"IX + III = XII”

Has it been a year?  It AWL was in slow motion for me and still has its moments. Today we have to appreciate, Melissa says not to celebrate, the accomplishments of a person who basically learned how to do so many things we take for granted in our lives. She has many victories and some setbacks, but Melissa fought back and I am so thankful. She remains optimistic and positive about her life.  I have only seen her get very sad 2 times during this whole process. It would be so easy to get depressed and give up.  She does not!

I have seen so much in my life change since my Mother's passing in November 2018. I have had enough and when I thought I might loose Melissa I was so very, very sad. Without her I would be lost again.  She found me and never let go.  She set the rules and I followed. Melissa was/is my North star to chart my course.  Her courage and tenacity is inspirational.  And this past year it has been an honor to be by her side to assist, encourage and occasionally say to sit up and support those lungs. Oh, and don't feed the dog your dinner [hah].

So now you say, what does the next year look like for our friend? Well we will continue to chase the balance "fairy", who eludes us much. And hopefully rebuild the ability to retain short term memory (she says some funny/wacky things at times, watch out!). Her goal is to be able to not rely on me as much, but some things it might not be practical until she is stable physically and can process quickly (make decisions). I give her much room to be independent, but some days it is evident she is just not safe. Soon her goal is to toss the cane and move around with out it; I think it is possible in a month if she focuses on her exercises; we shall see. MY goal is not to have Hot Dogs every week for dinner or lunch. She LOVES Hot Dogs or bologna, YIKES!  

A year ago the Neurosurgeon said "marathon", okay I get it! It was appropriate at the time and scary to think about. I now see light at the end of a very narrow tunnel that I did not see a year ago. I had no idea what to expect or how to trust the process. I do know after seeing this woman suffer so and then rise up and become victorious over the circumstances she was dealt, that my faith has grown much. She moves forward, occasionally to the side at times physically and metaphorically, but always to the light that I see. Her compass is set for a course to a new path and direction in her life.  

I am convinced that she was spared to tell her story as she only knows it; when she is ready and in her own time. We as a people know so very little about Brain injuries and rely on studies and science. But if the information is generated from a person who has experienced and overcome, then that becomes hope for those who suffer a TBI and for those who heal. Melissa has a gift in the making.

"Let us run with patience the race that is set before us." Hebrews 12:1. 

 p.s.  Please forgive me Kate Turabian I did not double Space after a period like I was taught.

IX Months, stay tuned....

"IX months”

"Beware the ides of March" came and went without any major events.  And that stupid "rat" in Staten Island said Spring is coming. Brrrrr.  It is hard to believe that it has been IX months since the episode that began this journey.  So many positive steps forward with the aid of the Megan Gepp, Kessler Rehab personnel and support at home especially from "Nina Belle", the comfort dog/beggar queen.

Melissa is trying to transition to the use of a cane with "spotting".  Her balance is so much better but still she still has moments of instability. Together we are trying to work on that, and so are the Therapists at Kessler.  Sometimes she gets ahead of herself and moves too fast or she turns a bit quickly and gets her feet tangled.  If you haven't seen her since October or even January, you would be amazed.

Short term memory is not so great still.  I am trying to get her to write things down in her Red Organizer Book so she can go back and look at it.  That is a work in progress for sure, but I am not worried because some things she can recall with a bit of processing.    

Long term memory seems to be very good.  So that is a victory.

Getting back into the workplace is still "to be determined'.  I don't want to put her in a situation where she might embarrass herself if she cannot remember from one minute to the next what was said.  This happens sometimes even when we talk about daily plans or goals.  I will try to do this in  easy steps.  She acknowledges that she has a huge deficit here, but is willing to work on this with assistance.

The other day she asked me when she could drive.  OMG, that would be scary.  Then she got a folder at Kessler on taking driving lessons.  I will look into the process of learning how to drive again after a TMI/Stroke.  I told Melissa, "let's focus on walking without assistance first and then you can move onto driving a car."  Truly, driving a car is not important now.  The ability to walk down the street standing tall, face forward without people as "spotters" is paramount.

