It’s so wonderful waking up on a Saturday with no real plans but a sense of optimism and hope, just bolstered by hearing my brother say first thing “No voices.”.
We are truly living in a miracle right now and soaking up every second of it.
I’ve been wanting to go back to the beginning, when John first moved here just over a year ago, for some time now. But I just wasn’t ready to write about it as these last few weeks have just been a hard patch and I couldn’t find it in me to dive back in to that time.
But today’s the day to tell the tale…another miraculous story that has shined down in our lives and I look to double our inspiration, remembering.
The Fall of 2011 and Spring of 2012 were filled with rough patches for my dear brother. He’d lost a chunk of his services back in Illinois due to stupid cuts so was left kind of dangling or flat out falling in space on the bottom side of a crack. In the past I’d researched services here in AZ and found we were ranked something like 48th in the nation for mental health (great!) so didn’t even consider moving him out here at that stage. He suffered with those changes, isolating, being unmonitored. It breaks my heart now thinking of that bleak time in his life.
A new behavior erupted after he got angry about his medication and stopped taking it. His access to his Dr. was limited and he felt his Dr. wasn’t listening to him anyway (not atypical I’ve found) so he took the situation in to his own tenuous hands and it was plain and simple, a disaster. The second time he disappeared was in the Fall while I was with my Dad at our Maine vacation cottage. No one had heard from him or seen him in days. My Dad had someone check and his car was gone. This had already happened a few weeks earlier and once John surfaced and came back home, he claimed he just went on a “road trip”.
This time was different though. He was really gone.
Ultimately Missing Person police reports were filed.
Finally, about two weeks later, after that period of sheer hell and fear, John was found wandering down a country road in rural Ohio. He’d abandoned his car and was walking with his backpack, completely consumed with delusions and hallucinations. He was taken to a nearby motel and his car was towed as it had broken down in some way.
He’d met with a woman somehow at the car repair shop who truly grew her wings and flew to his rescue. Something apparently didn’t feel right to her so she went to track him down and found John sitting in front of a Walmart, alone on a bench, hallucinating. The police had taken him to a motel and he’d checked in but become extremely paranoid thinking the room was bugged so walked out on foot and landed at that Walmart. All of this happened before we were notified about anything.
That angel of a woman, drove my dear brother to the hospital where he was immediately admitted. There was eventually a court ordered hospitalization and he spent about two months in that hospital in southern Ohio. My father of course went to stay there for a few weeks and I’ll never forget his describing John’s physical appearance with a shaking tearful voice. He’d been living out of his car for weeks eating fast food and driving…just driving. He believed our deceased Grandfather had taken possession of the wheel and was driving him all around the Midwest.
Finally John was discharged from that hospital and came back home. It was only a matter of a few months though when he went off the rails again and hit the road. Another Missing Person report and the whole nine yards. I was all the way out in Arizona and checked out and helpless. My Dad was trying to manage this all on his own. It’s just heartbreaking to think my father has had to deal with Missing Person reports on two out of three of his children. We know what can happen at the end of that road. It must have been terrifying for him to make that call.
I felt completely lost on how to handle this unmanageable situation. I can’t say I did anything noble or helpful or anything during that time other than support my Dad. As I said, I was in most ways, checked out. I’m not proud about it, just honest.
The summer before all of this I had traveled to Dallas to attend a Dance Workshop weekend there. I made several new friends during that wonderful soul filled weekend and one of them casually said to me “Do you know my friend Asha? She lives in Phoenix. You two should know each other”. So I came home and friended her friend Asha on Facebook and started, ok, basically Facebook stalking her to see who she was.
One of the things I found was she loved her job working with the chronically mentally ill in some program in Phoenix. I remember bookmarking that thinking “we may need that program some day”. As I said, that was all before John started having these disappearing episodes.
Finally during this third incident of lost, John was found holed up in a motel in Indiana. He spent his 50th birthday in that motel by himself. I talked to him on the phone and clearly he was totally psychotic and paranoid. But he was willing to stay there at least until my father got there to retrieve him.
My Dad drove him back to Illinois and to his apartment and left to go do something. Shortly thereafter someone in John’s apartment complex called the police as John was out in the parking lot being loud and disruptive.
It’s my understanding that during that altercation with the police, my beloved brother was yelling at them to just shoot him (tears). Mentally ill people like my brother, at six foot one and 350 pounds, can, will and do get shot by police in events like this. Thank God instead he was taken straight to the hospital. Ironically the very hospital, the very Psychiatric Unit that our father managed most of his career as a Psychologist. I can only imagine how that felt for him to ride up that elevator again to that fifth floor to now see his very ill son.
Something in me snapped that day after hearing how that whole crisis had erupted.
I wrote Asha privately and asked her to tell me about her program. “It’s called Momentum” she said “and it really helps people.” She couldn’t say enough good things about that program so I set about researching. Asha was an invaluable support to me during that time and do you know, to this day we’ve never met in person. She’s moved to another State now. Another angel.
