Monday, November 11, 2019

It's a Sign - Camp Hyannis 2020



From "The Adventures of Runnergirl 1953":

That’s Why We Are the Greatest Sport Camp Hyannis 2016

“It’s a sign!” a group of runners exclaimed as they walked by my table at the Hyannis Race Expo.

They picked up my medal from the Bermuda Half Marathon.

“We were just talking about how we have to run Bermuda. We are putting it on our bucket list.”

The Mystic Runners from Wakefield, Massachusetts were deeply moved by my inspirational journey. In that moment of synchronicity, we became fast friends.

Paulie has been gracious and generous to offer me a table at the Expo to sell my books and inspire runners with my journey. The 2015 weekend was cancelled. It was a tough decision for any race director to make but treacherous weather conditions would have compromised the safety of the runners. I didn’t give a second thought about having a table at the 2016 Expo. I was running the 10K and planned to focus my energies on the race.

A friend messaged me on Facebook. “I’m so excited you have a table at the Expo this year. I saw your name on the table. Can’t wait to see you!”

I grabbed my Hyannis Half Marathon medal, my Boston Marathon finisher photo and medal, the few books I had on hand and my business cards. At the last minute, I put my Bermuda Half Marathon finisher medal in the box...




The other day on Facebook, MaryBeth, the Mystic who I met in 2016 posted this as her status:
Damn them. I’m being talked into another race. Well, actually, they were just discussing one. It’s always Michelle Marchese Corrado who starts these things. I was surprised to learn that I’ve only run 9 half marathons. I must have lost some medals.....



"Which one? I vote for Hyannis," I replied.

MaryBeth replied, "It IS Hyannis!"

"I just got goosebumps...I am going to be one of the guest speakers this year!" I said.

"Mary McManus well, there’s my sign. We’ll be there!..."Hey, that rhymes! Mary McManus, it is Hyannis. Another sign."

Hyannis Marathon Weekend
holds so many incredible memories for me.

We call it Camp Hyannis! All of our Camp Hyannis Adventures are included in The Adventures of Runnergirl 1953."

Here are a few cherished memories of our Camp Hyannis times:


I ran my first Half Marathon at Hyannis on the road to the 2009 Boston Marathon. I was embraced by the running community and running greats Bill Rodgers and Frank Shorter. I've been blessed to meet Jacqueline Hansen, who also wrote the Foreword to "Going the Distance: The Power of Endurance," the 2nd book in my Trilogy of Transformation. Jack Fultz, Team Hoyt, Dick Beardsley and Jimmy Garcia are a few of the other running greats we mixed and mingled with through the years.

Friendships have been forged and sustained through the decades at Camp Hyannis.

I am deeply honored and over the moon excited to be a guest speaker this year at the Pre-Race Pasta Dinner. I was inspired to reach out to Paul Collyer, aka Paulie who is the Mastermind behind Camp Hyannis weekend if he would like me to be a guest speaker at Hyannis Marathon Weekend 2020.

His reply was, "You would be welcome to speak to crowd...I believe I will also have steve jones and bill in house.
Please send a brief "promo"."

Tom and Ruth Anne are going to run the 10K.

I'll be sharing my inspirational story once again at the Expo and address the "crowd" gathered at the Pre-Race Pasta Dinner.

We'll experience the joy of reunion with our running family, celebrate healing, health and wellness and be open to whatever synchronicity and serendipity happen at Camp Hyannis 2020.

To register for Hyannis Marathon Weekend, follow this link.

See you at the starting line!

To your health and wellness
From my heart to yours
Mary

Be sure to visit my website at www.marymcmanus.com

Hear my interview with Kendra Petrone on Magic 106.7's Exceptional Women Show by following this link

My books are available on Amazon

Friday, November 8, 2019

The Missing Puzzle Piece



Facebook reminded me of this post from one year ago:
It's been quite a day. I must say that on the whole grace is greater than the unbelievable situations I encountered today. I remembered to maintain equanimity in the face of a**holes and that there are so many wonderful people in our village and in the Brookline community. A huge shout out of gratitude to our Emergency Responders Brookline MA Police Department who once again responded with compassion to Ruth Anne's crisis that required hospitalization. For those of you counting that's #5 since February. Her new DMH worker seems wonderful and I am hoping that DMH will step up to the plate especially after alleged inappropriate behavior by her previous worker who also was incredibly ineffective in his role. But I am also hoping that Ruth Anne will step up to the plate and do the work necessary for recovery. I am praying that the Team will change meds to give her relief and give her the boost she needs so she can do the work. I am exhausted after cleaning and laundry and many many phone calls today and continuing to ensure that her interests are protected but I feel so blessed and grateful for all the amazing people that I DID encounter today. Thank you ALL for your love and prayers. Please keep them coming. She is on 5W at St. Elizabeth's in Brighton.
Time for a good dinner, a hot shower and unwinding time.