I don't know where we are in the marathon except it is a challenge to stay hydrated and fueled so we can finish.  My legs hurt, my shoes are making blisters and my singlet is rubbing me the wrong way.  Got any bandaids?  I get out and ride with my NJ League NICA MTB team, "Jersey Shore Tidal Waves"; and Saturday had a good day on the road bike.  Our commitment to overcoming has not waned.  Our goal is still a trip in August if Melissa is more independent/agile, the virus scare is over and toilet paper is plentiful again.  Time will tell on those fronts.  

Lastly, I just want to say I have only heard Melissa say once, during the past 9 months, that she was overwhelmed and disappointed.  She bounced back the next day mentally and spiritually. The Melissa pre June 15 was optimistic and tried very hard to rise to the top, see the good in everything; "no negativity".  That has not changed, it is a part of her character.  We grow together and in the end this will make us even stronger.

sIX Months

"6 months does not a year make”

Changed a Neil Simon Line from Barefoot in the Park, but it applies.  It has been a long haul, but yet WE have only just begun.  Melissa is doing awesome work at PT; working on the speech, cognitive and physical skills.  She is getting much better at dressing herself and getting around with some assistance ("spotting" her like in tumbling class).  After being home for a bout 3 weeks some of the circuitry connected and She made some big leaps.  Lately we have been on a plateau, but that is fine I will take that over the suffering I saw this woman endure.  

I don't know what to expect in the next few months, except more marginal gains that add up to a huge step up.  No pressure, no worries, "time and patience" as Dr. Liefer the Neurologist said last time we visited him.  I knew that from the beginning--"Marathon" as Dr. Eisenbrock the neurosurgeon said to me in his first sentence.  No hello, no how did this happen, just we need to get your wife in surgery to save her life.

Melissa is surprising in what she says at times.  Sometimes does not know what the day it is or date and then says something very wise and profound.  I enjoy her company and am not frustrated by the care giving tasks I perform/assist her with.  Thanks to my sister, Angela, she showed me the way to do this and how you have to "suck it up" as Coach Kiblai said in Junior High.  Melissa enjoys her days with Megan, when I go to NYC to spend a day in the office.  AND once in a while I get to ride my bike.  Not worried, those days will come, remember "patience and time".  Thank you to our neighbors Meghan Frost and Mary Lonsdale for their assistance over these past few months. 

Melissa is focused on goals we have talked about for the end of Summer.  This will be a HUGE task, but WE are willing to "go for the Gold" as they say.  

And on a very solemn note, WE both miss our precious little Cairo who went to the BIG green meadow just before heaven.  She will be waiting for us when me make our journey to the next realization.  I miss her every day.  So many things remind me of her and the way she approached her life, never complained and always hanging with US, her pack.  Melissa said she is not able to process it yet, which is fine all in good time.  We still have Nina Belle, "Forty Ninuh" is not Cairo but she is loving and gives Melissa comfort each day sleeping/resting by her side.

Thank you AWL for your prayers and good "vibrations" for Melissa.  Don't Stop NOW, there is more work to be done.  But know that if two or more agree on anything that they ask, then it shall be done for them.  By faith, positive thoughts, whatever your belief is; continue to believe in a complete healing.

Cairo PotterIx

1/1/2007--12/1/2019

We love you so much Rhoady Rho

Our Sweet Little Girl

 "Our Sweet Little Girl"

Our hearts are broken and life is empty today after the loss of "Our Sweet Little Girl."  Some would say she was just a dog, but to those who knew, Cairo was more than that to Melissa and I.  She was a HUGE part of our family who we loved so very much.  When we were apart the 3 of us could not wait to get back together in the comfort of our friendship, trust and love.  I knew the first day we saw her at Happy Tails Rescue Center that it was a done deal; that dog is coming home with us. She was saved then, at almost age 2, by Rescue Ridge from most certain euthanization due to the fact she was found on the side of the road. She had been wandering around for a week or so.  Her former owner was not to be found.  And who knows the story there, AWL rescues come with a background of mystery and "baggage".  She was well trained and very smart and had a HUGE appetite.