What I found truly shocked me. This was a program run out of a local hospital called “partial hospitalization”. The participants go five days a week, have sessions all day, lunch is provided and get this: so is transportation. The last thing I wanted at that point was for Alfonse to have access to a car.
And, get this, all of it covered by his Medicare. Every penny.
I called my father and just said “we have to get John out here for this program”. It was a no brainer. He absolutely agreed.
But the question was how. John had refused to fly on airplanes for a couple of years at that point. How to get him on a plane to get out here was the first dilemna.
Somewhere along this window of time I went up to Sedona for a weekend. I remember thinking hard about this crisis, desperately seeking a resolution, knowing bringing John out here was going to break through my wall of denial about my need for involvement here and my life was getting ready to drastically change. A million things running through my head on that drive up there by myself.
Every time I pass along this one patch of highway, just off the 17 on the way to Cottonwood I remember that day I pulled off the road in tears and started talking, out loud, to my mother.
I begged her to help me. I begged her to intervene and help guide me. I literally blurted these words out loud to her through my deep sobs gripping the steering wheel on the side of that road, “I will do this but you need to help me. I will finish the job you started with your baby boy but I need your help. I need you to come down and move through me. Guide me, please guide me on what to do”.
I didn’t feel any kind of shift immediately beyond the release you feel after a good hard cry but I guarantee you, something changed that day. In me and around us. The skies parted and a way was shown.
I came home after that weekend and crisis hit my own life! I was struck down hard with food poisoning!
I had to cancel my work days for at least two days while I was miserable in bed.
But it carved out time. Time for me to do the research, make a plan.
In the meantime, John was discharged from the hospital fairly quickly and placed in a halfway house that he hated. In fact, he hated it so much, he walked out of it in the middle of the night one night. There was nothing any of us could do to keep him there.
I was in the middle of making appointments and getting him set up in the Momentum program and trying to figure out ways to get him out here to Arizona. My Dad offered to drive him out which sounded like a horrible plan–the two of them driving across the country with John’s mental health very unstable. My father not too great on the long distance driving at age 80. No thanks.
But getting John on a plane…how could that happen?
And now he was home and had access to his keys and could bolt again any minute. It was all very touch and go.
My father began discussing with him coming to Arizona and, as expected, he said he wouldn’t get on a plane. We were kind of stuck but knew without a doubt we had to get him out here and I had it all set with Momentum. They were just waiting for him to arrive.
Finally my Dad came up with a plan to do an Intervention of sorts. He had assembled some Social Worker friends who John knows and likes to have a little “dessert get together” at their home. They planned to sit down with John and basically tell him he was coming to Arizona for this program that I’d found and he was going to have to fly out for it (we had already discussed getting him adequate medication to basically knock him out for the flight for everyone’s safety).
The “Intervention” part of the Intervention was that if he refused and wanted to just go on as he was in his apartment, my father was going to make severe financial restrictions. It was really the only card we had to play.
You hate to have to threaten someone like that but we really were down to the wire, afraid he’d take off again for a fourth time and were out of options.
So I was stuck at home nursing my food poisoning and this deal was going down that night.
I remember that being the day I’d run out of the Gatorade and Saltines my friend Amy had dropped off so I ran out to the store, my one outing in two days, to get more.
I’ll never forget returning to my car and in that QT parking lot looking at my phone and seeing an incoming call from an unknown number in Illinois. I answered it and it was John. He said “Oh I just found this cell phone in my apartment and wanted to see if it still worked!”. Apparently my father had purchased him some kind of “use as you go” cell phone which he stumbled across and somewhere in the recesses of his brain, had my number memorized.
Part of the shocking nature of this call was that John maybe called me, at that point in his life, about once a year. He rarely made phone contact and rarely actually answered his phone, one of many problems we were dealing with in managing him.
I knew the Intervention was going down in just within an hour so sat and listened to him. He was quite manic and rambling about having walked out of the halfway house the night before, how they were mean to him, the cell phone, any number of topics.
Maybe it’s because I wasn’t feeling well, maybe my mother moved in to my body at that moment, I don’t know but suddenly I just blurted this out to my dear, very sick brother.
“John, you need to stop talking now and listen to me. Can you do that?”
“Yes I can do that Kathy”
“John, there is no one on the face of this Earth besides Dad who loves you more than me so you need to listen to me right now. I found a program for you out here in Arizona that is going to help you get well. You need to come out for this program. You need to trust me on this. You are starting it next week and we need to get you on a plane to fly out here within a week to enter it. You can stay with me or at Dad’s condo. But I need you to come out here and go to this program, ok?”.
What I heard back across all those miles, across all those delusions, cutting through the voices in his head will ring in my own memory the rest of my life.
“Ok my dear sister, I will come”.
It was just that simple.
Me sitting in that QT parking lot with a bag of Gatorade next to me in my running car, tears streaming down my face in the middle of a miracle.
What’s kind of funny about miracles like that is you think bugles will go off, a choir of angels singing or at least violins will be playing or some kind of fanfare. But really it happens very quietly and very ordinarily like “of course you would say that”.
I just quietly responded “Great, I’m going to go get you a plane ticket right now” and he said “ok Kathy, I will come. I will come for you. I have loved you my whole life my dear sister, I will come to Arizona for you”.
