I had the opportunity to attend a Celebration of Life for a friend from childhood who passed away this fall. He suffered a sudden heart attack and passed away after a time in hospital. My heart broke for his wife and two sons. The last time I had seen him, at a high school reunion, he brought his sons and we met at another friend’s home for a pre-party before attending the reunion. Very charming and good looking boys. Just like their dad.

Since high school reunions have their own very interesting dynamic, they really are yet another obligatory activity, much like the traditions of American high school itself. Even though my high school senior class held a reunion every five years, (except for during the pandemic) I only attended two, the twentieth and the thirtieth.

At the twentieth, we were all approaching forty, not quite there yet. Most had children, were married, and in the formative years of a successful career. Education completed, except for some higher degrees, which sometimes came later and for others were not necessary or desired. Real estate was a hot topic. Everyone looked surprisingly like the last time we were together, back in the seventies.

The thirtieth was quite different. Now, with children who were approaching their own high school senior year, or with jobs or education still open to them. Getting together was a time of exchanging photos of our grown children, chatting about our jobs and what would come next in terms of promotions and IRAs, and side hobbies that were becoming more accessible, since children were growing or grown, or maybe even out of the house. Real estate still a hot topic as vacation houses were part of some accomplishments.

But this gathering was totally different. Now, we were gathering to honor a really good man who was no longer with us. In doing so we also mourned together those who had passed away in recent years. One friend brought the pewter mug of a friend who died about ten years ago, also quite suddenly, to represent him. It was an honorable gesture. This was a small group, which led to intimate and leisurely conversations and no pressure. During the evening I was struck at how different it was now, after forty seven years since graduation. Many of us are retired, those still working close to plans to never retire and some with plans to retire in other states, in various warmer climates, with lower taxes. Many grandchildren for some of us.

There was more time to just be together. There was more honesty. There was little ego and a lot of just knowing we are all lucky to be alive. There was time to remember some really good times, particularly with our friend whose life we were celebrating. No one said, ‘you look exactly the same’. It wouldn’t be true, but much like Hawthorne’s Dr. Heidegger’s Experiment, we still see each other as we were in the seventies with long flowing hair and glowing friendly faces.

Perhaps, the magic that happened that night was just going to happen anyway at such a get together. But for me having just gone through a trauma that was totally unexpected and will affect the rest of my life, I felt that this was a true celebration of all our lives. Successful people carry themselves tall. People all measure success differently. With two healthy adult sons and one disabled who lives in a hospital/group home, feeling unsuccessful comes into my psyche quite often. But this night I saw myself among my friends as a truly successful woman. One whose life is changing at the age of sixty five, for the best. No matter what comes next, I am ready for it, because I have friends who will always accept me. Friends who are successful, kind and compassionate, which is truly the success of life. And we have a lot of life left to live. Although you are gone, Art, you taught us many things and we will never forget you.

The first time I moved was of course college, but I commuted to college for all of the last year and a half. Then I got married. My husband lived in Georgia and that was the plan, so I moved to Georgia. But I didn’t actually pack all of my clothes. I really had no belongings at that time, just my clothes. Never thinking that there’d be any problem, we had lived in the house since I was five and the move to Georgia was temporary, it simply didn’t occur to me that I should have packed every single thing, all my books, clothes and move that to Georgia. I was the oldest of six, and the first to leave the house.

Georgia, and the marriage were great. Except that there was a problem with my husband’s job and we moved back home with a better job. Once I got home, I lived in the ‘family home’ for three months while we bought our first home instead of renting. Weirdly, when I looked in my old closet in the room I had lived in for twenty years, all of my clothes were gone. This included all of my prom gowns, bridesmaids gowns, dresses I had designed and made for myself (it was the Disco years). And a lot of winter wools that I just didn’t bring to Georgia. I had even made a corduroy blazer and a bunch of matching skirts, all gone. This was a wonder to me. Perhaps I was wrong to think that if anyone in my family wanted to do away with personal belongings, they would have asked, if not simply told me.

As a mom at this time of a beautiful boy, age eight months, I seriously had so much else to think about. Primarily a new home, a new job and a new life. Coming back to New Jersey was what we both wanted, our families were here. The pay was a lot more, but so was the housing. We found a little duplex, bought it and were happy there. Then we were expecting again, and looked for another home. Not long after we began, the market at that time got hot. The first time the market was weird, 22 % interest rates on mortgages, now interest rates were 12% and we bought a small, but very cute home on a half acre of land.