Melissa and I have had Cairo 10 years and 8 days in our lives.  She definitely helped me on my bad days at work, in life and most recently dealing with Melissa's road to recovery.  But she had been through much in the past year with 2 operations. I thought she might stay with us longer even after I got the news that she had cancer. In August our Vet tried to extract it all, but it was not possible.  The inevitable was always looming in the background.  Myself, I was very selfish thinking she was going to beat it and if you saw her you would say she was "fit as a fiddle." Her 13th birthday was only a month away. 

I have been lucky to know 3 dogs that their personality went WAY beyond just a loving pet. Jingles, Benedict and Cairo had true personality and connected with their family in many ways. "The Pupperooni" as I named her, will forever be remembered for her protection of her family, played hard and rough, marching to the park down the street because she wanted to go, she loved to run in the woods like a "woodland nymph", very obedient except when someone made deliveries at the office, she loved to be loved but did not give out many kisses AND for such a little girl she had a very healthy appetite--a sly beggar finding the weakest link at the table.

I was with her to hold her and comfort her as she slipped away from this life into her next realization.  I have never experienced so much sorrow as I did last night knowing that Cairo would not be coming home with me to be with her family.  She will be waiting for Melissa and I in heaven. In the meantime in that great lovely lush meadow I know she is free of pain, has her eye-sight back and is having fun.  "There will be plenty to eat Cairo so slow down.  Enjoy the heavenly treats, they are plentiful."  You will be loved by Us until our time comes.  Nobody could ever replace the love, friendship and comfort you gave Mommy and I.  Cairo you were truly one of a kind, a real personality that was full of energy and life.  She was the sweetest little pup I ever knew.  You will be missed.  

Cairo PotterIx 

January 1, 2007 - December 1, 2019

If you care to make a donation in Cairo's name to Rescue Ridge or Monmouth SPCA it would be appreciated.  Save another life who will save others.

https://www.rescueridge.com/general-donation 

https://www.monmouthcountyspca.org/support/ 

Hasta La Vista....

"El Fin”

By no means is Melissa out of the woods when it comes to balance/mobility or dodging swallowing the wrong way and choking, but she is getting there slowly.  Remember I said small steps, marginal gains, long journey and marathon.  She will eventually be released to the next phase of her healing, but not until she is safe and will not hurt herself.  I have nothing else to report or write about and therefore.  I am done.

So this is my final submission.  Remember the old Virginia Slims slogan, "you've come a long way baby."  Well Melissa has done exactly that, from fighting for her life beginning June 15th to now.  I am proud of her tenacity, but I am dealing with a Fox who can be very sly.  She will be fine in the end, when that is WE do not know.  She may want to return to her old life or make changes (I hope) WE shall see.

It is interesting to know how many new people I have reached via the assistance of those who passed the “Daily M” along.  I am so happy to know that AWL were informed of their good friend’s journey.  Thank you so much. This was very therapeutic and creative for me who did not pay attention in high school English class because I was going to play football or baseball in college.  And if you see Mr. Livingston my College Prep English teacher, tell him that I did need to read Hamlet and know what a dangling particible is now.  Oh, and tell him I am not a clown like he predicted so many times that year in class. 

If you want to reach me, I will be in Pocatello, Idaho.  

p.s. Melissa has opened AWL your cards & letters sent since “June-ish”. She is really touched by your well wishes, support in tough times and love.  She thanks you very much and will be corresponding with you soon—no texts, no emails, no social media but the old fashioned way via USPS.

"Good night Mrs. Calabash, wherever you are."

Elvis has left the building.

6 weeks....