I didn’t get all excited or jump for joy or show over the top emotion because something inside me said to just treat this like it was expected. Just an ordinary decision like paper or plastic.
While we were finishing up this call, John’s landline rang. It was of course my Dad calling him from the parking lot, ready to pick him up for the “Intervention”.
John hung up with me and said he was going to grab his stuff and go to dinner with Dad. I hurriedly called my father and let him know John had agreed to come, no Intervention needed. It was done.
There was stunned silence of the phone as my father processed this whole thing. He had geared himself up for the worse for two days and now, it was over before it began. I could hear the tears in his eyes as he spoke “it’s a miracle Kathy, just a miracle”.
He said John was much better that evening during that dinner/dessert party.
As soon as I got home I went about researching plane tickets. We needed something for both of them, we needed something direct from Indianapolis and we needed it almost immediately. The nonstop part was my concern as I didn’t want him to have to navigate plane changes or other airports or anything. The simpler the better.
But I’d made that flight so many times myself over the years, I didn’t think there even were nonstop flights between Indianapolis and Phoenix.
You can only imagine the shock on my pale, recovering face when I pulled up some Expedia site or something and saw two one way tickets, direct Indianapolis to Phoenix one week out , FIRST CLASS for $300 each.
I immediately called my Dad and said “I need your credit card. I’m booking this right now”.
From that moment on, the entire conversation about John’s trip to AZ became about him flying First Class for the first time in his life.
I researched that flight/plane/service to every inch of it’s life, calling him daily saying “here’s the menu they serve!” “here’s how wide those leather seats are!”. “This will be the first of many 50th birthday celebrations you have…first class all the way!”. It’s almost like the Program, the stress of traveling, everything dissolved in to that First Class seat.
And it worked!
As my father later told me, John was excited on that plane start to finish, exclaiming to the flight attendants how this was his first time in First Class, how it was his 50th Birthday, how wonderful everything was. He also ordered a couple rum and Cokes and if there was ever a time for that intervention, this was it.
I’m sure my father also enjoyed a few complimentary cocktails himself. Understandably.
It went as smooth as silk.
I picked them up at the airport and John was a bit wound up but he was still excited and telling me every detail of that First Class flight. What they served for dinner, how comfortable the seats were, everything.
To this day I don’t know if that route even existed before or after. It’s like that plane dropped out of the sky with those tickets just for my brother.
Two days later we were sitting in an Intake for the Momentum Program and two days after that John attended his first day.
He lived with me that entire summer, last year. I watched him just get better and better. I watched his medications go down and down as he went up and up.
We had a great summer together until he declared he was ready to live on his own again, back in Dad’s condo. He also had decided he’d not be moving back to Illinois. He wanted to stay now in Arizona.
We boarded a plane together last September and flew back to Maine and all of our friends and family were astonished at the miracle of his recovery. He was like a new person.
At the end of that Maine trip, my father experienced his own medical crisis with his bladder shutting down almost entirely.
Once again I gathered my resources together and did the research and miraculously got him an appointment at the Mayo Clinic out here without a referral. I just called up and asked for an appointment and got it which apparently is unheard of.
The true miracle though was the fact that last Fall my Dad flew out and had surgery at the Mayo Clinic and lived with John who, believe it or not, took care of my Dad from start to finish. Brilliantly I’ll add. Drove him where he needed to get, shopped, cooked, cleaned. He was my father’s primary caretaker he was doing so well.
John was finally discharged from the Momentum Program late last Fall as one of their star participants. I went to his “graduation” and heard him give a speech.
I was like a proud mother.
I have never been in my life particularly close to my brother up until this last year and a half. And now we live like we’ve been this close our entire life.
I was impatient, competitive, short and a whole lot of other unattractive adjectives toward him a lot of my life. That’s just a fact.
But that day on the side of that two lane highway in Northern Arizona I believe I was infused with something permanent.
A mother’s love.
It overtook my mind and has never wavered inside me. I’m not trying to be any way with John, I just am that way.
His fiercest advocate, his biggest cheerleader, his over hovering helicopter, his softest touch. I am all those things and I know it has very very little to do with me. Other than the fact I begged for it.
It’s something I was given from above in a time of desperate need. I asked to be used in this way and my mother is moving through me giving me the right words, the right path, the right attitude, the right heart.
I got my brother back and my mother back all in the same sobbing breaths.
We thought we were going to do an Intervention that day but instead received one I’m pretty sure they call Divine.
Of course we’ve had some bumps in this road over the last year but I’ve never given up hope or expectation that John will rise.
And rise he does. Every time.
My dear brother, my precious angel of a man is the biggest inspiration anyone could ever see in their life if they would just look.
If he can overcome all he has and be alive, truly alive with his innocent fighting spirit, what could any of us accomplish?
Seriously? What could I ever face that would be harder than what’s he’s faced the majority of his adult life and kept going?
Thank you Alfonse for trusting me, for being open to me, for sharing your life with me, for flying straight in to my heart.
I love you forever. First Class all the way from here on out.