About three years later, we were expecting again, I was working as a substitute teacher, and we were on the move again for a larger home. Again, we found the cutest house and moved in this time on an acre and a half….getting closer to what I had been used to in my youth. Raising three boys together we were very happy. I went back to school for a higher degree and began teaching in public school. That was in 1995.

All was going so well, we were happy, we were going to mass, one of our boys was an altar server, we did Cub Scouts, taught CCD sacramental preparation, me communion second grade, together Jack and I, confirmation. I was active in the community, Jack was active as a soccer coach for thirteen years. Then suddenly everything changed. My husband had been diagnosed with Epilepsy when our youngest was a baby. Our middle son was diagnosed at age thirteen. But my husband’s Epilepsy was always controlled by medication while our son had Intractable Epilepsy, never controlled by medications. Even combinations of medications.

A year after our son presented with the seizure disorder, my husband suddenly, while I was recovering from back surgery, presented with terminal sinus cancer. Because he traveled quite a lot at first he didn’t credit the signs, much like Katie Couric’s husband who said the same thing around the same time after being diagnosed with colon cancer. This was such an unexpected blow, such a shock that we still suffer from recurrences of feeling it over and over again, much like PTSD.

The next few years are a blur of raising three boys, ten, fourteen and fifteen. And getting them all through high school with a dad who had to undergo radiation and chemotherapy, to his beautiful face. I tried my best to be there for them. We attended all sports, shows, traveled to forensics tournaments all over the state and out of state. We did miss, to my deepest regret, the last event our middle son did in high school, he emceed the senior event, BMOC (Big Man on Campus). I couldn’t leave my husband so I missed the event. both of us missed that event, but his older brother was there much to my relief.

My husband Jack passed away on August 28, 2001. It was at the hospice and all of his family were there. No one was missing. His two brothers from California, both of his parents from California, and all of my family, my mom, dad, all of my siblings and most of their wives and all of the children. We were all so grateful to be together but so very sad to know this was the end.

I tried my very best to make my husband comfortable in those last days, as I had done throughout the entire illness. All of the surgeries and chemo therapies, and radiations, and the Gamma Knife, the days that he couldn’t eat or swallow. Or walk. My husband was a Marathon Runner, a great athlete, ran track in high school and college, and cross country, and learned soccer late in life as a coach he was determined to know the sport and played for his company team for years.

Jack passed peacefully truly surrounded by all of his family. His funeral was more beautiful than our wedding. He was loved by so many.

The loss of my husband will forever be the most incredibly sad and complete loss in my life. So whatever I say about what happened after, has nothing to do with the love and devotion I had towards this incredible man. In college my friends called him, “Mr Mellow”, he would play his guitar and sing, as calm and as cool as any guy who doesn’t want any attention, just to be there. Just to sing those great songs. My life has never been the same, my missing him has turned into a painful loss, the most painful loss I could ever have.

This year brings us new hopes, new adventures, new places to live and work, and all of that brings new information, new anxieties and new joys.  But the best part is, we are still here.  And we are stronger than ever.

After a really lovely Christmas with our whole families, we are grateful that West Coast son made it all the way across the country to come home for Christmas. Seeing all of our children together with all grandparents, was magical.

Our children are the one collective thing we are most proud of.  Yet when one is ill, it is like that lovely mobile, which has that little glitch, that tiny broken wing of the butterfly, and once ponged the whole mobile is tilted, unguarded, looking unstable, waiting to just … fall.  And yet all of the rest of the pretty mobile is lovely, fragile, but lovingly staying together with that collective strength that makes the whole thing just flow.

This year we said hello to a new hospital in Oklahoma, and goodbye to the old one in New Jersey.  This year we face more hope for recovery than we have seen since our Christopher was still in New York.  It means a lot of Skyping, a lot of phone conferences, a lot of letters, and a lot of travel.  But mostly it means a small dedicated team of Traumatic Brain Injury Specialists who will work because they want to save him.  Big difference between private enterprise and the alternative.

And yet the state of New Jersey is the gift that keeps on giving, as a really kind and generous friend summed it all up for us.  We have had so many problems that all I do is write letters, and go to meetings, and check with our attorney.  Seriously?  Shouldn’t you all just be glad that you finally did the right thing for our family and got our boy into a really good hospital with a really good team of brain injury certified specialists?  I sum up the problems this way, I think of Hamlet: “One may smile, and smile, and still be a villain.”