“6 weeks does not a therapy regime make”

Today it is 98 days in hospitals AND next week on Tuesday 6 weeks at HELEN Hayes.  That is 4 weeks of Acute Therapy and 2 weeks of Subacute Therapy.  That means 4 hours whittled down to 2 hours. [hope I have peaked the interest of the “Numbers People” who read this].  The next 2 weeks will be crucial for Melissa.  She has to pass a swallow test for solid foods & liquids.  Work on her core for stability for the mobility.  And get rid of the stomach “peg” to supplement feeding.  She is eating purée food now, and had a test grilled cheese today with MUCH coaching from her Speech Therapist.  Melissa doesn’t like the food and I said this isn’t a 4 Star Michelin restaurant.  I taste the food and it is better than NY Presbyterian which is rated #5 in the universe.  Although my Mother claimed it was the filthiest hospital she has ever been to.  She was a very tough nurse and knew the profession of giving care. [tough love ya’ll] 

If by chance you get a “wacka-doodle” (love this Liz thnx) phone call, TXT, Email, sorry.  Melissa right now suffers from “sundowners” (a form of dementia). I gave her the Smart Phone but....  Might be taking it away soon if this gets worse.  Dementia is a byproduct of the injury, but could change with time as the brain heals.  I witnessed this in 3 generations of my family and one in another’s, the chapter has not ended on that one.  I am dealing with a lovely person but when the clock hits 3:30-4pm it begins.  

Melissa and I played cards today.  It was fun, she was really focused and calculating.  She lost twice but really won, she did not count her cards correctly.  So it shows me her memory is good in some areas, but needs more time to heal.  She cracks me up, so serious about winning.  HAH.  We have lovely conversations about back packs/luggage she says is on the top floor with money hidden in them/it.  Melissa said she saw my Mother and Father the other day with my sister, Angela.  I asked her what Mom was wearing, she said she looked good.  My Father was nervous, talking much.  Was it a dream or a visitation....  if it was a visitation, “Mom and  Dad can you contact me, I have many questions about what lies beyond.” 

To Sum it up 6 weeks could evolve into 8 or 9 weeks in West Haverstraw NY.  Got to Swallow, chew solid food, find your stability/mobility and no more feeding tubes in the tummy.

*pray for healing in the brain, no more dementia

**start eating food to gain strength, accept the quality of food, as my Grandfather would say, “We have plenty to eat and nothing to waste.” 

No place like home....

"I want to go home”

“There’s no place like home.”  Immortal words uttered by Dorothy Gale after a cyclone ripped through her Aunt and Uncle’s farm.  But what was her reality when she finally made it back to the place she yearned and hoped for:  more of the Great Depression, hard work in a bleak landscape, maybe life would change after her fantastical journey to a colorful and foreign reality.  An experience like that should temper your life and your choices right?

Melissa also wants to come home.  Her “Toto” is waiting her to comfort her on a journey to the unknown.  She has stairs to conquer, bathrooms not equipped for her special needs in her current state of disability (which will change slowly), a rambling living space designed for those who are very mobile.  Nobody ever thinks of creating their dream home to accommodate situations that develop through aging or bad luck disability.  Melissa and I have often discussed designing a home with such features “just in case”.  I have seen these events occur in my family and Melissa’s and now it has struck like a bolt of lightning on our wonderful life together.  

I am very good at making something out of nothing, my theater craft and my childhood experience and creativity will come in handy.  You take what you have and you adapt.  My Parents taught me at a very early age, you can make a situation a positive one despite the circumstances, despite the odds that are set against you—be strong, be creative, stay focused on the goal.

Yes, she will come home when her Care Team feels she is ready or the insurance company says no more.  The insurance companies control the health process, boy do I get that.  I want her home but she must be mobile, eat and no stomach feeding tubes.  I know she will REALLY heal once she is in her comfort zone.  This will “up my game”, but I am ready to get Melissa back on track.  So as Glinda tells Dorothy that she doesn’t need to be helped any longer. She’s always had the power to go back to Kansas. “I have?” Dorothy asks. The Scarecrow exclaims, “Why didn’t you tell her before?!” Glinda responds, “She wouldn’t have believed me. She had to learn it for herself.”