There would be many more crises and 9 more hospitalizations until I found the missing puzzle piece in August of this year.

When Ruth Anne first entered the world of psychiatric hospitalizations, the OT's recommended that we do jigsaw puzzles to help with anxiety and to ease her off of her compulsion to go on the internet that triggered a worsening of psychiatric symptoms.

For 2 of the several puzzles we worked on, we were missing the last piece.

One piece we found under the sofa stuck in the radiator.

Despite turning the house upside down, we could not find the other puzzle piece.

One day we were cleaning out our car and lo and behold, there it was!

I taped it to my journal that we bought from Dr. Joe Dispenza's store.


It was a reminder to stay connected to the Divine even in the situations where there seemed to be no hope. Appearances, as I have learned throughout my healing journey, are not what they seem.

We rode the waves of crisis after crisis. We prayed and asked our friends for prayers. We wanted relief for Ruth Anne and for us.

I met Anthony Espina years ago at a Christmas Fair in Boston. He was here with his mother to explore Berklee College of Music. He didn't get accepted and will be the first to tell you that it was the greatest blessing in his life. He posted on Facebook that he was proud and honored to have written the score for the movie, "My Kid is Not Crazy." You can listen to the compelling and moving score on his website.

Our dear friends posted about their 6 year old daughter who was experiencing alarming symptoms of behavior change, restricted eating, not being able to put on clothes and a radical personality change. She was diagnosed with PANS.

Ruth Anne was complaining of symptoms of UTI's and an ear infection at different times throughout the course of those months of hell but, because of her dire psychiatric symptoms, no one was paying attention to working up possible physical causes for her condition.

And then a light bulb went off for me.

I remembered Ruth Anne's history of strep and chronic infections and how, at the age of 6, after having her adenoids removed and having had tubes in her ears, her kindergarten teacher asked me what happened to Ruth Anne. She had difficulty paying attention and would "space out" and her once outgoing, fun loving personality seemed to all but disappear.

We were blessed with a first grade teacher who took great pains to help her learn how to read and we hired a tutor.

At her third grade parent-teacher conference, her teacher welled up with emotion as she showed us samples of Ruth Anne's work. She wrote in yellow crayon all over the page in barely legible handwriting. She was upset she did not know about Ruth Anne's history of hearing loss which had been corrected with surgery or her struggles in earlier grades. We had Ruth Anne tested and placed on a 504 ed plan. She was diagnosed with ADD and Ritalin was recommended. We don't know what we don't know. The Ritalin fueled the fires of her food restriction that occurred after strep and pneumonia. She underwent testing at MGH, taken off Ritalin, diagnosed with GERD and placed on high doses of prilosec. An earth angel of a teacher, an Occupational Therapist and a few wonderful special education teachers helped her to graduate high school.

Things seemed to quiet down as she received an Associates Degree from Bunker Hill Community College with help from on campus tutors and support from me at home. She went into a deep depression when her plans to move to California fell apart after graduation from BHCC.

She decided she would go to Middle Tennessee State University, get in state tuition, work and go to school and follow her passion in the Country Music industry. She struggled through the days and would ask for plane tickets to come home and to Face Time with us on a daily basis. She got painfully thin and became obsessed with yoga and exercise. Yet somehow she managed to make it through and graduate with high honors.

When she returned home, the proverbial wheels fell off the wagon and two years after she came home the cycle of hospitalizations, med trials and error with mostly error and wondering what was going on began.

With this last siege of crises and the Universe pinging me about PANS, I did my research. I reached out to her primary care provider who promised me he would do a work up for the UTI's and would consider the possibility of long term antibiotics. He shared my hypothesis with her psychiatrist.

On September 6th, after her 14th and final hospitalization, her urine had an exceptionally high white blood cell count. Despite a negative culture, her PCP started her on high doses of antibiotics. I started her on ibuprofen 3X/day and adjusted her psych meds based on her presentation post discharge. St. Elizabeth's discharged her without doing the urine culture as I requested and she was not on a therapeutic level of her meds.

After a week and a consultation with a urogynecologist, and staying off of the internet which is a trigger for hallucinations and psychiatric symptoms given the brain inflammation, she began to clear. We hit a speed bump when she went back on the internet and had a therapist who was enabling her and allowing her to keep her behaviors secret which is all a part of OCD and PANS. Ruth Anne finally told us what happened. We fired the therapist, the Department of Mental Health worker and the social worker from the police department all of whom were unhelpful because they did not understand PANS and were creating conflict within Ruth Anne.

When I accompanied her to her appointment with her psychiatrist, she told him she was doing much better.

"That's a blessing," he said and asked what else he could do to help.