My favorite thing about the new hospital is the therapy dog, Levi, he is beautiful.  I am so happy that Christopher has him all week long, and their bond is so intense.  I was so worried because Levi is a light golden retriever, much like Taylor and Savannah, our Goldens from way back when.  I was worried Chris would have problems bonding after losing two of our favorite family members.  But that didn’t happen.  Phew.

I took a break from this blog for a few months, but I need to get back into it.  Grief overwhelms me for the things I cannot change, yet bright futures are in the works.  Our past is filled with a tremendous loss, but the tragedy of the recent shooting on Valentine’s Day washed me out of a blind dismay that I couldn’t put into words.  There is no simple answer, but we will fight this, we will survive and we will know the difference between that which we can change, and that which we cannot.

 

 

 

 

 

 

We are in the final stages of a real chance for recovery as we await the last vestiges of discharge from the nightmare we are living and moving my son to a specialized Neuro-rehabilitation facility which will finally treat the real problem, Acquired Brain Injury.

It has been a long seven years.  I have done much reading and much research, and one of the heartbreaking pieces of all of this has been learning how many people are wishing for a bed, (a BED!), in a psychiatric facility who truly need it. It’s hard to imagine suffering people, who really need to be in hospital, but can’t get the help they need, and I have a son who can’t get out.

Because so many states have followed what was supposed to be the best chance for recovery, community based facilities, many people can’t get treatment since so many psychiatric facilities have been closed, but not enough ‘community based’ homes, refuges, group homes,  have been opened. I have learned that many people are instead institutionalized in prisons, instead of hospitals.

At first when I started to read Pete Earley and found out about his son’s hardships I couldn’t relate.  Then I thought long and hard about what we have been through, and I found that, although our story is different, it is our story, and it is imperative that I share.

It was supposed to be a good thing, to deinstitutionalize people and send them into the community, but first you have to put in place those significant homes, group homes and other facilities before you go and close down facilities that are working.

All of us of a certain age have one single reference point to psychiatric institutions and that is the film, the book, and the play: One Flew Over the Cuckoo’s Nest, the 1962 novel written by Ken Kesey.  And oh boy, that Nurse Ratched, tortures, in so many ways that no one really knows how accurate her portrait is. But, she tortures, in that she ratchets up situations that are not in her realm.

In future, I will talk of real staff members who are ‘Nurse Racheds’ real people from 2011 to 2017 who still exist.  Frequently, they are not nurses at all, but staff that use their existing power to try to control, scare and in-dignify their patients, their parents, and their advocates.  Yes, it happens, and I have seen it.  In our case they are never the nurses.

So, at this point we await transport, and complete discharge.  And it must be by Air Ambulance, because you can’t just take a person, with severe Epilepsy, an Acquired Brain Injury, who has been institutionalized for no reason other than that no other facility, acceptable for the specialized treatment he really needs, has accepted him. Although we tried, but we were ignored, dismissed, or rescinded at the last minute, for seven years. You can’t take that person 1,200 miles away, to a specialized facility on a commercial airline, with a layover and a change of airplanes.

My anxiety is at a premium right now.  I traveled only once in a small plane, for a short trip, with friends one summer evening, and I was nervous then!  All of 23, expecting my first child, and after I was up there and saw the full moon, it actually was lovely.

How is my anxiety to compare with my son’s anxiety?  He doesn’t believe the transfer will ever happen. He thinks it’s just a dream.  How will I find the strength to keep my frustration, anger, and ultimate fear from percolating onto his fragile psyche?

I don’t know right now, but I only know it’s almost over.  And my son deserves to be treated by specialists who do not work for the state, who know what they are doing and who want to care for him.

My son is a person. And his life is important. His future should be intact, and I need to believe in him, his bravery, his brothers’ constant perseverance and hope for him, and most recently, the friends and  family who have come forward to fight for him.

I will get on that plane with my son, his brother, and the medical staff who are dedicated to this task, and we will bring him to this facility all the way to Oklahoma.

Maybe during the flight we will take turns reading one of his favorite books, The Outsiders, S.E. Hinton, and set in Oklahoma.  Maybe we will find hope in knowing, what I have always taught my boys, literature is important, but if he asks to just listen to some John Lennon or some Bruce, that’s okay too.

