents were driving me to tour the school I would be attending as an exchange student.

It took me several weeks before I realized the Bill on ABC was the same Bill I saw each week at Rotary meetings. Hannah, the other exchange student also hosted by my host club, Kingston Rotary, was living with the Brundles. Bill answered the phone when I called to invite her to a party. I think I blurted out something like, “You’re the radio guy!” He laughed, thank goodness. He may not remember that call, but I do.

Bill and his wife Lyn invited me to their house while Hannah was still living with them. Hannah had talked about her host siblings Samantha, David and Solomon every time we were together. We had a wonderful dinner with plenty of conversation. I think Lyn was worried it may have been a little noisy, but coming from a large family myself I thought it was just like home.

Bill also gave me the opportunity to tour the ABC studio. At that time, I thought I might pursue a career in broadcast journalism. I had the chance to ask questions and observe a broadcast. It was a wonderful learning experience.

Because of Bill, I have remained connected to “my club” for the past twenty five years. Bill is the editor of the Kingston Rotary weekly bulletin. Each Friday morning, I wake up to an email from Bill with the latest update from the Club’s weekly meeting. I read about their fundraising efforts, their service projects, new members, their current exchange students and guest speakers. Sometimes the bulletins include updates from other former exchange students. I’ve never met them, but I feel a bond knowing we all had the privilege of being hosted by this amazing group.

Bill has been a dedicated and active Rotarian for several decades. He served as Team Leader on a Group Study Exchange to areas of the United States in 1997 and was District Governor for the Tasmanian District (9830) in 1999.

When the Kingston club agreed to host me, they made an arrangement of reciprocity with my home club in Bainbridge, New York. Since Kingston accepted me, as student with a disability, Bainbridge agreed to host an Australian exchange student with a disability.  Bill’s daughter Samantha was born with a rare congenital heart defect. Meeting me and observing my experience planted a seed in her head which would forever tie me to Bill and his family.

In 1995, Samantha came to New York on exchange. She lived with my parents for part of her year. During that time, she participated in many of my family dinners, just as I had as a guest with her family five years prior. My father, who is named Sam, was thrilled to have another “Sam” in the house. He still mentions his admiration for Samantha’s zest for life whenever we reminisce about that year.

Like my exchange experience, Samantha’s year would steer her in a course never imagined.  Upon returning to Australia, she followed her love of photography – a passion developed here in an art class. She went on to work for Club Med before marrying the love of her life and settling in Sydney.  Bill and Lyn were told at birth she would live just a few years. Again like me, she refused to conform to medical providers’ expectations and lived for decades until her death nine years ago.

As soon as I received the invitation to return to Tasmania, I emailed Bill and other Rotarians in Kingston. If I said yes, would they help me once again? Bill’s response came first – an enthusiastic yes!

In March, the day after I landed in Tasmania, Bill and Lyn were the first to arrive for a visit at my host parents’ house. Lyn was flying to Qatar to visit their grandchildren but she made time for coffee with me. I saw Bill again the following week when I was the guest speaker at Rotary. After my speech, we posed for a photo. I posed for many photos that night and each one is special to me. But the photo with Bill is one of my favorites. It captures the love and affection between friends in a natural embrace. I have it framed with other photos from my trip and look at each day with a smile.

Bill, I have always appreciated your support and belief in my abilities. On behalf of my parents and sisters, thank you for letting my family have your daughter as part of our family for a short time. Samantha taught all of us to live each day as fully as possible. She learned to reach for the stars from the lessons you and Lyn taught her. I will always be grateful for our shared connection. Thank you Bill (and Lyn!) for helping to make this return trip possible. As you know, there are many in New York who would welcome you with open arms should you come for a visit!

 

30 Days of Thanks Day 1 – Kelly

As soon as I received the invitation to speak in Australia, I began to think about who could accompany me on the trip. I would need someone able to physically perform the duties required of my Personal Assistants. I would also need someone who was available to take a two week trip to the other side of the world – someone who knew we would be gone for a set length of time and would not be coming back early, no matter what happened at home.

You might think it would be easy to find someone to take a two-week all expenses paid trip to Australia. At first, people were volunteering. But as I began to explain the requirements, they realized they would not be able to go. Some had small children and did not want to be away for two weeks. Some did not have enough vacation time at their jobs to take two weeks off. Some weren’t able to perform the required duties because of a back injury or other disability.

For me, it was important to find a travel partner with the right travel personality. I knew I would enjoy this trip no matter what. However, I knew I would enjoy it much less if my travel partner was full of anxiety, uncomfortable in various social settings and crowds, and unable to be flexible. In other words, I was looking for someone who was not “high maintenance.”

I didn’t begin to stress about the lack of a potential travel partner until September. While having dinner with my aunts, parents and sisters one day last fall, I made a comment about not having someone to accompany me on the trip. The next week, I got a text message from my cousin Kelly.

“Mom says you still need a travel partner for your Australia trip. I think I could do it – what do you think?”

What do I think?! I think this is the best news ever!  I had never considered asking Kelly to go with me, which was silly considering I had been asking almost everyone else.

Kelly and I discussed the realities of the trip. I explained the LONG flight, the reason for the trip. where we would be staying, and what duties she would need to perform. I was very honest about my needs. Every time I mentioned something, Kelly’s response was, “Well, that won’t be a problem.”

Kelly is a nurse and works at a hospital in Phoenix, Arizona. Although she does not do direct patient care like toileting and bathing in her current job, she understands the basics – like how to perform a stand-pivot transfer in and out of a wheelchair. For me, finding someone who already knew the basics, who was used to providing assistance, took a layer of stress off the trip.

Although Kelly is my cousin, we have always lived on opposite sides of the country so we have never spent long amounts of time together. Several people questioned me before the trip, wondering how compatible we would be. I never worried about that because I know Kelly is an easy-going person who knows not to sweat the details she can’t control.

Kelly gave up two weeks of her life so I could fulfill a dream, and I will always be grateful. Since Kelly lives in Arizona, we met in Los Angeles to start our journey. I wheeled off the plane to see her standing with a smile and heard her say, “G’day! Isn’t that what they say?”

Kelly was the perfect travel partner – upbeat, flexible, positive, social and FUN! I never heard her complain during our trip, even when things didn’t go quite as expected. Kelly just went with the flow no matter what happened. She listened to me practice my speech multiple times, offering suggestions and feedback each time rather than just tuning me out. She helped me perform at my best at every event while still charming the people we met with her humor and kindness.

At the end of our journey, as Kelly and I parted in Los Angeles after our long flight back home across the Pacific, we both said “thank you” in unison. We laughed as we hugged, knowing each of us had learned from the other during our adventure.

Kelly – thank you so very much for sacrificing two weeks of your time and energy for me. Without you, this trip would not have happened. I would travel again with you anytime because of all the fun we had. I appreciate all the little things you did to make it easier for me to be at my best. You were calm when I needed calm, eager to try new things, and able to be “on” without warning. From our time together, I learned new ways to appreciate so many of life’s joys. Your generosity and appreciation for all creatures helped me view familiar sights with fresh insight. I’ll let you know when I’m ready to go back!