He made sure she has a new therapist and that a referral to Occupational Therapy was in place. He put in for med refills and said that if there's anything we need to reach out to him. He also told us that he never believed the diagnoses of schizophrenia or bipolar disorder but could not figure out what was going on. He treated me with great professional courtesy and Ruth Anne with the dignity and integrity she deserved all along.

She is running again although it is slow going as she begins the marathon of healing mind, body and soul.



She'll be running the Somerville Jingle Bell Run 5K and the Hyannis 10K with Tom both BA Event Promotions events that welcome all paces for their races.

She volunteers and for the first time in 5 years believes she has a future although she is keenly aware of the toll PANS has taken on her brain.

We take it one day at a time giving thanks and feeling blessed for when things go smoothly and take deep breaths as we get through the tough miles that come with PANS.

Ruth Anne has a long road ahead but she is past the starting line of this marathon of healing now that we have found the missing puzzle piece.

Ruth Anne has given me permission to share her journey with the hope that it can help someone else!

To your health and wellness
From my heart to yours
Mary

Be sure to visit my website at www.marymcmanus.com

Hear my interview with Kendra Petrone on Magic 106.7's Exceptional Women Show by following this link

My books are available on Amazon





Tuesday, November 5, 2019

#LaCosteStrong Update - Don't Give Up! - All You Need is Love



On September 18th, I wrote a blog, "#LaCoste Strong - A Community of Love, Kindness and Big Hearts" featuring how a community came together to support Kevin and Ali LaCoste and their beautiful family following a fall that led to a traumatic spinal cord injury.

I feel goosebumps all over as I share this update with you.

On September 28th over 1100 people gathered for the 6th Annual Middlemiss Big Heart 5K. A portion of the proceeds went to their first ever race beneficiary, The LaCoste family.

There was not a dry eye on the field as Kevin addressed the crowd over the loud speaker:

"I'm a little sad I can't join you but next year I will definitely be there to celebrate Joseph and all the beautiful things he has done to inspire us even in his short life. Today... today while you're out there think about something you're grateful for and find a way to do some small kind act this week. Not only do the kind act but really think about how it made someone feel and think about how it made you feel as well. I hope everyone has a great day today and most importantly if you see Jack Middlemiss tell him I'm looking to kick his butt when I get home."

That last comment about Jack was in reference to a Q and A Ali had back on September 20th in which we were able to ask Kevin both light hearted and serious questions. Ali limited the questions to 10 but just had to include a Bonus Question from Jack:
11. Bonus Question!!!!! What are you going to do when I come to Spaulding and kick your butt? (Jack Middlemiss)

Kevin: I’m going to ride circles around you in my wheelchair until you get dizzy, then I’ll push you down, and kick your butt!!!! Do you want to piece of me? Or the whole thing?


I was blessed to accompany Ali and Kevin to the Abilities Expo on September 13th. Kevin and Ali had the opportunity to explore resources and equipment that would improve their quality of life as Kevin recovers from his injury.


As Kevin readied for discharge from Spaulding, Ali posted this about their new van:

Because of the wonderful people in our lives, Kevin and I were able to purchase a vehicle that will allow us to have the freedom of a “typical” family. Though the idea of driving a “mom-van” has never thrilled me, this car is completely awesome. The front seat pops right out, so that Kevin can ride up front where he belongs.

When he tried it out today, he navigated in and out of the car with such ease. He’s already a pro at figuring out this new challenge of his!

For those who have donated, fundraised, bought a t-shirt etc. Thank you. You took so much stress away from the pain of car-buying. You’re allowing me to help transport my husband in style.




The day everyone was waiting for happened on October 12th. Kevin was discharged from Spaulding Rehab Hospital after spending 83 days away from his home.



All the money was raised and crews worked tirelessly around the clock to make sure that Kevin would return home to a house that was accessible for him.

You & Me: We got this. That’s the sign that Kevin and I walked in to see in our beautiful new bedroom this past Saturday. I’ve repeated this statement to Kevin and to myself countless times over the past 3 days. I’ve wanted to reach out to you all and tell you that everything has been great. That our transition was seamless and it’s been easy. I’ve wanted to tell you that I’ve been an amazing caretaker and Kevin couldn’t be in better hands.... but I’ve been honest with all of you from the beginning, so I’m not going to start sugarcoating things now.

Saturday we came home to our dream home. Love and kindness radiated from every part. Signs lined the streets- made by the children who Kevin has influenced in some positive way. We were driving our new car that fundraisers helped us purchase. We were accompanied by my sister in law Lori LaCoste O'Donnell and brother in law Craig O'Donnell- who wouldn’t have let us travel that road alone. We came home to our excited children and my parents (Gail Buccini). We were joined by Kevin’s mom(Brenda Taylor LaCoste). There was so much love- along with a mix of emotions- fear, sadness, happiness, and uncertainty.