Will this be a better week?

Transitions are difficult and change is hard.  This week I face something I have been looking forward to for months; moving back home!  Close to my parents and my brothers and sisters.  And closer to my sons, o, not the little one who now lives is Oregon, but the move does put me closer to being able to actually visit him, and see the Pacific Northwest, which was a bucket list item for years.

So, packing up.   Yeah, packing up stuff that has already been packed up to the nines…. most of my “stuff” is in a storage unit back home for the last four years. So packing up now is far different then the last time.  A whole box, a big box contains all of the notebooks and medical reports for my son, and the label is “bedroom”.  I am going to need that information, at my fingertips.

We had a sweet conversation this afternoon with my youngest son, James, in Oregon. He must have been tired after all that talking, but I love it, he makes me laugh, in the way that really cool sons can.

And he talked about what his holiday plans are, another “Friendsgiving.”  Last year he had a Friendsgiving and came home for a visit in February, skipping all holiday family reunions and other such stuff.   Yup, he’s pretty smart that way.

In many ways this year, I am happy for him.  He will have a great Thanksgiving, and then hopefully come home to us and have a lovely Christmas…..

And then to my shock and surprise, today came the news we have all been waiting for.  My son Christopher was officially admitted to the specialized neuro-rehab facility for brain injury in Tulsa, Oklahoma that we have been waiting on for months, no years.

So, as it stands, I move this week to be closer to family, and will be closer to the hospital where Chris will live for… as long as it takes to do the full transition, and final transfer.

My gratitude for today is: thank you Lydia Pearson and the facility for always being there for me for the last seven months, and for expediting this admission, because if I had waited for the state of New Jersey to do it all, I would be getting ready my beach chairs again, and as warm as this fall has been, I don’t mean this year.

Now we wait the final word on transport, because the facility is out of state.  That was the whole problem all this time, and no one knows it.  New Jersey is sadly lacking in Brain Injury Neuro-Rehabilitation, and it has been a long hard road, that is, perhaps, finally, in the works.

 

During my daily visits to the hospital, in looking over some of the contacts I have made on Facebook in the Epilepsy corner, and there are several good groups, I was happy to share with my son some of the humor of his peers as they undergo the Video EEG Monitor all over the world.  We were unlucky for the first six days, we did not have a private room.  and boy could I tell stories.  HIPAA would roll over in the proverbial grave it should already reside in….But I was trying to make the best of a tough situation, and my son did it with more grace than I, those first few days.

Some have cute caps, bows and little hats over their heads as they begin the long process that can take 3 – 5 days, or longer, in bed, hooked up to a computer, on video tape.  The only thing you can do is get up for the bathroom from time to time once the technicians put in all the probes, wrap your head in gauze, and pull a cotton sheath over the wires and make a looooooong pony tail of those wires.  Then you wait.

Luckily, doctors can read the information on a daily basis, in real time now.  When we first experienced this, doctors discharged you, and then read the reports in real time, and you got the report months later.  Now you know results every 24 hours.

I showed my son these pictures from my laptop, and it overwhelmed him a little bit.  Where he is now, he has no access to the internet, and cannot connect with peers who may be experiencing the many effects and affects of severe Epilepsy; while I have been able to negotiate good groups all over the world.

He looked a little like he did when he was very tiny and I first showed him a new book, Lego set, or a brand new toy.

This is the reality of living in an institution.  No patients at his hospital are allowed internet, email, Skype and especially not Facebook (believe me I checked; it’s not just us).

We looked at children, teens and young adults who were talking about their experience of Video EEG Monitoring, and we could see, the truth, it is not a desirable time for those who suffer from Epilepsy.  I look forward to the day when my son can share on his own, his feelings about this, and his many other experiences, but for now, I put forward the reality.

Under the most uncomfortable circumstances for anyone, he did well.  He did real well.  And I am proud of him.  How many people could stay in the bed, all day and night?  For a whole week?

Yeah, there was a TV and a remote control, and a Harry Potter marathon (which made the weekend bearable), and pretty nice nurses, and a lot of decaf coffee, and even a couple of chocolate covered raisons, OH! and homemade suppers from Nana.  (Thank you Nana).  And even some really nice visits from some uncles who are beloved.

But in the end the reality is less overall seizures from last summer.  Good news!

I saw a beautiful young lady checking in today, and getting her probes put on.  She looked calm and a little bit anxious, and I wondered:  Who is she? Where does she live? Does she have family coming to visit? Surely the way she looked, and was dressed, she is not going ‘home’ to an institution.  Is she my son’s ‘peer’ in the Epilepsy/Traumatic Brain Injury Community?  Would she want to befriend someone like my son?  I walked on to get my son yet another cup of decaf, and just wondered.

What a mystery is Epilepsy.

On the very first visit to a pediatric Neurologist we had, back in 1996, the doctor said, and I will never forget it, the doctor said: “It is 1996; this is what we know.   Someday we will know more, let’s talk.”

So we gave the history, and so we continue the history. Brave souls emerge and enter here. Only the brave are allowed.

I am proud of my son.

This week is a make ya or break ya week.  We will be in hospital for a Video EEG Monitor.   For those who don’t have Epilepsy in their background, that means spending almost or more than a week with probes all over your head and chest, and a video monitor recording the seizures.

You can’t walk around, you can only go to the bathroom, and usually you are in a private room.  Hopefully, if the hospital is not full, we can have a double and I can sleep there.

We have been doing this since 1996. We know the drill.  Confined to the bed, my son will be monitored to see how many seizures are occurring and where in the brain they are occurring.

It’s a fascinating procedure.  And in the 21 years since this started for my family there has been many changes in technology.  In the beginning, the monitors were read on video tape, in real time.  Then you would have to wait for the results as it would take the neurologists weeks to review the video results.  Now it is done in real time with doctors giving hourly or daily reports.

But we will have the capability of being in a normal hospital with normal visiting hours and a phone, TV, and lots of support.

This particular test will be the last step in determining other placement, which now is out of state.  Way out of state.  Once we know the results, and the admission is complete, I will share that location.

In the meantime, have a good week my friends, and pray for us please.

This is the latest information I have to share:

http://www.dailyrecord.com/story/news/2017/09/22/greystone-violence-security-probed-trustee-meeting/688512001/

And that my son was punched in the back, yesterday, by another patient.  Nice.  Real nice.  He’s okay, but he also knows that he’s not in the right place.  He needs to be moved to a real neuro rehab, and it needs to happen now.

Source: Taming the Temptation, to Say What I Really Think

Knowing that my son had an outside appointment for an extremely important procedure scheduled for a Monday, I gave him the choice of a nice visit on Sunday, or I would attend the appointment.  I usually do both, but it’s getting to me and I have to make choices, I let my son make the choice.  He chose the visit on Sunday.

Because we have had so many problems with transportation, and other negative situations, and knowing that this particular procedure was extremely essential to a possible discharge to an appropriate facility, a real brain injury facility; it was a tough choice.   However, he made the choice and we had a lovely afternoon visit on Sunday.

A very good friend, whom I have known since high school, was in town from California.  We were able to meet up for a quick visit, as I travelled from the hospital to home, she went out of her way to meet me at my convenience, not hers, and we had a great visit, some laughs, and I have new appreciation for how lovely a friend she is and has always been.

On one of her last visits from California, years ago now, she actually accompanied me to visit my son when he was in Hagedorn, before that hospital was closed.  She got my son to laugh and to actually get up and dance with her.  At that time I was in awe.  There was no judgment, no negative feedback, just a person visiting a friend’s child who was in hospital, as if it were a regular hospital for an illness that carries no stigma.

Then Monday hit, and reality set in.  Starting last Friday morning I sent multiple emails, to the powers that be, to inquire if all was set for the procedure and not one single person got back to me to confirm that: transportation was in place, accompanying staff were in place that my son was fully prepared for the visit.  It was the first EEG in over a year, too long, and anxiety was prevalent.  For both of us.

So I did the one thing that I could do.  I got to the nurses.  Yesterday, I met with the nurse, and today I called three times, and every time those nurses went out of their way to let me know that all was well.  Even though that is not their job, in this particular, so complicated situation.

No matter what I say or write about this ordeal, I know that, most of the time, the nurses who work with my son are truly special people.  It was a long hard day.  But it was important and I don’t see why it would be so hard to answer my questions with a simple note or phone call.

So I end this with the knowledge that some friends are true friends, that laughter doesn’t always have to make me feel guilty and that some of the people who work with my son are truly doing their very best.