On this day of our return, when Kevin exited our car, he went in the opposite direction- away from the house. I had no idea what he was doing. He went onto the road and stopped in front of the tree where the accident happened. He paused for a while, released some tears and reflected on the fleeting moment in time when he was trying to be a silly dad and it all went wrong. And then he rolled into his new beautifully accessible home- with deck and patio to boot.... and shed some more tears, for a different reason this time.

The few days we’ve been here have been completely overwhelming. But with each day we know things will get easier and more routine. We know that in times of need, we have a HUGE army of supporters. And in due time, we’ll be calling on all of you to check in on and visit us. ❤️💜❤️

I can’t say that things will be perfect or that we’ll know what to do with every twist and turn.

What I can say with an open heart and true belief is that Kevin and I do “got this!” There is so much love in our home and surrounding us from all aspects of our lives. All four of us sleeping under one roof is a dream come true- no matter the circumstance.




Ali posted wonderful photos of the family experiencing watching their son's Saturday Flag Football and Baseball games:


They went to a friend's house to watch Patriots Football:


Right after Kevin’s accident I often thought of how was I ever going to be strong enough to get through this. I knew that I needed support, so I did some online research and found a few Facebook support groups. I quickly joined them and read the experiences others have handled- and tried to imagine the tumultuous road that we were destined to travel.

Most upsetting about some of these posts was that many complained that their friends and families abandoned them in their time of need. Now, I understand that every story is different and people handle problems in their own ways, but I couldn’t help but feel heartbroken. And I also felt so fortunate that I knew that would never happen to us.

Tonight, my feelings were affirmed. We had friends who sought us out, made sure they had space that Kevin could get to and had us over for a “normal” Patriots game viewing. The room was cozy, the fire blazing (which is good because Kevin is so often cold). We had munchies, beverages, and good conversations. Jonathan Ash and Colleen Donohoe Ash have proven to be true friends and in this new world we’re navigating we need them now more than ever. ❤️

It goes without saying that Lori LaCoste O'Donnell and Craig O'Donnell are also in it for the long haul. But we’re pretty happy that they’ve been hanging around a lot too. 😘
#LaCosteStrong


They were reunited with Kevin's inpatient team at MGH ICU, some of whom had never heard Kevin's voice because of the tracheotomy, when they went for a follow up visit with Kevin's surgical team:


Lisa Hughes and David Wade did a follow up story on WBZ that you can watch with a box of tissues by following this link.

Kevin Staffin exceeded his goal of $3000 to raise money for his dear friend Kevin and had to man up to his part of the deal that if he reached his fundraising goal (and he raised $3781) before he ran the New York City Marathon then he'd have to don Red Sox gear and make it his Facebook profile picture for at least a week! Kevin S. is a die hard Yankees fan.


Here is his finish photo from the Marathon which he dedicated to Kevin (notice the red socks):


And then on 10/31, we saw a Facebook post that brought goosebumps and tears:
Dear Robinson Families,

We are so happy to announce that, tomorrow morning, Mr. LaCoste will be coming to the Robinson School for a visit. We will come together as a school community in the cafeteria, and Mr. LaCoste will read us all a fun story and talk about the different SPIRIT core values the story addresses. We all look forward to spending some time with Mr. LaCoste!

Students are encouraged to wear a "LaCoste Strong" shirt, or a blue/gray-colored shirt, for this special visit.

This will, hopefully, be the first of many visits from our beloved principal.




I had a feeling it was no coincidence that Kevin was returning to his school on the day that Andy Grammer was going to be in Boston for the last concert of his Don't Give Up Tour.

Kevin's Army as we have come to be known flooded Twitter and Instagram with messages to Andy Grammer about why he should connect with Kevin while in Boston. With the help of angels both on earth and in heaven, including Erin O'Malley Mandeville of Boston's Mix 104.1, Andy Grammer sent this message out to Kevin and the Robinson School:



Here's the full video of Kevin's return to his school. I highly recommend you watch the entire video and feel the love surrounding but if you fast forward to 7:43, you'll see the kids singing Don't Give Up on Me to Kevin and then the surprise video from Andy Grammer:


Life happens. Tragedy strikes. Somehow with gratitude and faith, kindness and a village surrounding we don't give up and make it through.

All you need is love and as we follow the journey of #lacostestrong we see that theme resurface time and time again.

You can donate to the LaCoste Strong GoFundMe page by following this link.

To your health and wellness
From my heart to yours
Mary

Be sure to visit my website at www.marymcmanus.com

Hear my interview with Kendra Petrone on Magic 106.7's Exceptional Women Show by following this link

My books are available on Amazon